I have so much wrong, how can this happen?

[dllfo]

I don't know know where to start.

At the National Jewish Hospital in Denver we found that the part of my brain that tells me to breathe when asleep is not working. If I fall asleep, and not on my Ventilator, I stand a real good chance of not waking up. During a Bronchoscopy, I quit breathing 3 times and each time the dr. put an oxygen mask on me and had to repeatedly yell at me before I started breathing. My wife saw it all. She now sleeps with her hand on my throat at night. That breaks my heart to see the stress she is under.

I was rear ended in 1986 and 2001, with many, many years of lower back pain. I have been on morphine for a few years. I have carpal tunnel in both hands, but testing showed it is a compressed disc. I get cramps in my fingers too. I am listed as 100% handicapped.

I never get headaches. Well, maybe once a year.

My hands fall asleep while typing or writing or even driving, the few times I drive any more. My feet and calf muscles fall asleep while I am sitting in almost any chair.

My Restless Legs Syndrome is back -- so severe I have to use oxycodone to overcome it.

Three days ago I had the Ulnar Nerve area become too painful to touch for 2+ days. It was on my left forearm/palm. Right hand is ok...for now.

I get incredible cramps in my calf muscles. I wake up ripping my oxygen mask off jumping on to the ball of my foot, trying to get the muscle to "release". This started about 12 or 13 years ago, then quit until last week. I am 62, not in good physical condition and I am worried if I "jump up and down" on the ball of my foot my muscle may just rip loose.

I served 4 years enlisted and 16 as an officer during Vietnam. I was exposed to DDT fog for bugs, allegedly I crawled through a famous defoliant while being trained for security (so a lawyer investigating those things told me) and .... my memory is gone. I have to take lots of notes to remember things (I type something here, then go to my MS Word file, then type again).

If you and I are discussing anything and a person walks by, the TV is turned on, by the time I look at you again I will not be able to remember what we were talking about.

I went to a neurologist who gave me Neurontin. Now I am trying valium in the mix. But I don't use Valium or Neurontin when using Oxycodone. I am going to go to a new doctor soon, but I don't know quite what to tell him. I am hoping one of you might have some idea of what this might be. Any one recognize this?
Any suggestions deeply appreciated.

Oh yes, a neurologist checked my legs after the wreck in 2001 and said nothing was wrong. Thanks for your time.

Oh yes, my wife said to tell you I am on Quinine Sulphate for leg cramps and a dozen other prescriptions...oh yeah, whatever makes my urological system work correctly is broke. I set an alarm to remind myself I need to relieve myself or my bladder will get too full, requiring a catheter. IF I have to use a catheter, I get bladder spasms (I am told that is a neurological problem too).

If I am out of line mentioning these conditions, I apologize. I am really frustrated.

[MooseasaurusRex]

dllfo,
As a fellow vet, I want to say "Thanks". As a fellow human being, I am so sorry you have to tolerate all this at once.

Is anything working for you, therapy or medication wise?

I wish I had the vocabulary to find the words and resources for you. Please keep us posted.

[dllfo]

Thank you for the kind words, I almost never had a cramp until I had to take Prednisone. The majority of my small airways are either diseased or damaged. They show up as white dots on the CT Scan....can't remember if that was with or without contrast.

Prednisone has horrible side effects, but not breathing has worse side efffects.

What I take now is sort of a "break even" program, but I am hoping someone here might see this and remember something they read or maybe it happened to a relative, etc.

[painfree]

I don't know know where to start.

At the National Jewish Hospital in Denver we found that the part of my brain that tells me to breathe when asleep is not working. If I fall asleep, and not on my Ventilator, I stand a real good chance of not waking up. During a Bronchoscopy, I quit breathing 3 times and each time the dr. put an oxygen mask on me and had to repeatedly yell at me before I started breathing. My wife saw it all. She now sleeps with her hand on my throat at night. That breaks my heart to see the stress she is under.

I was rear ended in 1986 and 2001, with many, many years of lower back pain. I have been on morphine for a few years. I have carpal tunnel in both hands, but testing showed it is a compressed disc. I get cramps in my fingers too. I am listed as 100% handicapped.

I never get headaches. Well, maybe once a year.

My hands fall asleep while typing or writing or even driving, the few times I drive any more. My feet and calf muscles fall asleep while I am sitting in almost any chair.

My Restless Legs Syndrome is back -- so severe I have to use oxycodone to overcome it.

Three days ago I had the Ulnar Nerve area become too painful to touch for 2+ days. It was on my left forearm/palm. Right hand is ok...for now.

I get incredible cramps in my calf muscles. I wake up ripping my oxygen mask off jumping on to the ball of my foot, trying to get the muscle to "release". This started about 12 or 13 years ago, then quit until last week. I am 62, not in good physical condition and I am worried if I "jump up and down" on the ball of my foot my muscle may just rip loose.

I served 4 years enlisted and 16 as an officer during Vietnam. I was exposed to DDT fog for bugs, allegedly I crawled through a famous defoliant while being trained for security (so a lawyer investigating those things told me) and .... my memory is gone. I have to take lots of notes to remember things (I type something here, then go to my MS Word file, then type again).

If you and I are discussing anything and a person walks by, the TV is turned on, by the time I look at you again I will not be able to remember what we were talking about.

I went to a neurologist who gave me Neurontin. Now I am trying valium in the mix. But I don't use Valium or Neurontin when using Oxycodone. I am going to go to a new doctor soon, but I don't know quite what to tell him. I am hoping one of you might have some idea of what this might be. Any one recognize this?
Any suggestions deeply appreciated.

Oh yes, a neurologist checked my legs after the wreck in 2001 and said nothing was wrong. Thanks for your time.

Oh yes, my wife said to tell you I am on Quinine Sulphate for leg cramps and a dozen other prescriptions...oh yeah, whatever makes my urological system work correctly is broke. I set an alarm to remind myself I need to relieve myself or my bladder will get too full, requiring a catheter. IF I have to use a catheter, I get bladder spasms (I am told that is a neurological problem too).

