I need help or support!

[vlhperry]

I have been in tremendous pain when I wake up in the morning, mostly in my back. I have been complaining to my neurologist of backpain for many months as well as dealing with frozen shoulder. On Tuesday my husband took me my home clinic and I saw a doctor (not my primary doctor). He have me a full exam, checked my reflexes, checked how strong my leg muscles and looked into my eyes with a bright lite. When he pressed on my left hip I felt extreme pain. He then sent me down to X-ray for a picture of my spine. To make a long story short, he diagnosed me with the name of a disease that was so long I could not pronounce it, much less remember it. He told me it could easily be treated by a short triial of prednazone. He also typed out a letter to my Neurologist, whom I had an appointment with next day. He told me two of the meds she had prescribed for me, Valium and Clonazepam should never be prescribed togeather because it could cause the illness. He requested her to call him.

I gave the information as well as the X-rays of my spine to my neurologist's nurse. Up to this point my neurologist had been telling me there was no problem and providing me oxycodone to deal with the pain. I can barely walk in the AM and no longer walk my dog. Also my primary care doctor has prescribed Sertraline for high cholerteral and says I am prediabetic. My pychologist has me on zooloft for depression. My neurologist said she doubted his diagnosis but not averse to allowing me try the prednizone. She promised to call the other doctor first thing in the AM. She also suggested I call my pschologist, however she was the prescribing physician for both the valium and clonazapam. Ny husband also requested the Dr. who diagnosed my unmemorable long word problem that I had been diagnosed with pre-diabetes. He did this because I looked up the name of the illness online, and the symptoms fit me to a tee, however it warned that prednizone should not be given to diabetics. This morning my clinic called and insisted I had to come in immediately for some lab tests and to make an appointment with the diagnosing physician. They won't know the lab results until Monday. Meanwhil I as in the snare that PDtalked about. The diagnosed illness makes all your arteries inflamed.The pain is unbearable. Any ideas, anyone? Anyone?

Vicky

My husband called several times during the day to my clinic and they said that the neurologist never called

[chasmo]

you live near the Mayo clinic, correct?? I'd suggest you go there. There the doctors at least talk to each other. I'd go online and check for drug interactions if you have not already done so.

You are in my prayers

Charlie

[Jo*mar]

Was it some sort of vasculitis?

Or if you can get the name of the condition from the Drs office - I'll be happy to look up info for you.


[ Vasculitis

Also called: Angiitis, Arteritis

Vasculitis is an inflammation of the blood vessels. It happens when the body's immune system attacks the blood vessel by mistake. The cause is often unknown. Vasculitis can affect arteries, veins and capillaries. Arteries are vessels that carry blood from the heart to the body's organs. Veins are the vessels that carry blood back to the heart. Capillaries are tiny blood vessels that connect the small arteries and veins.

When a blood vessel becomes inflamed, it can

* Narrow, making it more difficult for blood to get through
* Close off completely so that blood can't get through
* Stretch and weaken so much that it bulges and may burst and cause dangerous bleeding inside the body

Symptoms of vasculitis can vary, but usually include fever, swelling and a general sense of feeling ill. The main goal of treatment is to stop the inflammation. Steroids and other medicines to stop inflammation are often helpful.

National Heart, Lung, and Blood Institute]
http://www.nlm.nih.gov/medlineplus/vasculitis.html


http://vasculitis.med.jhu.edu/typesof/typesof.html

[paula_w]

Vicky

It sure sounds like your doctors all need to talk. Not knowing what your condition is, I can't help there but have a very bad back and am going to a pain management doctor next week for possible epidural shots.

Yours sounds like something that can be treated tho. Just throwing this in if you end up with something chronic where pain management is necessary.

paula

[BEMM]

Dear Vicky,
Is it maybe Polymyalgia Rheumatica??
My husband had it - it is very painful, very debilitating, but fortunately almost 100% temporary. I think it is not 100% curable, since it may recur, but the later bouts are short and mild.

I am so sorry that you are in so much pain - whatever is causing it. PD is bad enough by itself. And we could certainly do without the inattention of doctors to the danger of mixing meds, and without the fragile egos of some doctors.

I agree with Charles: Mayo is the place to get things sorted out.

Good luck and good mending and all the best,

birte

[vlhperry]

Birte gets an A in diagnosis. That was the name. The problem is it is curable but my prediabetic condition makes the treatment unavailable in my case. Will suffer through week-end and let you know blood test results on Monday.

Thanks,
Vicky

[harley]

now i know how you been. one suggestion, find an internal specialist. they know the chemistry of all your innards and when meds get outa whack they can fit puzzle pieces together. also, be careful weaning off of clonazapan or any benzo. go slow. withdrawel includes pain. i know, i just went through it. you cant really do much but allow time to heal that one. find also a psychiatrist familiar with pd. they are the ones who perscribe anti depressants, etc. cant remember but have you ever had any brain trauma? this makes the brain more sensitive to meds. my guess is alot of this is med related

[therese]

Vicky...I was about to post the name, polymyalgia rheumatica because the description of your symptoms definitely "fit" this condition. I remember so well..my brother telling me that he had polymyalgia rheumatic...how painful it was...but, as birte mentioned. i.e., that it is temporary...it WAS temporary with my brother and it never did recur. I just wanted to pass that information on to you thinking that it could be hopeful/helpful for you...just knowing that the possibility/probablity of its recurring could ease your mind...and not to in any way minimize your post, Vicky...but, have I at least earned an A- for knowing the name of the condition? Hopefully, your doctors will be able to come to some agreement about what can be prescribed for you without any concern for medication contraindication.

