Hi, New Here
 

By introduction, I am a 47 year old female that has been ill with symptoms mirroring those of neuropathy for almost 20 years after suffering from a monoclonal viral pneumonia. It has waxed and wained over the years. During this 20 year time, I have been diagnosed with tachycardia, migraine, fibromyalgia, (autoimmune) spondylarthropathy and more recently, after a bad attack for which I was hospitalized, gastroparesis. The neuropathy symptoms have pretty much been ignored.

I continue to have worsening recurrences of autonomic instability and have had severe pain in my left arm that has left me with tingling in my hand that will not go away. I also have developed periodic pain in my lower leg and shooting pain under my toes. Every time I turn around, something new and uncomfortable is happening to my body.

I found a good neurologist locally and he did find some problems in the neurological exam (not sure what) and the conduction study was slightly abnormal in the leg. The EMG was normal. He is doing a skin biopsy next Tuesday and I have a list of bloodwork to be done.

My neurologist suggested Alpha Lipoic Acid, 600 mg/day.

I am usually able to push-on and deal but it is getting very difficult to do this lately... I ended my 25 year career a year and half ago and can no longer work.

Just hoping to find some support now as I am so fearful that this will not ever improve and too much time has passed to treat this properly... Thank you for reading... Mere

Welcome to NeuroTalk.

20 yrs is a long time to feel so poorly!

If you are going to have blood work, make sure it includes B12 levels and Vit D. Also thyroid. Fasting Insulin and glucose.

Can you tell us what drugs you take? You can PM me if you want privacy. Sometimes drugs deplete nutrients, and can cause symptoms that way. Some antibiotics are very hard on the nervous system. Fluoroquinolones can cause permanent damage to the peripheral nerves. (Cipro, Levaquin, Avelox etc). Flagyl also has caused neuropathies.

Having a neuropathy is like a detective novel. You have to examine everything. What drugs you use, your environment for toxins or heavy metals, hereditary causes (CMT) and autoimmune factors. Thyroid disease, pre-diabetes and frank diabetes, also can contribute.

Let us know how your tests come out. Ask for the results and don't accept "normal". Some doctors call B12 levels of 200 "normal" and they are NOT. Lab ranges in US are quite antiquated.

Thank you for your reply MrsD... Yes, I take
verapamil 240 mg bid for tachycardia & migraine
Humira injection for arthritis control
prednisone 3 mg for arthritis
ambien at night
MS Contin 15 mg at night
Reglan and phenergan have been prescribed for gastroparesis but I have reservation in taking them on a regular basis.

My neurologist has ordered lab work including,

2 hour glucose tolerance test,
methylmalonic acid, CK, Vit.D (25 hydroxy total), ANA, ESR, FTA, Lyme Western blot, comp. metabolic panel, CBC, SPEP w/immunofixation, SSA, SSB, Vit. E, cANCA, pANCA, ACE level, RF, antiribonucleoprotein, cryogloblins, anti ScI 70, copper.

I have already had numerous studies for thyroid dysfunction and the results are normal. I did work in a manufacturing atmosphere for 25 years, so yes, I have been exposed to chemicals. I can however place a finger on these problems occuring after the monoclonal pneumonia 20 years ago. At that time, I had terrible dyautonomia starting with tachycardia, etc. It did improve somewhat but then returned with terrible occurances in June and September of last year. On both occasions, I had numbness and tingling in my hands, feet and mouth. It eventually left except for the left hand and occurs elsewhere periodically.

My neurologist has advised me to take alphalipoic acid 600 mg and carnitine, 1000 mg (bid).

I feel confident that he is being thorough as this is the first time anyone has shown concern and has ordered many of these studies. I have had the Autoimmune studies and have a few abnormalities there but nothing frank.

Another thing that is bothersome is that I am losing my memory at times. The doctor noted it and my husband has also noticed.

The weather here is so cold this week. It seems to make things worse.