If I am out of line mentioning these conditions, I apologize. I am really frustrated.

Hi, I hope your problems can be sorted out. Look up the below considerations on Google.

1.Consider going to a NUCCA Chiro. http://www.nucca.org/

2. Consider LENS neurofeedback. http://www.ochslabs.com/intro.php

3. Consider going to a Body worker like a myofascial trigger point therapist (http://www.myofascialtherapy.org/),

Upledger Institute trained craniosacral therapist (http://upledger.com/),
or a highly trained massage therapist.

4. Consider EFT (Emotional Freedom Technique) http://www.emofree.com/

5. Get your blood tested for DDT - Check with your local VA Hospital.

6. You may also be interested in looking up Dysautonomia

[dllfo]

Painfree -- Thank you, I will look up all of those suggestions.

I watched my Dad suffer from Dementia and eventually, Alzheimers until he just laid down and died. He was around 80 when it started and 87 when he left us.

I hope to take a proactive approach and pray that I can find some way to slow some of these problems down or defeat them. If I don't, I am not sure what will happen, and hope I don't find out.

Blood test for DDT? I will check on that one, never thought of it. My father was in charge of some federal land that used DDT up until it was determined to be bad for us. I used to help him by spraying, and of course it blew back on me. In the back of the KC-135s, every time we landed in a "foreign country" we had to fog the inside of the aircraft so we didn't transport critters. We understood that, but never gave it much of a thought when we took a spray bomb in each hand, walked to the boom pod and started backing up slowly. Fogging the inside of the plane. The cans we in a language we couldn't read, so we kept asking each country we landed in if they could read the can. It was something like 98.5% DDT. And our government provided it for us. Don't think I am mad at the military or our government, people just didn't think about most of these things at that time.

My smoker's lungs are from my parent's 3 pack a day habit. For those of you too young to remember the 50' and 60's, our house had a 12x24 "family room" and we had a couple of layers of clouds just hanging. Yeah, it didn't smell good, but it was our parent's doing it.
Neither of our parents had lung damage, just me. If you are a parent and you smoke, that should be food for thought. Good luck quitting.
And no, I never smoked.

[rumpled]

I have just recently recovered from cushing's and found I have a muscle disease. I am sorry to hear about all your conditions... but can you get your doc to wean you off your prednisone and get you on a non-steroid treatment if possible, or get you on a short acting, short lasting steroid to get you over the hump if you don't need it all the time to limit the damage (if that can work, not knowing the whole story)? Steroids can lead to steroid myopathy and just add to the problems you are having as well as giving you exogenous cushing's. In other words, they are adding to your problem and other things have to be found to help you breathe. Ah I remember the clouds - I lived in one too.

I have also found after physical therapy and other things made my pain worse, that accupuncture, oddly, helped.

[dllfo]

Rumpled, is your recovery from Cushing's a permanent thing?

I am not aware of a non-steroidal equivalent to Prednisone.
Lord knows, I have tried most items out. As I may have mentioned, I was on approximately 25 prescriptions at a time last year. Now I am down to around 15 or so.

Steroid Myopathy is something I had not thought about. I have been on a varying number of steroids and corticosteroids for about 5 years. Trying to remember, QVAR 80mcg 4 times a day,
Advair Diskus 500/100, Capex shampoo for morphine induced itching, Nasonex, Singulair, Omnihist II LA, Pulmicort Inhaler, Rhinocort Aqua, and several others I can't remember.

I walk on our treadmill, use "rubber bands" for upper muscles and walk in our pool in warm weather.

I am doing one thing new. When I have a severe pain, I get up, mark the location and take a digital photo. Next time I go see the doctors, I will have exact points of pain to show them instead of shrugging my shoulders and saying I don't remember.

[rumpled]

Well, my recovery is um, permanent by dint of having my adrenals removed... but if I take enough replacements - which now I have to do permanently, I can give myself the cushing's back. With my new muscle thing, my first neuro immediately started to write me a script for prednisone - I about wanted to kick him... the second neuro realized there is no way I can take steroids as my body is so severely damaged already from the cushing's and the steroids my body made all by itself.

Yeah, unfortunately, steroids are a double-edged sword- too much and too little and they end up being worse for you. When both my shoulders froze and I stayed weak in the legs, they first thought it was steroid myopathy, but I just had a muscle biopsy and gosh oh golly gee - turns out it is a mitochondrial level issue. Adult onset is rare. I am waiting to get all my results back.

Have you had EMGs to determine the extent of your nerve or muscle issue?

[dllfo]

EMGs? I have had so many tests I can't remember. I can't remember the name.... they put electrodes in my nerves, from my waist down, said all my neuro pathways were in good shape. They ran similar tests on my hands-wrists-forearm area and said the nerves were fine, my "Carpal Tunnel" is from a pinched disc in my upper back. The Respiratory hospital tested me from one to three times a day most of the time. They tested something that seemed to confirm my brain is not working, but I can't remember. There seems to be a joke in there somewhere, but .... it isn't funny.

They did a discogram, and other testing of my...L4-L5-S1 area, saying the two discs there won't hold much pressure. Other discs held good pressure (90psi if I remember correctly).

Four or five surgeons, one a Neurosurgeon, said at this time, they could easily do more damage than good with my lower back. Another surgeon looked at several MRI's and told us my disc between L4 and L3 is moving front to rear. He was quite proud and excited to have found it. I was thinking more like pouring gasoline on him and setting him on fire. At that moment in time I needed some good news.

I wrote a long post last time about the meds I have taken and the complications --- then deleted it. I have taken around 6-8 steroids and corticosteroids in the last 3 years. In 2003-2004 I took 7 different anti-anxiety pills ... it goes on and on.

Better days ahead for both of us....keep smiling.

