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Old 07-14-2008, 10:38 PM   #1
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Neuropathic troubles progressing, concern growing

Hello, was wondering if my symptoms are happening to anyone else and what I might have..First, heres the history..

Forty four year old female

A year and half ago I went from being pretty healthy to all my joints in my body aching, extreme fatigue in the muscles of my legs and burning sensations in my hands..crawling chill sensations in legs and trunk area.I have no insurance but went to the doc anyway, a rarity for me, he ran a few blood test for arthritis and something called a said rate? anyway, he said he couldnt see anything there and told me short of bunches of test he really didnt know what it was and I went home.

I had the problem for about 8 months, just as that was subsiding I developed a daily chronic headache on my right side. I had shocking throbbing pains, burning all around my ear and areas around my eye, also was developing the burning in all areas of body but mostly on left side..its like lemon size spots of hotness, they only last for a few seconds...also was having double vision and severe chill sensations mostly on head area that hurt and legs..

I again went to the docs, we went through a regiment of medicines, depakote 4 months and then other migraine drugs.I also went to the eye doc, he said he didnt understand why I would be having double vision, sent me home.. another few months went by with no relief, infact was getting much worse

About 4 months ago the head problem started in on my left side of head ear face etc...It had been ten months of chronic pain and I was at my wits end. I went to the neuroligist..

She suspected MS, wanted me to do a MRI and I did, she said it was clear, then she did a bunch of expensive blood test and put me on amitriptiline for the nerve pain..Also told me to see the eye doc again..For about eight days the medicine made the head problem near unbearable but then it started to work!!! It hasnt stopped the burning sensations but has calmed in down just a little, but the throbbing nerve pains are almost gone, still having headaches a bit, but so much better I was and am thrilled for that, been taking for 5 weeks, it has been a very difficult drug for me to get used to, has my blood pressure really low and causes nightmares and vivid dreams and the dry mouth is horrid, she said the side effects would take some getting used to..she was right....

I went to eye doc, only been eight months since I had seen him but he said I needed glasses, gave me two pairs, upclose and distance and said it should help the double vision, I think its helping as it the double vision doesnt happen much with the glasses on...

The burning sensations are travelling about the body and on both sides now though still most on left side also am having the leg fatigue and joint aches starting back in, hips hurt and I feel like I went skiing in the muscles that join that area..they are not sore to touch, just fatigue fatigue fatigue when I walk, stand still or lean over to brush teeth..thats when it starts to quiver and shake..very wierd..Anyway, its the same thing that struck me almost two years ago..I am really concerned..I went back to neuroligist and asked her what she thought...she said she didnt know what it was, that we are just treating symptoms for now! I am so confused and and scared by all this...I had been doing pretty good until the muscle thing started again..Now I know they are connected..up until now I wasnt sure.

I keep dreaming that I have progressive MS even though doc said MRI was clear...she is being very noncomittal on all this, I guess she really doesnt know..I thought I was in the clear on the MS issue but I read on the net that MRI can be clear and it still be MS, particulary if over 40, I havent spoke to doc about this but am concerned as my symptoms point to that....she didnt mention anything else that it could be, maybe she is trying to spare me the fear,

SO heres the questions, does anyone else have these symptoms and if so what is your diagnosis?

Also do my docs responses seem normal to you guys?

Her reccomondation was to get a job with insurance, will they cover me for test etc being as I am already seeing doctor for symptoms?

I dont think I could work full time, I am a bit a train wreck over here...but if I could get insurance it might be the thing to do, my savings are getting eaten up!

I should stop now, this is very long and windy,,sorry for that, I will greatly appreciate any responses, thanks Kat

 
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Old 07-15-2008, 05:08 PM   #2
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Location: Ottawa, Ontario, Canada
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lynxgal HB User
Re: Neuropathic troubles progressing, concern growing

Hi Kat,

Sorry to hear you are having a hard time of it right now. I can honestly say that I am experiencing some the the symptoms you mentioned. See my signature for the short list of symptoms. These are the ones that bother me the most.

I also get the weird chill feeling in areas of my body. The right side of my face feels like novacaine wearing off but that sensation comes and goes. I have muscle twitching body wide that never seems to stop. Mostly a constant vibration sensation that usually just sticks to the feet and legs but it can travel as high as my chest. My newest symptom is my right forearm feels like the skin is really tight from the elbow to the thumb joint. I am frequently apply cream thinking it is dry skin...but it does not relieve the sensation,

I was thinking that I could have MS as well but I finally had a nerve conduction study done due to the numbness in my right foot. It came out positive for a sensory motor polyneuropathy. Now we just have to figure out what is causing it. I can't figure out how my head issues figure into the PN but hopefully the doctors will eventually sort it out.

