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Unread 02-15-2013, 11:28 AM   #1
FirstOldOne
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Default Nerve problems

Hello
I am new here and I need help in understanding my nerve problems.
I am a 65 year old Vietnam veteran under the care of the VA system.
I have been diagnosed with the following:
Type II Diabetes
Peripheral Neuropathy of lower extremities
Autonomic nerve dysfunction (Postural Hypotension)
Myathenia Gravis ( I believe this to be an incorrect diagnoses as I will explain)
Cervical Laminectomies at C3-C5
CAD
Sleep Apnea (On BPAP)
CABG X2
Hypertension
Tinnitus
And others that I do not believe are relevant to my question/questions.

1st question has to do with a recent exam, by a different VA Neurologist, that was ordered by my VA Neurologist.
After almost 3 years of me trying to get someone to check me for the muscle spasms (they occur all over my body and hammer away like a jack hammer, some times the same area continuously for day's and some times they spasm and then just lock-up like a cramp) I got the attention of my VA Neurologist, at my appointment in January, when I explained to him what was happening.
I informed him that I had grown accustomed to the spasm's and did not fell them every time unless it was a new one or when something was pressing against the area where it was occurring. He asked me where were they occurring the most and I said lately it has been in the back of my upper arms and shoulders. He placed his hand to the back of my upper arm and sure enough there were some muscle's that were hammering like a machine gun. I had not felt it until he placed his had there.
This got his attention and he scheduled the exam ( I had this exam done 2 years ago for Neuropathy). It was what was done in this exam, it was the shock & needle exam, that I have a question about. When the Neurologist doing the test looked at the paper work he asked why was I having the exam again when I had the same 2 years previously and I informed him that it was ordered by my VA Neurologist because I was having muscle spasm's.
In the process of testing me he would insert a needle in an area and instruct me to move a toe, leg, foot or arm, in a direction as far as I could. I would do this and he would demand that I move it further but I could not so he would take his hand and force further movement and he really worked hard at doing this until he seemed to be satisfied with the results he was monitoring of the test screen. He did this on upward movement of big toe, downward movement of knee, upward movement of foot and resisting the outward movement of my arm.
So, my question is, is this the correct way to test nerve conduction or should it be done testing the movement that I could do and not the movement that he forced the muscle's too?
He did inform me that there were no changes except that there was indication of upper arm nerve damage now. He is also the same person that did this exam 2 years ago.
My Neurologist had diagnosed me to have Myathenia Gravis prior to this test because he had asked me if I have had any weakness in my legs and I said that occasionally my left leg would turn into a noodle for an instant when walking. I have looked up the symptoms of Myathenia Gravis and the leg weakness is the only symptom listed that I have but it's not a continuous weakness.
I just had an event where I passed-out and a VA ER doctor has diagnosed me to have Vertebral Basilar Syndrome and I looked this up and the noodle leg as well as the other symptoms listed, I do have.

2nd question, I complained for over a year about me having a felling of passing out, when I bent over or squatted down to pick something up, and I was given a tilt table test by an outside Neurologist for the VA twice now and both times it was determine that I have Postural Hypotension and I was placed on Pyridostigmine Bromide.
I had also complained that when I looked up slightly my vision would start to turn white starting from my peripheral vision moving to the center of my vision and I would feel like I was about to pass-out. I would look down and it would pass. The cause for this has not been determined. This would only occur when I was standing.
I have had MRI's, MRA's, X-RAY's, ENT and CT's looking for the cause of this passing-out when standing but I had convinced myself that it was just another nerve problem that hadn't been diagnosed as yet. I am not sure know because I did pass-out, but I was sitting, just by looking up slightly and it happened real quick. All the other times I would feel it coming on and had time to look sown and stop it.
I now believe this may be a vascular problem that's gone undetected after the VA ER doctor put into his notes that I had Vertebral Basilar Syndrome.
My question is, are there nerve problems that can cause this passing out with just a slight backward movement of my head?
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Unread 02-15-2013, 03:34 PM   #2
mrsD
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Welcome to NeuroTalk:

I am sorry I don't know much about testing, as I only had one
EMG of my arms a LONG time ago.

But for your hypertension...I will ask if you are taking an ACE inhibitor drug? I am recovering from a severe drug reaction to
my long term ACE inhibitor use of over a decade. There were many "fainting" feelings, strange sensations when bending over, and many muscle spasms all the time. This was due to an overabundance of bradykinin, which builds up in some people, taking these drugs. The ACE inhibitors were developed from snake venom, which causes a bradykinin reaction, and shock in victims bitten by the specific viper studied. In some people, there is a lack of the enzyme to degrade bradykinin, and with time it can build up causing all sorts of full body sensations, and derangements in blood flow.
Capoten, Vasotec, Lisinopril, Accupril, Altace, are some of the common ones.