[rumpled]

Ah yes, then you have had the test... lovely isn't it. A nice form of torture. I like the needle part. Funny, I passed the EMG but failed the more detailed SFEMG - glad my doc took the extra step. And as usual, imaging fails, and the biopsy for me tells the story. It always seems like a lot of my CTs and MRIs come back ok, but when they cut me open, they always find that I am radically worse off. After 12 surgeries, I know this but they still will not listen.

I too, fantasize about torturing some doctors back - or kicking them when they are not taking my quality of life seriously - or rather the lack of my quality of life.

My husband literally covers my mouth when someone mentions they are on steroids as I want to wear a t-shirt that says they are evil and should be more closely controlled than narcotics for all the damage they do... like narcotics, they have their place but docs hand them out like they are candy without realizing the damage they do. When my first shoulder froze and my ortho wanted to give me a cortisone shot, I am sure he was not prepared for my kung fu reaction and lecture! LOL.

I like your idea about the photos. I use that for my purpling legs and skin changes...

Have you tried a home TENS unit, and lidoderm patches?

[dllfo]

Yes, I use Lidoderm as much as possible to avoid the opiates. The TENS unit does not seem to help. Probably because I can't remember where to put the contacts.

My doctors have been very good about watching the Prednisone consumption. ONLY when I nothing else works. I have a bottle of them I keep for emergencies. Then I forget to take them. My bride is wonderful, she provides adult supervision.

Oh well, it could always be worse. I do have microsoft word files for each doctor. When I have a severe problem I try to write it down, then print it for my records. Otherwise I will forget. Same with Medicare. I was forced on to Medicare with the SSDI. I fought it because my military insurance is a lot better. Tricare for Life pays a lot more things, but there is the hassle of getting Medicrap to say no first. Delay after delay, but we still have the best medical system in the world.

I hear of people demanding we have socialized medicine. It must be people wanting to make money. In California, we have Medi-Cal for the poor. Heck, they get better care than retired military. Our prisoners in jail get dental and vision care, more than the military retirees get. So if you and I smack a doctor and wind up in jail, we might get better care??? :)

I looked in the US News & World Report magazine for the best Neurological hospitals in the USA, found a couple that are in the top ten, if they don't figure this out soon, I may ask for a referral to them. But what if they want to do surgery on my back when my local doctors said it can't be repaired now. Wait for technology to "catch up". My wife wants me to get back surgery if possible, but she forgets I am still walking. If I have a problem with back surgery, I could be in a wheel chair for life. As I have told her, I prefer the pain I know to the pain I might have.

I haven't had anyone cut into my muscles yet. I had two skin cancers removed and a third one the 26th, but that is different I think. Stay tuned....

[rumpled]

Yeah, the biopsy is about 2 inches deep and 2 inches long and they remove 4 pieces of muscle, roughly an inch or more long... two stretched, two lax. It was not up there on my fun days list and it was local as the doc explained - yeah, anesthesthia does not like people with undiagnosed neuromuscular conditions. Me neither come to think of it. But I got two complementary ace bandages! That made it all worthwhile.

Glad your Bride is kind... my hubby is also wonderful and that makes a world of difference. He can laugh with me when my biopsy report comes back using the word "rare" seven times.... I think I need to change my middle name.

I just found out my neuro is moving to Florida. I am going off to cry. I just hope I get a definitive diagnosis next week or this limbo land crud is going to drive me nuts. Again. I told him it took me over 12 years to get the Cushing's diagnosis and I did not think I had another 12 for the next diagnosis.

[Gitti]

I am very sorry I can't be much of a help. The only thing I can recommend is to take magnesium for your cramps. I used to have some leg cramps at night and that mineral really helped me.

Sorry I can't offer more advice. :hug:

[dllfo]

Thank you for the suggestions.

The biopsy sounds all most as much fun as an autopsy. While alive. I did that once, but with a chain saw whose handle broke.

Since I have one more skin cancer to be cut out of my shoulder next week, I am almost afraid to ask which muscles they do this biopsy on.

Sort of like the Epi pens. I have a twin pack. If I quit breathing and do not start (which I won't) my wife is supposed to stab me in a large muscle (thigh I think). I told her to be real sure I am not breathing because if she is wrong, she had better stab herself so she will be able to outrun me.

Gitti, I take Cal-Mag daily. 1000mg of Calcium and 400mg of Magnesium plus15mg of zinc. Then I take some potassium and eat enough bananas to qualify for Orangutan Island.

What I don't understand is why the FDA took Quinine off the list for leg cramps. I have been taking it since my first Prednisone.
I might have had a dozen cramps in my first 58 years, then I have had countless cramps since Prednisone.

[dllfo]

OK, are you sitting down?

This is a serious "whine & snivel" item. I can't sleep because my the area under my toes are .... bothering me. They don't itch, they are just irritated. Like if you have something under a finger nail, or something between your teeth. Not painful, just real irritating. I took a shower, went to bed a couple of hours ago. Yep, I have cleaned under every toe nail and found a very small amount of "skin".

This has to be the all time champ for dumb reasons you cannot get to sleep. And I am tired. I am wondering if this is some problem with my nerves. It has never happened before.

[rumpled]

Ah - the biopsy was the thigh! It was on one of the quadriceps. Epi-pen area. Ew - the chain saw does not sound fun. My cousin did that - but to his head. It was not pretty but he survived. My hubby put his hand through a table saw... our garage looked like a crime scene. Lucky I am not afraid of blood...

I think you need a gin and tonic (with lots of tonic water - there's your quinine!!!) and a good pedicure and off you will be in sleepy land... if only. Sometimes I cannot sleep as the blankets hurt my legs. You are not alone. Not that it makes you feel any better, but you are not alone.

