Neuro confused...I have no answers!
 

I'm new here and looking for some advice.
I'm 42 and recently diagnosed w/severe motor/sensory nerve damage in feet and legs. I've seen two neuros and both have said my case is confusing. I'm looking for some advice as I have no real dx besides polyneuropathy and no plan except to up meds as needed.

Hx
About 12 years ago I had a sudden onset of leg and arm fatigue/weakness. They were looking at MS at the time and after a few years of testing and no answers, I stopped going. My legs have been weak since then but I was capable of working/hobbies/sports.
Two years ago sensory issues started with some burning of my feet - they became red and hot after by the end of the day. Left side has always been worse.
Around Easter of this year, I became a different person. A sudden attack of electric shocks, burning, pain. I didn't sleep for a month due to pain/cramps/twitching/shocks. At the same time I was diagnosed with Diabetes. All of my doctors have said the neuropathy is not caused by diabetes but probably aggravated by it. Since, I have started meds and sugars are controlled w/no relief of symptoms. I believe my sugars have been high for maybe a year max.

I can no longer work, wear shoes except flip flops, walk or stand for long. Taking a shower feels like an event now and at times cant stand the feel of water on my feet. The fatigue and weakness just gets worse - it now takes several days to recover from standing or walking too long - like going to the store AND cooking dinner. Cramps and visible twitching if I do too much. I had a calf cramp recently that lasted 5 days without relief.

I don't know all the details of my EMG but that my motor damage occurred first and is worse than sensory and both are severe. My brain MRI is unchanged from 10 years ago. Blood work fairly normal

My first neuro prescribed gabapentin and tiazidine. I guess they take the edge off at times but not sure they make a huge difference. I was referred to specialist who did 2nd EMG and confirmed my 'confusing' case. Told me to call if I get worse. Said it could be genetic but no further testing is needed. Said I could do spinal tap but would probably not show anything. I have not had lower back MRI done.

Any advice is greatly appreciated as I feel quite hopeless. I have no plan/prognosis/etc.

Thanks!
Carrie

Hi Carrie. I also have sensory motor. I have a variant of CIDP called MADSAM. Sometimes the protein isn't elevated when they test the spinal fluid. I only had a minor elevation. It can be asymmetric. I would get the spinal done and a whole battery of tests to rule out many causes as soon as possible. In the meantime, you may want to avoid certain drugs that are especially toxic to genetic neuropathies. There's a good chance of a diagnosis with a cause that may be treated to stop or even reverse your neuropathy. Sooner is better than later, because if it's treatable, so that no unnecessary damage happens. University hospitals seem to be better for this type of neuropathy because it's not so common.

This is the cidp article, there are tabs to the left and top which include tests and differentials
http://emedicine.medscape.com/articl...erview#showall

This is a listing of Centers of Excellence for best places to go because it is a rare disorder

http://www.gbs-cidp.org/get-support/...of-excellence/

This is the CMT website listing medicines to avoid that may be toxic to genetic neuropathies.

http://www.cmtausa.org/resource-cent...c-medications/

Let me know if you have any questions

Thank you for your response and links!

The 2nd neuro I saw was at KU which is on the list of centers for excellence. I'm not taking any of the drugs on the toxic list.
I'm worried that the neuro isn't being aggressive especially if it is treatable.

Is CIDP genetic as well? Are there treatments for genetic neuropathy?

Have you tried physical therapy? I was curious if this has helped anyone. I have basically been told there is no treatment, just medication.
Thanks!

Glucose control
 

If you had been diabetic for an extended period before finding out, I believe that diabetes can cause Neuropathy. There is a long list of things that can be done to help, but no miracle cures. Your b-12 number needs to be above 400 because b-12 deficiency symptoms can mirror PN pretty closely. I tried PT but found daily exercise just as effective and a lot cheaper. It seemed my muscle recovery was more dependent on nerve healing than physical therapy. I also found value in using Mortons Epsom Salt Lotion on my feet at nightime for burning and tender skin. And as mentioned above, keep sugar under control so no more damage is done. Good Luck, Ken in Texas.

Neuro confused...I have no answers!
 

Hi Carrie,

I too have a diagnosis similar to yours Sensorimotor Polyneuropathy, axon loss in type, severe in degree electricity with regards to the sensory fibers of lower extremities and moderate in degree electrically with regards to motor fibers. I am a diabetic with an A1C of 6.6 . This all came on very suddenly. At first I had restless leg Syndrome then sometimes pins and needles. Then next I knowI have Poly Neuropathy that is severe.

I get the same twitches, shocks, burning always pin and needles. If eat something with sugar flares it up to severe symptoms. Then it depends I may take a Percocet.
Let me know how you control yours. I also take amitriptoline alpha lopic acid.
Ken in Texas knows what he is talking about

Uglogirl

Thank you everyone for replying! It helps knowing there are people out there willing to help/provide input.