So first off if you are using one of these, get to the doctor ASAP and get that changed. Your global, symptoms might correct themselves if this is a problem.

If not, then we move on to other potential issues. Others here can address your testing experience and will be along eventually.
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Unread 02-16-2013, 06:07 AM   #3
FirstOldOne
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Quote:
Originally Posted by mrsD View Post
Welcome to NeuroTalk:

I am sorry I don't know much about testing, as I only had one
EMG of my arms a LONG time ago.

But for your hypertension...I will ask if you are taking an ACE inhibitor drug? I am recovering from a severe drug reaction to
my long term ACE inhibitor use of over a decade. There were many "fainting" feelings, strange sensations when bending over, and many muscle spasms all the time. This was due to an overabundance of bradykinin, which builds up in some people, taking these drugs. The ACE inhibitors were developed from snake venom, which causes a bradykinin reaction, and shock in victims bitten by the specific viper studied. In some people, there is a lack of the enzyme to degrade bradykinin, and with time it can build up causing all sorts of full body sensations, and derangements in blood flow.
Capoten, Vasotec, Lisinopril, Accupril, Altace, are some of the common ones.

So first off if you are using one of these, get to the doctor ASAP and get that changed. Your global, symptoms might correct themselves if this is a problem.

If not, then we move on to other potential issues. Others here can address your testing experience and will be along eventually.


The med's I am currently on are:

Omeprazole 20mg 2Xday
Metoprolol Tartrate 12.5mg 2Xday
Metformin HLC 1,000mg 2Xday
Pyridostigmine Bromide 60mg 2Xday
Rosuvastatin CA 10mg day
Asprin 325mg day
B12 monthly
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Unread 02-16-2013, 09:37 AM   #4
pabb
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Quote:
Originally Posted by FirstOldOne View Post
Hello
I am new here and I need help in understanding my nerve problems.
I am a 65 year old Vietnam veteran under the care of the VA system.
I have been diagnosed with the following:
Type II Diabetes
Peripheral Neuropathy of lower extremities
Autonomic nerve dysfunction (Postural Hypotension)
Myathenia Gravis ( I believe this to be an incorrect diagnoses as I will explain)
Cervical Laminectomies at C3-C5
CAD
Sleep Apnea (On BPAP)
CABG X2
Hypertension
Tinnitus
And others that I do not believe are relevant to my question/questions.

1st question has to do with a recent exam, by a different VA Neurologist, that was ordered by my VA Neurologist.
After almost 3 years of me trying to get someone to check me for the muscle spasms (they occur all over my body and hammer away like a jack hammer, some times the same area continuously for day's and some times they spasm and then just lock-up like a cramp) I got the attention of my VA Neurologist, at my appointment in January, when I explained to him what was happening.
I informed him that I had grown accustomed to the spasm's and did not fell them every time unless it was a new one or when something was pressing against the area where it was occurring. He asked me where were they occurring the most and I said lately it has been in the back of my upper arms and shoulders. He placed his hand to the back of my upper arm and sure enough there were some muscle's that were hammering like a machine gun. I had not felt it until he placed his had there.
This got his attention and he scheduled the exam ( I had this exam done 2 years ago for Neuropathy). It was what was done in this exam, it was the shock & needle exam, that I have a question about. When the Neurologist doing the test looked at the paper work he asked why was I having the exam again when I had the same 2 years previously and I informed him that it was ordered by my VA Neurologist because I was having muscle spasm's.
In the process of testing me he would insert a needle in an area and instruct me to move a toe, leg, foot or arm, in a direction as far as I could. I would do this and he would demand that I move it further but I could not so he would take his hand and force further movement and he really worked hard at doing this until he seemed to be satisfied with the results he was monitoring of the test screen. He did this on upward movement of big toe, downward movement of knee, upward movement of foot and resisting the outward movement of my arm.
So, my question is, is this the correct way to test nerve conduction or should it be done testing the movement that I could do and not the movement that he forced the muscle's too?
He did inform me that there were no changes except that there was indication of upper arm nerve damage now. He is also the same person that did this exam 2 years ago.
My Neurologist had diagnosed me to have Myathenia Gravis prior to this test because he had asked me if I have had any weakness in my legs and I said that occasionally my left leg would turn into a noodle for an instant when walking. I have looked up the symptoms of Myathenia Gravis and the leg weakness is the only symptom listed that I have but it's not a continuous weakness.
I just had an event where I passed-out and a VA ER doctor has diagnosed me to have Vertebral Basilar Syndrome and I looked this up and the noodle leg as well as the other symptoms listed, I do have.