Are you taking vitamin D? As in a lot of it, not the US RDA? And B12? Not to push brands, but I found a calcium citrate at GNC that has 800iu of vit D and magnesium (400mg) in it to boot that I take before I go to bed (as citrate can be taken on an empty stomach) and I think it has really helped something besides the 1000iu of D3 I am taking.

[dllfo]

Ouch, chain saw to the face is a bunch worse than mine. I just took all the meat off the bottom of my little toe. I had jerked my left leg upwards and it still got me.

Many decades ago, having just returned from a year in sunny South East Asia and having been discharged from the Air Force, I was living with my parents while going to college. I was going to paint my old motorcycle trailer and my dad said I should take the rails off so the powerful sander would not get "caught" and come flying at me. Well, as only the young can do, I dismissed my dad's suggestion with a thank you and he went back in the house. Not 5 minutes later the grinder/sander caught on the aforementioned rail and came back towards my groin area at warp 9. Being extremely active in the martial arts, etc. I pulled my hips back and it missed. I was chuckling to myself about how cool I was when I noticed a breeze where it didn't belong. I took a closer look and realized the grinder had removed my zipper. I can't speak for the rest of you, but I thanked the Lord and went in to thank my dad for his suggestion. Mom saw the zipper missing and no blood, so she knew, but as mom's are want to do, she just smiled. I blushed.

Saws and grinders can be real dangerous. But youth and arrogance are even more dangerous. I peaked at 16 and have been getting dumber since. The older I get, the smarter my parent's are getting. :)

[rumpled]

Owie - reading your story, I am even keeping my legs crossed and I am female. *grin*
Yes, well my husband's father was a full-time professional carpenter... so naturally he thinks that via er, osmosis or something, he is one too even though he works with computers all day and only works with wood once in a blue moon and over-engineers every project (but I do love him tons!). We laugh and well, yeah, parents do go through that very intelligent phase... but now they have hit the dementia one (sadly his mom passed from this at Christmas) and his dad is having a hard time, probably having the same issue.

[mrsD]

Thank you for the suggestions.

The biopsy sounds all most as much fun as an autopsy. While alive. I did that once, but with a chain saw whose handle broke.

Since I have one more skin cancer to be cut out of my shoulder next week, I am almost afraid to ask which muscles they do this biopsy on.

Sort of like the Epi pens. I have a twin pack. If I quit breathing and do not start (which I won't) my wife is supposed to stab me in a large muscle (thigh I think). I told her to be real sure I am not breathing because if she is wrong, she had better stab herself so she will be able to outrun me.

Gitti, I take Cal-Mag daily. 1000mg of Calcium and 400mg of Magnesium plus15mg of zinc. Then I take some potassium and eat enough bananas to qualify for Orangutan Island.

What I don't understand is why the FDA took Quinine off the list for leg cramps. I have been taking it since my first Prednisone.
I might have had a dozen cramps in my first 58 years, then I have had countless cramps since Prednisone.

Magnesium? Take a look at the label of your product...if it says magnesium OXIDE...you are most likely NOT absorbing very much if at all of the mag.
(typically 8mg for a 400mg Oxide tablet)

I would try another magnesium and I think you will find a much better response.
http://neurotalk.psychcentral.com/thread1138.html

Prednisone is a huge depleter of nutrients:
calcium
magnesium
potassium
selenium
Vit D
Zinc
folic acid
Vit C

You can get tested for the D now at the doctor's and I would recommend that highly. Many people with chronic syndromes/diseases are very low in serum Vit D levels.

[dllfo]

thank you for the suggestions on Vit. D. I had a complete blood workup about 2 months ago and they said everything was fine.

I asked about my vitamin levels (because of the Prednisone and other steroids) and they "said" those were fine too.

For many years I have wondered why we can't take a sample of our bodily fluids at -- say -- age 20, then age 30, then age 40 and so on. It would seem like an inexpensive indicator of what we are missing. Sort of like a farmer taking soil in for testing. I guess that is an oversimplification, but you get the idea.

If they say I have to do a muscle biopsy or die .... I might have to reschedule the appointment while I think about it.

[rumpled]

Ooooh - I never rely on them saying "fine" - that is the kiss of death for me. I have learned, the hard way, to get copies of everything - so I know where all my levels are. Your Vit D could be like 1 point off the bottom but they won't see it in scanning the normal column and what is normal is set way too low. Plus I have learned about all the lab errors made by the technicians in my tests (wrong color tubes, not keeping certain ones cold or frozen) which then made my results normal-er or bizarre - or even the wrong time of day can throw stuff off. I now takes tons of D3 and it is finally having an effect. I like that MrsD is a pred hater too! It can really do a number on you. But the docs love it and hand it out like candy at halloween.

Aw - at least the guy doing my autopsy I mean biopsy was a trooper... I told him all about my tumor twin who is having the same problems (only her legs are more effects instead my arms are) and he did a nice job on the incision as I showed him all my other scars and impressed him with my keloids.

They could take samples but I would hope that most of us are healthy... it is just us... well, um, what are we? And what on earth caused this? I hope to find out on Tuesday.

[dllfo]

Sorry to take so long getting back, fighting a flu bug or something. You are right but I just sort of accepted whatever the lab people told me. I never thought of them messing things up but I should have suspected that when they asked when the baby was due. :)

I guess I am too trusting. Wrong time of day causes a difference? I understand fasting, etc. but never gave any thought to "wrong time of the day."

I have said it before, but my wife is truly a "Gift from God" in every sense of the word. She realizes my memory is poor and watches what I eat. Brings me a couple of bananas a day, an apple or two. Otherwise I forget to eat them. She is pretty much up to speed on which vitamins do what and so on, but neither of us have considered the labs screwing up. I should have because our son-in-law runs a lab in a hospital in the Mid-West. Wish we could have our lab work done there. I know he would follow up.

I only take a Multi-Vitamin where Vit. D is concerned. No more, no less. How much Vit. D is in chocolate? Hmmm.

How did your tests come out? You posted on the 17th that you would get the results on Tuesday. I hope all is well.