I can't offer too much in the way of advice but I wanted you to know that you are not alone. From my experience...the doctors do tend to take it slow and be cautious. Frustrating as it may be keep after them. You know your body and you know something is wrong. Keep a journal of all your symptoms when they start and how long they last. Bring it with you to your next doctors appointment and use it as a reference when you are with the doctor.

(hugs)
__________________
~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 07-16-2008, 01:09 PM   #3
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pomalley80 HB User
Re: Neuropathic troubles progressing, concern growing

did they test you for lyme's disease?

 
Old 07-17-2008, 10:52 AM   #4
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Gazin HB User
Re: Neuropathic troubles progressing, concern growing

Quote:
Originally Posted by pomalley80 View Post
did they test you for lyme's disease?
I think neuro checked for that, but I admit to not being sure..I will ask her....

Thanks for both of your responses, will write more when I can cope..my head is splitting and I am not functioning to well....so sick of all this..thanks again, Kat

 
Old 07-17-2008, 11:59 AM   #5
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Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Neuropathic troubles progressing, concern growing

Hi, do you know what your B12 levels were when tested ? B12 defiency isn't always the answer but a very important one to cover, Japaneses PN experts say a score of under 500 is suspiciuos of b12 defiency.

Best of luck anyway
Aussie

 
Old 07-18-2008, 01:07 PM   #6
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Smile Re: Neuropathic troubles progressing, concern growing

Kat,
Your symptoms sound exactly like mine. I have been diagnosed with painful neuropathy and am scheduled for an MRI to start the diagnosis process. 2 years ago a neurologist said it was caused by too much B6 in my system. I quit taking the centrum daily but it not only hasn't gotten better.... it's gotten worse, exactly the same as your description.

I do have spinal stenosis in the lumbar (low back) which can cause the lower body neuropathy and the doc thinks maybe I have it in the cervical spine as well which would be causing the upper body neuropathy. The MRI will tell.

As I am 49 I'm probably a little old to be diagnosed with MS. I have read that besides an MRI, a spinal tap can be done to check for high levels of protien in the spinal fluid. This would indicate MS.

Have you looked at the symptoms of fibromyalgia? Look for the diagram showing painful spots and see if it matches yours. I experience all of them. I'm not saying I have it, though Fibro is frequently associated with injury to and conditions of the cervical spine.

I know how scary all this is. I have even started having trouble breathing when my posture isn't correct or I'm wearing anything constricting in the abdominal area. I've started journaling my pain and sypmtoms to take to my doctor hoping it will help us nail this thing down. Not knowing causes a lot of fear and worry. It's hard not to obsess when it's constant and getting worse. Unfortunately the fear and worry only exacerbate my symptoms.

Find a good doctor that takes you seriously. From what I heard finding the underlying cause can take a long time or not at all, but sometimes the doctor gets lucky and finds it right away. I wish you luck!
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Last edited by LaurenH; 07-18-2008 at 01:10 PM. Reason: misspelling

 
Old 07-22-2008, 05:26 PM   #7
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Re: Neuropathic troubles progressing, concern growing

I have CIDP ( Chronic Inflammatory Demylenating Polyneuropathy) that affected both sides when I was first diagnosed. I had the spinal tap and it was normal. Have you ever thought about reading on Miller Fisher? They also might have variants of it to. To see if it matches your symptoms because that cause problems with the eyes also.

I hope you find answers

Sue
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From Cornwall Ontario
With CIDP, Chronic pain, ADHD, Severe anxiety, Depression and Hearing problems

 
Old 07-23-2008, 10:14 AM   #8
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LaurenH HB User
Re: Neuropathic troubles progressing, concern growing

Hi Sue,
I've never heard of Miller Fischer....What or who is it? I dont' have eye problems other than that which are normal for my age.

Had the MRI yesterday. Hopefully the dr. will have it back by the end of this week. The vibrations of the MRI actually caused some muscle spasms and twitching. My back hurt so badly afterwards. I must be really different than most because it's not supposed to do anything like that. OH well, no big deal, just thought it was weird.

Thanks for the info, I'll google it.

Lauren
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Old 07-24-2008, 04:52 AM   #9
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Re: Neuropathic troubles progressing, concern growing

Hi Lauren I should have said that my response was to Kat sorry about that.

Sue
__________________
Sue
From Cornwall Ontario
With CIDP, Chronic pain, ADHD, Severe anxiety, Depression and Hearing problems

 
Old 07-26-2008, 07:48 AM   #10
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LaurenH HB User
Re: Neuropathic troubles progressing, concern growing

No Problem Sue. I should have realized considering the thread. Sorry, I'm a little self absorbed at the moment LOL ;O)
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