2nd question, I complained for over a year about me having a felling of passing out, when I bent over or squatted down to pick something up, and I was given a tilt table test by an outside Neurologist for the VA twice now and both times it was determine that I have Postural Hypotension and I was placed on Pyridostigmine Bromide.
I had also complained that when I looked up slightly my vision would start to turn white starting from my peripheral vision moving to the center of my vision and I would feel like I was about to pass-out. I would look down and it would pass. The cause for this has not been determined. This would only occur when I was standing.
I have had MRI's, MRA's, X-RAY's, ENT and CT's looking for the cause of this passing-out when standing but I had convinced myself that it was just another nerve problem that hadn't been diagnosed as yet. I am not sure know because I did pass-out, but I was sitting, just by looking up slightly and it happened real quick. All the other times I would feel it coming on and had time to look sown and stop it.
I now believe this may be a vascular problem that's gone undetected after the VA ER doctor put into his notes that I had Vertebral Basilar Syndrome.
My question is, are there nerve problems that can cause this passing out with just a slight backward movement of my head?
the dizzies maybe coming from your neck. I "looked" around a bit on the EMG question, didn't find any were external force was used. It is after all, supposed to be a measurement of contraction of the muscle....good luck
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Unread 02-16-2013, 10:19 AM   #5
mrsD
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Thanks for the drug list.

I see some problems there.

1) Crestor! With a diagnosis of CAD, you are naturally going
to be forced to take this. There are studies that show this drug can lower cholesterol, with much smaller doses. 5mg 3 x a week is one example.
Ideally getting away from statins may help since they cause all sorts of problems. Also all statin users should be taking a
good CoQ-10 product. This is because statins block your own
ability to provide CoQ-10 for your own metabolism. There are new water soluble forms of CoQ-10, that allow for lower doses being more useful... Qunol, and Q-gel are examples. 100mg a day of either of those should be considered by you.

This recent paper has 2.5mg of Crestor, effective!
http://www.ncbi.nlm.nih.gov/pubmed/21498906

Also with your muscle problems...have you had CPK testing to see if it is elevated? Statins can have serious effects on muscle tissue.

If you search the term "statin" here you'll find many discussions. Dr. Cohen in his books, has stated that many doses of drugs doctors use are too high. That the doses chosen by drug companies are arbritrary.

http://www.amazon.com/about-Statin-D...=Dr.+Jay+Cohen

http://www.amazon.com/Over-Dose-Dr-J...=Dr.+Jay+Cohen

This is Dr. Cohen's website:
And what his opinion of Crestor is:
http://medicationsense.com/articles/...tor_truth.html

And keep in mind that statins raise blood sugar, we now know.


Where you are today... diabetes, coronary heart disease, and now PN symptoms, is a tough place to be. I call it the Medical Bind. You may not be able to change your treatments by very much, so at least you should take the nutrients the your strong drugs deplete. CoQ-10 for statin use.

Next is B12.... once a month may not be enough for you since you take metformin. Metformin AND Prilosec (your high dose) deplete B12 by impairing its absorption. Did you have a B12 test to see what your level really is? You must get one ASAP, and don't get it when you have your injection. Do the blood work a week before you are due. The average treatment of one injection a month, is not adequate for all people.

If you have trouble methylating B12 and folic acid which is a genetic condition, your CAD could be a result of that. The non methylated B12 injection using cyanocobalamin may not be working for you at all in that case. So taking ORAL methylcobalamin DAILY would bypass this metabolic error.
This is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

These are the nutrients your high dose PPI acid blocker, Prilosec interferes with.

B12
folic acid (also available OTC as methylfolate, a superior type)
calcium
magnesium
zinc
iron
and some of the trace minerals it is thought now.

Magnesium is especially important for muscle functions. When low you can have severe twitching and cramping. Magnesium is lost in the urine, by diabetics for some reason. So serious consideration should be made by you to try magnesium as a supplement.
This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
Start eating foods that provide this better. And consider a good chelated form, NOT OXIDE which is laxative, at 1/2 the RDA which is 200mg a day. (about 400mg is RDA for men).
Some of us use a lotion or cream form that you can rub onto your muscles areas. You can also take a bath in epsom salts to get started. Lukewarm water, not hot, and about 6 oz of epsom salts to a bathtub size soak. Some of the magnesium will get into your body this way and relax some of those muscle issues.