[ConsiderThis]

Painfree -- Thank you, I will look up all of those suggestions.

I watched my Dad suffer from Dementia and eventually, Alzheimers until he just laid down and died. He was around 80 when it started and 87 when he left us.

I hope to take a proactive approach and pray that I can find some way to slow some of these problems down or defeat them. If I don't, I am not sure what will happen, and hope I don't find out.

Blood test for DDT? I will check on that one, never thought of it. My father was in charge of some federal land that used DDT up until it was determined to be bad for us. I used to help him by spraying, and of course it blew back on me. In the back of the KC-135s, every time we landed in a "foreign country" we had to fog the inside of the aircraft so we didn't transport critters. We understood that, but never gave it much of a thought when we took a spray bomb in each hand, walked to the boom pod and started backing up slowly. Fogging the inside of the plane. The cans we in a language we couldn't read, so we kept asking each country we landed in if they could read the can. It was something like 98.5% DDT. And our government provided it for us. Don't think I am mad at the military or our government, people just didn't think about most of these things at that time.

My smoker's lungs are from my parent's 3 pack a day habit. For those of you too young to remember the 50' and 60's, our house had a 12x24 "family room" and we had a couple of layers of clouds just hanging. Yeah, it didn't smell good, but it was our parent's doing it.
Neither of our parents had lung damage, just me. If you are a parent and you smoke, that should be food for thought. Good luck quitting.
And no, I never smoked.

(((((((dllfo)))))))

My gosh, you sure have a lot to deal with!

I'm sure someone must have mentioned this already, but in case they haven't, if your hands are falling asleep it may well be from low vitamin B12. If you look into vitamin B12 and decide to try it, be sure to get the methylcobalamin because it works a LOT better.

Your description of not breathing in your first post caught my attention. It reminds me of how if my stomach growls I can't tell from any kind of feeling. I usually look around to see what caused the noise. Since I had tetanus I don't feel my stomach... when I had tetanus my stomach muscles moved in the most disconcerting way and then felt as if they were becoming cement.

I mention this because I think there has been some improvement as a result of taking quite a lot of methylcobalamin... You might look into it.

[rumpled]

Man... I knew the appointment was not going well when the resident, after pounding me with one of those hammers meant for reflexes, goes on to say he thinks all my tests are normal. Even my husband was taken aback as the autopsy report had "rare atrophic myofibers" and COX-deficient myofibers indication of possible mitochondiral disorder but probably not since onle a few and the word rare in there about 6-7 times but he says that is normal for old people. I am 44. So I am itching to kick him in the oh but I am too far away.

The neuro who is leaving comes in, gets my labs, plays with my eyes and then decides that I might have myasthenia gravis. While yes, this would be my oh my what, fifth or eigth (I lose count) autoimmune disease, I know the autopsy showed no signs of autoimmune disease since I showed it to another doc... plus all the antibodies showed up negative. That does happen. Previously he had thought this was a muscle disease and now he completely reverses and says MG - but atypical and er, only 70-80% sure. I go back on mestinon where I am sure friendly with my toilet and my choking gets worse, not better so far and depending on if he thinks this works or not, I get to try IVIG, if insurance will let him hospitalize me for 4-5 days. I asked him if I can terrorize the medical students about mis-diagnosing endocrine diseases and he said yes so I plan to bring my pics and harrass them if it gets to that. If IVIG does not work, I get a re-evaluation but by then he is gone to his new post. Brilliant.

The vitamin D in your multivitamin is not enough. It may not even be USRDA. It may not be D3. Aw man, I got some Nature Made Vitamin D (found in target, CVS, costco to name a few) and while it is not the best brand, it is D3 and managed to raise my levels out of the basement to the first floor. Get 1000iu and take 1 or even 2 pills a day. Sometimes you can get coupons or even buy one get one free. You may be amazed at the difference but it takes time. I also like the B12 and I get the ones that dissolve under the tongue. B12 is also well absorbed via the skin so you can get a patch behind the ear. My friends that were low got that and it helped them a lot. I am not low but keep myself fine with the under tongue pills. I agree with the advice above - that is the B12 I get.

[dllfo]

I bought Nature's Blend Vitamin B12 and Potassium Gluconate 500mg. I took it home and read the FINE print. The 500mg is only 83mg. It says "from 500mg of Potassium Gluconate yielding 83mg of Elemental Potasium."

WHAT does that really mean?????? How can they advertise 500, then tell us, in ultra fine print, it is only 83?? The pills I bought at the McClellan AFB Commissary will be the last I get from Natures Blend and I will ask them how they can justify the "500mg" claim.

Next I started reading the Nature's Blend Glucosamine Chondroitin bottle. Put your seat belt on for this gibberish.

Under Supplemental Facts it says 3 capsules are a serving.
Sodium (from Chondroitin Sulfate) .... 160mg
Potassium (from Glucosamine Sulfate) ...170mg

Next is a big black line forming a smaller, separate box.
Glucosamine Sulfate-Potassium .... 1500mg
Chondrotin Sulfate - Sodium ........ 1200mg

I am NOT saying they are misleading us, I am just saying the explanation is confusing. The average individual trying to take vitamins might find this a bit confusing. I was looking at Potassium due to leg cramps.

Vitamin D3? I thought vitamin A and D were supposed to be balanced... guess I can look it up. I am now taking B12 daily. I will try the Vitamin D, but don't want to mess up my glowing health (pause for the laughter to die down) :)

[rumpled]

Please, deception is the hallmark of marketing. And we are not hear to laugh. Er, much. :)
Here are some articles:
http://jcem.endojournals.org/cgi/content/full/89/11/5387
http://www.nutraingredients-usa.com/news/ng.asp?id=52980-vitamin-d-more
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=506781 (not thrilled that they say older people can take less)

A couple of my endos consider Vit D to be a hormone and in some lists, it is there. Yeah, they used to say too much D was bad but now, they tell ya to load up to a point. What happens is D helps you absorb calcium hence why it is usually found in calcium pills. People don't drink enough milk anymore. Not sure about the connection with A so someone else has to chime in on that.