All three doctors have said the DM is not the main cause of the neuropathy due to the way it has progressed. My motor damage was first and more severe than sensory. They said it would be opposite if due to DM. They did say that the DM could be making everything worse.
They also said the damage wouldn't be this severe this soon. I also have no reflexes in feet.

My blood sugars were easily controlled w/Metformin. I have been on it for 4 months now with no relief in symptoms. I also don't notice any difference due to what I'm eating but I don't eat much sugar/carbs. I've cut most out.

The drs think there is a combination of things going on which is probably why they are saying I have a confusing case.

I've tried soaking my feet which doesn't help. My main problem is trying to find shoes....any shoe seems to make my feet worse!
Also the muscle cramps and foot twitches prevent me from sleeping. I can't stomach tonic water.

This is the doctor listed who runs the program. He may be especially helpful if the protein isn't elevated, and 20% aren't.

http://www.kumc.edu/school-of-medici...achkie-md.html

CIDP is acquired, although genetics may play a role. Like in taking Metaformin. There are those who believe their cidp was caused by it. But there are many other suspect causes as well. The causes, presentations and degrees are varied

I needed physical therapy. I had to go inpatient for a few months and out patient for another year all together. I like it because they can test your range of motion and gage where your at. Sometimes it's hard to know if your getting better or worse because it can be mixed. If benchmarks are set than progress can be measured. I do Maya Fiennes yoga, modified and swimming to work with all the muscle groups.

Unless you are stable and getting better, I would personally rule out cidp and other known causes. Mayo was able to rule out genetics for me based on emgs that were only seen with acquired. They can appear the same for many. Sometimes it takes a chance with ivig, plasmapheresis, prednisone, and others to see if there's a response. And only then can they tell there's an immune mediated disorder or not.

What are your b12 levels?

Unfortunatly, I am only getting worse.

B12 was 351 but she didn't seem too concerned with that result.
What about MRI of lower back? That wasn't ordered and I was wondering if that would be beneficial?

Thanks for the dr. info at KU!

Your B12 is toooo low!

I was in the 300's too. My doctors weren't concern either. So I wasn't either. That's why neurotalk is so important. You will learn how important taking a methyl B12 on an empty stomach every morning until your levels reach over 1000. Metaformin drains it from you. I took mega doses when I learned how bad low levels can be. I felt improvement right away. I'm sure I can walk on my heels again because of it.

I was given an mri of my back as part of the workup.

Although you did mention some issues in your arms, it seems like most of your symptoms are in the legs. I would certainly think an MRI of the lower back would be justified since no other cause has been found. Some type of lesion in the lower spinal cord could cause many of the symptoms you describe. Bit of a long shot, but certainly something that should at least be investigated.

Impingement-Trauma
 

Two things to check for with MRI. I had nothing wrong until car accident, hard shock up right side. I lied, I was a poor diabetic patient playing games w/Dr. then had car wreck. Trauma induced Neuropathy is a real thing. Good Luck, Ken in Texas.

I bought the B12 but haven't taken much. Didn't think it would make much difference.
I will start tomorrow morning! thank you so much!

300's is low
 

but may not be bad enough to be symptomatic. Mine was 119 at one point and didn't have symptoms until I had a small car crash. I believe that Metformin taken over time can block b-12 absorbtion in a certain percentage of people. I am thinking one-third. So in my book that means if you take Metformin you need to know what that number is. I took shots monthly plus pills and felt improvement over the course of 5 or 6 mo. Good Luck, Ken in Texas.

I question the diagnostics. I've read that everyone in the 300's should be tested for pernicious anemia. I asked the hematologists about it. He did nothing. I regretfully didn't pursue it. I even developed vitiligo while taking b12. The vitiligo stopped when I started the methyl b12. It's so painfully obvious now. I'm with you about monitoring. I don't trust the results of conventional tests after my experience.

Personally--
 

--I think anything up to about 500-550 is suspect--at least if one is eating a diet with animal protein sources in it (vegetarians/vegans are very often affected by lowering B12 levels as they do not get it from diet and we cannot manufacture it ourselves; such people should definitely supplement).

There have been people who have been symptomatic of B12 deficiency even into the 600 range.

I suspect that the original normal ranges for B12 are set too low at that end. Japanese labs, due to the drug-induced B12 crisis that Mrs. D has talked about here, tend to set the low end of their lab ranges around 500-550, and many have no upper limit. (I also think the upper limit of some labs in the 900 range are a little ridiculous--if one absorbs B12 well on a non-vegetarian diet, or if one supplements, especially with a daily B-complex, one's readings are likely to be higher. My wife takes a daily B-complex with 125mcg of B12 in it and her levels are usually in the 1100's. I take methylcobalamin 1000mcg three times/week and get readings in the 1500's-1800's. This, of course, frightens uniformed doctors unless you explain it to them--if they're willing to listen.)

getting to 600, means you could be suffering from b12 toxicity, which can cause pn like symptoms. b12 is a complicated molecule and bacteria produces it

Neuroproblem---- could you please explain this post? Provide links if you can too.

At this time there is no upper limit to B12 levels, established by research.