I would seriously suggest you visit our Myasthenia Gravis forum and discuss your muscle testing there (the EMG for that is called a SFEMG), and your dosing of the Mestinon.
our MG forum:
http://neurotalk.psychcentral.com/forum77.html

Remember, you are in a complex situation, with possibly several things going on, and drug generated potential side effects.
You need to do alot of homework, and we do have lots to read about here for starters. I try to choose the best medical links, for our readers. So you will have to do some of this homework based on those medical links.

Most doctors do not treat nutrient induced side effects from drugs. They just don't.

Here is a complex listing of some of those side effects:
http://www.chiro.org/nutrition/ABSTR...orticosteroids
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Unread 02-16-2013, 10:22 AM   #6
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Default EMG/NCV testing

Here is a site you might want to explore.

http://www.webmd.com/brain/electromy...uction-studies
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AKA Hereditary Motor Sensory Neuropathy (HMSN).

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Unread 02-16-2013, 07:06 PM   #7
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Thank you mrsD, and the others, for this is more information than I have received in the 3 years of VA care.
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Unread 02-17-2013, 06:44 AM   #8
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Also, it is possible your muscle twitching and other uncomfortable symptoms are due to the side effect profile of
Mestinon.

http://www.mestinon.com/
Quote:
Additional side effects of MESTINON® are muscle twitching, muscle cramps and weakness. MESTINON® is mainly eliminated unchanged by the kidney. Therefore, lower doses may be required in patients with renal (kidney) disease.
If you really don't need the Mestinon, taking it would give far more side effects. This drug is quite potent, and affects the
parasympathetic nervous system, increasing acetylcholine at the neuromuscular junction.
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Unread 02-18-2013, 08:30 PM   #9
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Hi, FirstOldOne. Do you have a more "informal" name? Welcome to the forum.

First of all, I'm sorry you are going through so much. And I honor your service to our country in Vietnam. My Dad was one of the representatives to the Paris Peace Talks for Vietnam, so my heart always goes out to VV's.

It sounds like you have more than one thing going on.

I have MG and have had many EMG's (RNS and Single Fiber EMG). It's not clear from what you describe which test you had. In a SFEMG, you have to, for example, lift up a finger in your hand while they are testing your forearm. More isn't better with the test and it sounds like the person doing your test was being, well, a jerk. Was this person an MG expert? Do you have your test results so that you can say for sure what test it was?

If you don't have your records, get them!

Did they say you had MG? MG is all about weakness that gets worse upon exertion/repetitive activity and relatively better with rest. Do you get worse after you do an activity, like walking up stairs? MG is fatigable weakness where most other diseases have more of a "fixed" weakness.

Did they check you for Acetylcholine Receptor Antibodies or the MuSK Antibodies for MG?

What does the Mestinon do for you? What dose do they have you on? What side effects are you having? I had to laugh at what you said, Mrs. D., about it being potent since some docs treat it like it's a placebo.

I have absolutely no side effects of Mestinon other than it makes my muscles stronger. It kicks in after about 15-30 minutes and then starts wearing off two hours after that. If you suspect you have MG, you need to see and MG expert!

I agree with Mrs. D. about the B12. I had a deficiency years ago and I need to take the sublingual methylcobalamin daily in order for my B12 dosing to be sufficient. The fact that you still have a peripheral neuropathy means that you either aren't taking enough or something else is causing it. I get my B12 (Jarrow Formula, 5 mg. sublingual) at www.iherb.com because their prices are so good and if you get a certain amount, you can get free shipping. You might even need 2-5 tablets three times a day for awhile. You put it under your tongue and it absorbs into the bloodstream. Believe me, it not only works better than shots but then you don't have to have the cyanide that is used in the purification process of the cyanocobalamin shots!

I'm not a pharmacist but I would question WHY they have you on so many drugs. Have you asked your prescribing doctors why? Sometimes doctors think that more drugging is what's needed instead of more thinking.

Has anyone checked your vitamin D level? A deficiency is quite common. What about celiac disease? What's your ancestry? People of Northern European ancestry are at a higher risk of celiac disease.

Did they look for a cause of your high blood pressure?

I hope you have a primary doctor who you can trust and can help you figure all of this out. If I can be of any further help, please let me know. I am usually on the MG forum but have been a bit busy of late. You need someone to go over everything that's going on and make sure that something isn't being missed. AND you need to see your medical records for yourself. Doctors can do a lot of great things but patients need to be assertive in their own care - as it sounds like you are doing - in order to get the best care possible. Hang in there. And get some B12!!!


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