[dllfo]

I agree, America is now running on "You lie and I'll swear to it."

Especially advertising or Hollywood. Ever see a new movie come out and they have really good things to say about it? IF you read the fine print you will see it is from the Pine Bluff High School Gazette or the "Dump City" citizen's entertainment section and was written by some guy who types things on web sites. Oooops.

You are right, I should not have been surprised.

Sorry about the ole Hammer to the shin bone trick. Followed by an apology as they aim it elsewhere.

Dr. Mom is the one we can really believe in.

I don't know if I mentioned it, but a nurse who visits this site was kind enough to PM me with lots of ideas and her take on some of my problems. She is one smart lady.

CCHS or Congenital Central Hypoventilation Syndrome, comes the closest to my life of anything I have seen. I was born like this, got better, was in a bad car wreck and it came back. There are several other key things that fit as well.

Sometimes we find knowledge when are not expecting it.

Who would think low Pulse Ox (low 80s) could be an indication of a hole/tear in your heart?

OR Vocal Cord Dysfunction is why I was passing out. We can learn a lot more here than from some doctors who are trying to see 20 patients an hour.

[rumpled]

Oh good! At least someone has brains around here. I am blonde. I have an excuse. :D
The mestinon failed and now I have a semi-permanent eye twitch that is driving me nuts. It also means I get to go into the hospital and have the IV immunoglobulin infusions for 4-5 days starting tomorrow. The guy is trying to figure me out before he moves to Florida...
Can any of your disfunctions be fixed? A shock here or there? I can see if I can steal a hammer but I think I look guilty now with the eye twitch...
Does your wife put a lot of pillows around just in case? Soften the fall?

[mrsD]

I bought Nature's Blend Vitamin B12 and Potassium Gluconate 500mg. I took it home and read the FINE print. The 500mg is only 83mg. It says "from 500mg of Potassium Gluconate yielding 83mg of Elemental Potasium."

WHAT does that really mean?????? How can they advertise 500, then tell us, in ultra fine print, it is only 83?? The pills I bought at the McClellan AFB Commissary will be the last I get from Natures Blend and I will ask them how they can justify the "500mg" claim.

Next I started reading the Nature's Blend Glucosamine Chondroitin bottle. Put your seat belt on for this gibberish.

Under Supplemental Facts it says 3 capsules are a serving.
Sodium (from Chondroitin Sulfate) .... 160mg
Potassium (from Glucosamine Sulfate) ...170mg

Next is a big black line forming a smaller, separate box.
Glucosamine Sulfate-Potassium .... 1500mg
Chondrotin Sulfate - Sodium ........ 1200mg

I am NOT saying they are misleading us, I am just saying the explanation is confusing. The average individual trying to take vitamins might find this a bit confusing. I was looking at Potassium due to leg cramps.

Vitamin D3? I thought vitamin A and D were supposed to be balanced... guess I can look it up. I am now taking B12 daily. I will try the Vitamin D, but don't want to mess up my glowing health (pause for the laughter to die down) :)

Potassium is limited by the FDA as a supplement in this country. 99 mg is the maximum allowed in a supplement. The reason for this is that taking excess potassium can be dangerous and upset the heart rhythm.
The best way to get potassium is thru foods. Over the counter potassium supplements are useless. We need potassium daily in approximately 4.5 grams -- that is 4500 milligrams. A can of V8 juice has over 600mg of potassium compared to a tablet of 99!
Your glucosamine has more because it originally has more. Like the V8 juice it occurs in nature that way. Making a supplement FOR potassium is artificial and therefore has to have the 99mg rule. Same for Gatorade..a man made drink with only 30mg potassium/serving.

The most likely cause of cramping is low magnesium. The American diet is very low in this mineral, and magnesium is needed for muscles to relax.
Here is my thread with information on it.
http://neurotalk.psychcentral.com/thread1138.html
Also contained in that thread is an explanation of ELEMENTAL vs total weight for minerals. That should help you understand your labels.
Organic molecules weigh more than individual elements do. Minerals are attached to organic molecules to help them be absorbed. So the elemental value of the mineral seems low compared to the carrier organic molecule (often called a chelate).

One does not have to balance Vit A and D. People think that because for decades they were given a natural source called Cod Liver Oil. Both A and D happen to be stored in the liver, so when fish livers are extracted, A and D result together. One can take them separately, with no problem. In fact Vit A is more toxic than the D. All of the new research today is showing Vit D deficiencies to be more common that people previously accepted. So you see more Vit D3 supplements in the stores now. If they are not labeled as Cod Liver Oil, they contain only D3. D3 is the bioactive form of Vit D. Many doctors today are testing for D. You can request this test.

[dllfo]

First, thank you for the information. I have been drinking V8 juice since you mentioned it. 6oz a day. Here are my vitamins I take. I am not sure if I have the right balance, but I am trying.
I am up to 224lbs with the help of Prednisone. Prednisone really puts weight on me. Frustrating.

I take Calcium 1000mg x3
Mag 400mg x3
zinc 15mg x3
multi-vitamin 1
B12 500mg x2
C 500mg x2
Iron 65mg two a week
Potassium Gluconate 500mg 2 a week

Glucosamine 1500mg x3 day
Chondroitin 1200mg x3 day
Vitamin C 60mg x3 day
manganese 2mg x3 day

V8 drink, 6 oz


Thanks for the suggestions.

[rumpled]

Yeah, the prednisone is pretty evil. I ended up gaining 12 pounds in a couple of days after they practically almost killed me in the hospital... I had an adverse reaction (aseptic meningitis) to the IVIG and had an adrenal crisis on top of it and they decided I did not know what I was saying and it took them 5 hours to give me life-saving steroids when I had a 103.5 fever (jerks!) making me close to death and the next day the loaded me up when I did NOT need it putting me on a see-saw that I am still recovering from. No more IVIG for me ha ha. Ever.