Therese

[vlhperry]

Therese,

Who came up with the diagnosis is a tie. I know that prednosone is the treatment and that it will work immediately. The problem is I am pre diabetic and taking prednosone will push me over the edge.

Laura, you also are right. The doctor who diagnosed me suggested it may have been aggravated by taking Clonazapan and Valiem together at the same time. I will have to wait until Monday for my blood test results to decide how to proceed.

In the meantime I have been reading a book called "Suffering in Slow Motion" by Pamela and Richard Kennedy which is about a family chaged by the father diagnosed with Frontal-Temporal Dementia in the prime of his life. The book is written by all the family members. Athiests or others not of the Christian may not enjoy this book.

I love his defention of courage, "Courage is fear that has said it's prayers."


Vicky

[pegleg]

I was drawn to your thread because of several reasons - mainly because I count you as a friend that was in need, annd because my husband has diabetes.

First, let me warn you (which I am only doing for those who don't know this rule) to not use our advice as your doctor. Let a professional take care of it (Charlie's advice sounds great).

The whole Western World approach of "doctoring" needs a good kick in the pants. We go to a specialist who refers us to another, who refers us to another. Before long the right hand doesn't know what the left does! So be careful that you keep ALL of your doctors informed (this is not routinely done by the office staff - you must TELL one doctor to send reports to another, etc.). If you don't do this, you can be mixing some volatile therapies. And having one pharmacist is not enough either.

Now, about the prednisone. It is a steroid, and steroids do wonders but should only be used short-term. They will NOT "give" you diabetes, but will elevate your blood sugar (which sounds the same, but isn't). They warn patients not to take them if they already have the disease. And even t hen if proper precautiosn are taken you can still take prednisone.
Quopte from RxList.com:
"If you have diabetes, this drug may increase your blood sugar levels. Check your blood (or urine) glucose level frequently, as directed by your doctor. Promptly report any abnormal results as directed. Your medicine, exercise plan, or diet may need to be adjusted. "

One final comment, I have horrible pain when I awaken, also. It's similar to when I have a severe "off" time, only worse. On my own and after consulting a neurologist, internal medicine doctor, pain management specialist, neurosurgeon and an allergy specialists; I have determined that I have "off" dystonia. When my body is without ample dopamine (such as overnight), I have the wrything, painful contortions of dystonia. When my dopamine levels go up, my pain subsides.

You might observe if this is what is happening to you. As far as I know the only treatment for it right now is L-dopa (sinemet brand name), pain-relieving medications, and DBS (deep brain stimulation).

Best to you! ;)
Peggy

[ol'cs]

Vicky, Sertraline IS Zoloft, are you taking two scripts? Sertraline is an antidepressant (SSRI type), not a hypercholesteremic. Clonazepam is a benzodiazepine just like valium, the two together would just give a potentiated effect, not CAUSE anything (valium usually 5-10 mg tabs for anxiety and klonazepam 1-2mg for "the shakes) the LD50 for klonazepam is around 2g, so it's a relatively safe drug, and it takes a lot of valium to do any harm also. Prednisone is an antiinflammatory of the steroidal class and is effective for acute pain, but not used for chronic pain. Narcotics like vicodin and percodan are weak pain killers and contain a lot of NSAIDS.
What you need is 20-40mg tabs of A slow release Narcotic like oxycontin for moderate to severe pain.
Please go to a good neuro and find out what the heck is going on. The pain is partly or wholly neurogenic and very real, a lot of us parkies suffer from chronic pain. If lest untreated , it WILL drive you bonkers:(

[reverett123]

of presriptionpaddia overdoneia...
If you are taking all those you are badly in need of someone to take charge of all that. The suggestion to go to the Mayo folks and get somebody to coordinate all of it is a good one. Just the oxycontin is a big red flag. Addictive as hell. Big time. And the SSRIs can be very bad news when you try to stop them too. Some folks need many months to back off them.

[pegleg]

reverett
you have one heck of a poiint. I am convinced my drug mix is 50% of my problem - MAO-inhibotors, SSRI's, agonists, etc. but I am hooked! It would take a lengthy hospital stay to get off some of this (been taking some for 10 years!)

Has anybody ever read Kevin Trudeau's(sp?) book, Natural Cures? If so, what do you think? It slams the drug industry and FDA. It's been on the New York Times best seller list (which doesn't validate it - just shows the interest)
Peg

[olsen]

Hi VIcky, just sent a long private message to you concerning statins and myalgias, neuromuscular diseases....madelyn

[EmptyNest68]

Hi Vicky-
You are in my prayers....hope you are feeling better soon.
God bless-Steph :hug:

[mamafigure]

Just wanted to let you know that I have been thinking about you. I apologize for not posting any support before.

[AnnT2]

Vicky -

Hi. Have you tried the prednisone? If so, did it help. I too awaken every morning in great pain. It used to almost totally subside within an hour or so, but now it lasts most of the day. I am anxious to learn how you are doing.

Ann

[vlhperry]

Hi Folks,

I found out that the blood speciman showed quite the opposite results of what it would have been if the first doctor was right; Polyfibramy*****.!!
Quite the opposite. Also I AM NOT DIABETIC. Prediabetic. More physical therapy.

Thanks for all the suggestions. My neurologist agreed to allow me try prednasone, but I said no.

We have been having severe thunderstorms and I missesed the eclipse Paula spoke of. The sirens just went off again, so better unplug my laptop.

Thanks to all you wonderful folks,
Vicky