Hello New Here and Possible PN
 

Hi all, I've been searching for a group to communicate with people who have experienced similar issues as me. This seems like a great support group. I've been going through testing for over a year now and have had so many things ruled out and never a diagnosis. Initially, my neuro thought I might have MS as my symptoms mirrored it and were exactly like my mom's who has MS. That's been ruled out, as well as all the usual suspects: no diabetes, no lyme disease, no autoimmune diseases, no vitamin deficiencies, no thyroid issues, etc. the lists go on. My new neuro thinks I may have PN and I go for the EMG/NCT on the 24th.

I may have separate issues though because I have blurry vision, sometimes see slightly double, and my eyes experience what I can only call sensory overload without there being a reason for it. I go to an ophthalmologist on the 1st.

A mass/lesion/cyst, whatever you want to call it, was found in my spinal tissue in the thoracic region and that causes chest and back pain. But I do not know yet if it can cause the numbness and other symptoms I have in my arms legs feet and hands. I go to the neurosurgeon on the 16th and I'll find out then if the cyst can be the cause of possible PN. Do any of you know if it is possible from personal experience?

My symptoms have been strong since January 2011 and it started noticeably with total loss of feeling in my left arm, the month after that, total loss of feeling in left leg, a few weeks after that total loss of feeling in both left leg and left arm, numbness, tingling. A few weeks after that, tremors from the back of my head to mid spine and down mid arms. After that, cognitive issues that last only a few seconds, like not knowing where I am - that hasn't happened in several months now though. The worst symptoms are uncontrollable shaking with muscle spasms and the left side of my body seizes up and I cannot move it for about an hour. Dizziness comes with that as well.

Now, daily, I experience numbness in both arms, legs, hands, and feet that comes and goes, semi dizziness, imbalance, occasional tremors, shocks, zaps, spasms, tingling, burning, cold spots, muscle weakness, hot hands and feet. I eat healthy, don't drink, don't smoke. I exercise. I just wish I could find out what's wrong with me as I'm beyond tired of being in limbo while doctor after doctor tells me they can't find anything "wrong" with me. If I knew that the spinal tissue cyst was the cause of possible PN, I'd feel a bit relieved. But my vision issues are troubling because I don't think that can be caused by the cyst.

Welcome to NeuroTalk:

First off I'd like to suggest that you get your actual numerical results from the vitamin tests.
Lab results in US still go down into a very low region, and that hasn't been updated for some strange reason. Hence a reading on the lab result of 250 may say "normal", but it really isn't.
The newer guidelines recommend 400 as the lowest normal. People with neuro symptoms may need much higher levels.

Here is the B12 thread that explains:
http://neurotalk.psychcentral.com/thread85103.html

This medical website is for doctors, but is easily understandable for most laymen:
http://www.aafp.org/afp/2003/0301/p979.html

I think this first step should be clarified first off in anyone with symptoms like yours. In fact B12 deficiency is more common today than ever due to all the acid blocking drugs people take every day for heartburn. These drugs impair B12 absorption.
Also low B12 mimics MS, and in fact many MS patients improve when supplementing it.

Another factor may be gluten in food. Some people with gluten intolerance develop nerve damage that can mimic MS as well.
That would be the next thing to test out after the B12.

Thanks, mrsD! My responses to you are below in blue. I appreciate you taking the time to reply to my post.

I am sorry, that I cannot comment on the cyst you have. That is really a specialized thing, and on a message board like this, not a likely question to be answered accurately.

See what you neurologist says. That's all you can do right now.

Neuropathy is a very very complex thing. So many factors can affect the nervous system.

We do the best we can with our collective experience and information we've gathered, but your doctor may be able to
give you different or more details. See what happens at your next visit.

If going gluten free is helping some...I'd continue with it. You can just not get testing while doing that diet. Keep that in mind.

Thanks, mrsD, I see the neurosurgeon on Monday so I'll finally get the answer if the cyst may have caused it or not. My neurologist wanted me to ask the neurosurgeon that and not her. I'm not looking for scientific accuracy here on this forum, I can certainly communicate with my doctors, and I do. Sometimes doctors do not like to give straight answers. I'm here on this forum because there's nowhere else to go where people understand what I'm going through and I'd like to offer my support to others as well who are going through similar situations.

I was just wondering if any members here have PN that came about because of a spinal cyst. I've read conflicting info on it. I don't expect any definitive answers on my specific condition, I don't expect medical advice, it's just great to hear about other people's experiences and to read other people's thoughts.

What did you mean by I can't do testing while eating gluten and wheat free? What kind of testing exactly? I've already been through all my bloodwork, MRIs, etc. before I started wheat and gluten free. Will it affect my EMG/NCT?

There is blood work for various gluten issues.

If you are gluten free, the results may show low or normal.
So if getting the blood work done, you have to be eating gluten containing foods for a while in order for that to show up in the blood work.

If you see some benefit at all, I'd continue with the gluten free diet. If you decide to get testing, 2 weeks or more with gluten back in the diet is what you have to do.

And--
 

--you may be able to get more opinions on spinal cysts or other growths in the spine causing neural symptoms at some of the forums here that deal with that more specifically:

http://neurotalk.psychcentral.com/forum73.html

http://neurotalk.psychcentral.com/forum54.html

I would think that anything that causes compression in the spine or the adjacent nerve roots could cause neural symptoms, depending on where the pressure was, but your symptoms do sound a little more global than one would expect in cases like that (especially the optical ones). Given your family history, the doctors should be monitoring you closely for signs of MS or other demyelinating diseases of the central nervous system; sometimes the original signs of this are rather ambiguous, and there's a lot of controversy in the MS field about "probable" vs. "definitive" diagnosis based on episodes and associated imaging findings.