Wow - you take a lot of pills! I hope you spread out the calcium as the body can only absorb so much at a time. I believe the same is true with some of the other vitamins... but I see you are taking them over the day which is good. I don't know much about the other vitamins - I just worry about a few things so far but I lost magnesium, potassium and sodium when my adrenals tanked - it was awful. V8 is very helpful - I drink it myself.

[mrsD]

First, thank you for the information. I have been drinking V8 juice since you mentioned it. 6oz a day. Here are my vitamins I take. I am not sure if I have the right balance, but I am trying.
I am up to 224lbs with the help of Prednisone. Prednisone really puts weight on me. Frustrating.

I take Calcium 1000mg x3
Mag 400mg x3
zinc 15mg x3
multi-vitamin 1
B12 500mg x2
C 500mg x2
Iron 65mg two a week
Potassium Gluconate 500mg 2 a week

Glucosamine 1500mg x3 day
Chondroitin 1200mg x3 day
Vitamin C 60mg x3 day
manganese 2mg x3 day

V8 drink, 6 oz


Thanks for the suggestions.

Thanks for the list. I have some questions.

Why so much Vit C?

Why so much manganese?

What form is the Magnesium in? is 400mg total weight of the tablet or elemental? If elemental 1200 mg a day is alot. RDA is 400 for adults. If the magnesium is magnesium oxide, then you are not getting much from that.
400mg is the typical magnesium oxide marketed.

You need a test for Vit D status...because prednisone depletes that. There is not much in a multi vit.

[dllfo]

The Vitamin C is because ... I can't remember. Morphine moment.
I had forgotten I was getting Vitamin C from 3 sources.

OH, the Magnesium ..it is from Magnesium Oxide. Cal-Mag with zinc.

The Manganese comes from Double Strength Glucosamine Chondroitin Complex. It has Boron -- 3 mg.

The Magnesium is in that pill. I have no idea what form it is in.
The Condroitin Sulphate says (Bovine, Porcine, Avian) but does not specify the exact "formula".

I will ask for the Vitamin D test.

I get my vitamins from an Air Force Commissary, Pharmacist Formula and Nature's Blend.

When I told my wife how much Vitamin C I was taking she sounded like you. Guess the Vitamin C levels will come down.

Sorry I can't be more help.

[mrsD]

on Vit C is showing some alarm. Diabetics who take more than 250mg a day
have a higher death rate than others.

Since we all have some insulin resistance due to aging (if you are over 40)
being prudent with Vit C at this is wise. Perhaps new future studies will refute
this, but perhaps not.

Studies have shown that magnesium in oxide form is not absorbed appreciably from the GI tract. So don't count on that supplement to help much.

Chelates are designed to give better absorption. Please read my Magnesium thread for suggestions etc.
http://neurotalk.psychcentral.com/thread1138.html

High doses of manganese are found in violent people. (I recall a study of prisoners in Britain about this)...also high manganese intake can lead to Parkinson's.
Here is a monograph on it:
http://lpi.oregonstate.edu/infocenter/minerals/manganese/index.html

A brand name glucosamine product was contaminated with manganese and reformulated. Cosamin DS is the name.
Because manganese is often inhaled (gasoline exhaust) and common in foods,
I am hesitant to recommend it as a supplement. If you can find another glucosamine product...that might be a good idea.

[Alffe]

Mrs D. you are a treasure! :hug:

[mrsD]

Mrs D. you are a treasure! :hug:

I guess there is some advantage for being OLD (at least I have experience!!)
I will try and squeeze ANY benefits from being OLD these days!
I had a wonderful Bloody Mary in a restaurant last Friday, and the waiter didn't even card me! LOLOLOLOL

I am not aging gracefully... my mind is still back in my 20's! sigh!

Thanks for the compliment!

[Alffe]

Aha! A woman after my own heart! :hug:

[dllfo]

MRSD I have downloaded your suggestions and will switch the type of vitamins.

Whether Medicare will pay for the tests is anyones guess.

I looked back over my posts and realize there are several other things wrong, but after a while, people get turned off hearing your complaints. Some of my problems are excruciating while others are irritants. All of us here have problems that "weigh" on us. They wear us down until life itself is questionable. Having said that, please don't think I am contemplating suicide. I would never, ever, ever commit suicide for religious reasons and because I love my family more than myself. I am very lucky.

Thanks so much.....Dave

[mrsD]

MRSD I have downloaded your suggestions and will switch the type of vitamins.

Whether Medicare will pay for the tests is anyones guess.

I looked back over my posts and realize there are several other things wrong, but after a while, people get turned off hearing your complaints. Some of my problems are excruciating while others are irritants. All of us here have problems that "weigh" on us. They wear us down until life itself is questionable. Having said that, please don't think I am contemplating suicide. I would never, ever, ever commit suicide for religious reasons and because I love my family more than myself. I am very lucky.

Thanks so much.....Dave

It takes some time to fix things...if you have neuro problems due to nutrient deficiencies. Also RX drugs complicate things for some.

You can only do a thing one at a time.
If you want to PM me feel free.

For example...I don't think glucosamine/chondritin does much...and you pay $$ out for it. I, myself, use SAMe for arthritis very successfully...I put my money THERE instead of other places.
I am sort of losing your direction, so if you can PM me and give me more details? Age, when you started feeling poorly, and other drugs you use?
No promises, but I can sometimes help.

Don't despair. We are all getting old, and the medical community has no clue how to help us...