Thank you for reading... Mere :)

I did notice that I had a Vitamin B12 test done a while back and it was 436. After some reading on this Board, I have learned that methylmalonic acid test is more sensitive. It looks as though my Dr. has this covered.

This past Summer, I was found to be deficient in Vitamin D. My Rheumatologist did put me on a therapeutic dosage and the level did return to "normal".

Dysautonomia here, (autonomic neuropathy) and it is autoimmune. Since there are so many autoimmune diseases, it is like flavor of the day, depending on the doc or the test. Looks like Sjogrens, also potential MCTD? Who knows? We will see what the next doc appt. brings.

Had Lyme in '94.

Also have sensory neuropathy.

Hi Cycleops,

I am sorry to hear that you have autoimmune dysautonomia. I have been through a 'flavor of the day' diagnosis with my Rheumatologist over the past six or so years. He feels that I have an autoimmune disease but is not too certain what it is. Mostly, I have problems with my large joints and the humira helps greatly. He calls it spondylarthropathy.

I wonder if my dysautonomia and neuropathy symptoms are immune related. I hope your upcoming appointment is favorable...Mere

Hi Mere,

I am HLA B27 negative, so no spondyloarthropathy. I do have a lot of joint pain, tendonitis and bursitis, with some type of arthritis.

I am diagnosed with a solid case of Sjogren's and then also, MCTD however, that seems to be morphing. Autoimmune disease morphs a lot. I am on IVIG.

Thank you for your support.

400 is the cut off for normal B12...so you are right on the line.

Let's wait and see what the MMA shows.

Cyclelops, I am so sorry to know of your pain...

If you don't mind me asking, do the IVIG infusions help with the autonomic aspect of your disease and does your insurance cover the cost? Mere

Mere, insurance covers it, but it is a constant battle. The docs, both rheumie and neuro want to maintain me on it. The insurance co. denied me over the summer and I had a horrible time, I got worse.

I am due for my infusion tomorrow....I am feeling really hideous right now, so let's see if I improve over this week.

In general, I think it has done fairly well for my neuropathy, as most of my slides occured during times when I was not being infused. My ANA is running high at >1280, speckled and nucleolar.

Dysatuonomia is still an issue, but I went off a lot of pain meds. I am still in pain, but I wanted to find my baseline.

Welcome to the boards Mere--

I am in the in the process of the doctors finding why I have sensori-neuropathy, the NCV confirmed I have it. All my blood work has been normal.

This is a very puzzling disease process. Be patient. It sounds like your doctors are on top of things and doing all the basic tests.

Take care of yourself and let us know what the results are and how you are doing.

lifesaver54

Cyclelops, it must be so frustrating for you to deal with the insurance issue regarding something you so desperately need in order to maintain a reasonable semblance of function...:mad:

I am glad to know that you will be receiving an infusion tomorrow; hopefully, it will help in lowering your very high ANA titer.

I understand about the pain meds. I know better than to take even as much as I am prescribed. I may require more someday and I want it to be effective if that is the case... plus, I want to keep a clear mind and it is already a challenge.

Hopefully, tomorrow will be a better day for you. Mere.

Thank you for your welcome Lifesaver, I may be in the same boat as you. My doctor said that it may take some time to find out the source of the neuropathy and that's okay. I have been ill with this for a long time. Mere.

Dx'ng PN is a 'detective' process of elimination.
There is no - one 'smoking gun' blood test
or any other chemical means to determine it.
It is usually subjective and a compilation of a number of tests that read
both positive and negative. That's why you need a good neuro
who specializes in neuropathies, to treat & Dx you.

Hi Nide44

That is certainly the impression I received from my neurologist. So far, I really like him - seems thorough. Tomorrow he will be performing the skin biopsy.

I see that your location is fairly close to mine (Chesapeake Bay). Are you treated at Hopkins? Mere

I feel remarkably good after this infusion.....hmm. I wonder how long it will last.

Cyclelops, Thank goodness! I hope it gives you some relief for a while...Mere