[dllfo]

Thank you, I will. My various problems do leave me "all over the road" at times. It seems like something new pops up monthly. Like my feet hurting recently. I walk down the hall and my left foot will suddenly have excruciating pains running the length of the foot. I couldn't put weight on it. I either used full crutches (I use a forearm crutch most of the time) or crawled. Next day my right foot nukes me with a pain running from one side to the other, not length ways. It was just in front of my heel. It lasted as long as I put weight on it. After a nights sleep it was ok.

BUT, for the first time in my 62 years of age (Chronological age, not maturational age which is in the lower single digits) I got out of bed and my right knee failed me. A real shock. Full crutches did not help. I finally laid down for a few hours and that did not help. A light weight knee brace did work. I wore it for a couple of days. That was a week ago, no pain in my feet or knee since.
I had not lifted anything heavy or climbed a ladder or anything.

Tomorrow I will go in for a blood test to check my PHOX2B gene.
I fit the CCHS diagnosis in almost every single element. From having to sleep on my mother's stomach the first year and a half of my life because I would quit breathing and not start again.
After a major car wreck (rear ended by a ford truck whose driver admitted to doing over 80mph to the CHP) ... lower back is damaged beyond modern science's ability to correct it.

A lady who comes here part time found me and we PM'd. She is light years ahead of the 3 Neurologists I have dealt with. She pointed me towards CCHS and some other things. Like MRSD, she is a real blessing for those of us who are new to these things.

All of us on these threads are blessed to have them helping us.
And those of you who give me, in particular, are a big help.

Thank you again...Dave

[dllfo]

Here I am again. It is 1:27am. I can't sleep. God knows I need to, but I can't.

RLS is back, with a vengence. I have upped my Gabapentin to 900mg a day and for good measure, tossed in 15mg of Oxycodone because I have saved a gallon jar of it. Kidding of course, but my RLS, leg cramps and --- drum roll please --- THE BOTTOM OF MY FEET ARE HOT. I kid you not. I put lotion on them and they still "burn". WHY WOULD OUR FEET FEEL LIKE THEY ARE REAL HOT?? ONLY THE BOTTOM. BTW, I put lotion on my feet daily. The good stuff at the dollar store. :) No, my dr. recommended some and it is great.

OK, it is 1:36am, I have been up an hour, took 600mg of Gabapentin and 15mg of Oxycodone. My RLS seems to be ok and the muscle cramps have went away.

I slept all day, off and on, so maybe that is why I did not go right to sleep tonight. Remember -- WHY do we get "hot feet"?

[mrsD]

Is the best for burning sensations.

Biofreeze, FreezIt, IcyHot and even Vicksvapo rub cream can help.

Menthol stimulates cold receptors and overrides the false burning sensations,
that neuropathy gives. Those of us at the PN board use this intervention quite a bit.

[Koala77]

I keep some ice packs in the freezer and when my feet get like this I get one out and rest my feet on it.

Instant relief! Works for me.

[dllfo]

Thank you.
I thought I was imagining the "hot feet". EDIT: I put lotion on my feet and it used to work. If I put my feet on ice, won't they just heat up a couple minutes after I do that? My thermostat for my whole body has malfunctioned for a few months. Our house is about 2600 Sq Ft and our kids have all moved out. I put a window Air unit through the wall from the garage (it is hidden inside some cabinets). I keep the temp in our bedroom between 62 (winter) and 67 (summer). Anything hotter and I can't sleep. Doesn't that seem odd? I had a complete blood workup and I am fine.

It is hard to know when RLS will strike. It does not hit every night, so I hate to over-medicate "just in case"..... If I would take an oxycodone before bedtime and the 900mg of Neurontin I should not have RLS or leg cramps. BUT if the problems do not occur, I feel like I am borderline abusing the meds.

Luckily, I don't seem to become addicted easily. Dependent yes, addicted no.

I am thrilled to hear about the "cure" for hot feet.

I should have asked people if they have any excercises to stop RLS. Sometimes I can do certain stretching exercises and the RLS leaves alone, then I get lazy and it nukes me.

Thanks again..........Dave

[dllfo]

I tried the mentholatum and it did not help. I will take a huge ice pack back to the bed room. It is about 15x15, commercial type from my physical therapist. I will gradually try the other things. My poor wife has to get shots in her feet because of the excruciating pain when she walks. Steroids I think.

My wife tried the Ment. on her feet and it helped her sniffly nose. I passed those ideas along to the kids. One grandson has a cold, hopefully it will make like a little easier for him

Thank you again...Dave

[mrsD]

containing lotion/ointment does not work for you, then that means the
feelings you are having are central...and not at the feet.

Menthol works for us (peripheral neuropathy patients) because the signals are
coming from the feet.

You need to be careful with COLD. The more you make your feet cold, the more they will burn when they warm up. It is like frostbite. Reducing blood flow
to the feet isn't good for them either.

So try to keep the cooling moderate and of short duration.

Some burning may come from the release of histamine from food.
Many foods like tomato sauces, nightshade veggies, alcohol, release histamine
and this causes flushing of the skin.
http://whfoods.org/genpage.php?tname=dailytip&dbid=246

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

BTW narcotic opiates release histamine too.

[dllfo]

mrsd, you are wonderful.

I know about the opiates. I take 360mg of Fexofenadine a day and I take 4 Hydroxyzine HCL 25mg Tabs a day too. On top of that I have tried Benedryl.

RLS is 900mg of Neurontin a day
Leg Cramps is 972mg of Qualaquin a day
and Valium
I use Neurontin most of the time, and Qualaquin too. BUT on those nights where I can't sleep because the RLS is running wild, I go to a Class II med.

Itches .... too much Caffeine sets it off. Left front shin bone and the back of my head. Dermatologist has no idea why it is always those two spots.

Oh yeah, "Central" type problems. My hands and fingers go to sleep all the time. I was tested and the dr. said I have a disc that is messed up....upper spine I think. I have been told so many things I can't remember all of them. If my legs go to sleep I can move my head left to right, back and forth a few times and they usually wake up.

Opiates mess with my memory cells. Both of them. Thanks again