diagnosis change
 

For 8 years I've been diagnosed with heriditary sensory neuropathy until two weeks ago. My neuro looked in my eyes and decided he'll be doing an MRI after the holidays and now thinks I may have possible MS. What's up with that. Is this typical to start with a neuropathy diagnosis and then change to possible MS......
Cathy

Hi Cathy. Welcome!!

It's not at all odd. Some PwMS also have Neuropathy as well. I hope it's not so, but even if it is, it's not the worst thing that could happen.

Please do come back and let us know what your MRI shows. We will be here for you.:)

Christmas Hugs,

:) Hi Cathy,

WELCOME TO THE NEUROTALK FORUM COMMUNITY! :D

No, it is not unusual to have you diagnosis changed even after years.

In my case I was five and a half years SPMS and then this last April they decided I never had MS and have not come up with a fitting diagnosis. I'm also on SSDI since 2003. They feel my disease(s) may be genetic and that I may be the first in my family to exhibit symptoms. So I don't know what to tell you.

We're all just stuck here in Limboland until they get their acts together and can figure out what is really going on with our bodies. Although the neuros will admit, they don't know everything nor do they have an answer for everything.

On your situation, it doesn't sound that unreasonable to have both only MS would cover more of the symptoms you have probably experienced. It's not a death sentance and you will be able to easily work through many of the challenges of MS and live a normal lifespan.

Good luck to you and please keep us informed.

Hello Cathy,

Welcome to NueroTalk. I'm glad you found us. It's not unusual for people with MS to have Neuropathic pain, or sensory Neuropathy. I hope your Neurologist is doing an MRI with contrast (although, I'm sure he/she is). Whatever your diagnosis turns out to be we are all here for you. If indeed you do have MS, would you consider taking one of the Disease Modifying Drugs for it? Good luck and let us know the results of your upcoming MRI.

All the best,

Chris

I got my MS dx first, then a decade or so later they added the dx Porphyria. Porphyria usually includes neuropathy among its symptoms. I had a bad spell of neuropathy a few months ago while still in Seattle, and had to be in a hospital overnight on a glucose drip, which is the most common "treatment" for porphyria attacks. I am still having the neuropathy in my feet, but it is better, which is sure handy, as I have lots of work to do in my New Mexico home, to which we returned a month ago (we own it, and could not afford even a condo in Seattle unless we sell this house).

Porphyria, Craig, is a genetic illness in most cases (there are a few acquired cases). It can cause myelin sheath destruction, usually in a pattern a little different than the most preferred MS locations. I do have some lesions in the Periventricular areas, but more in other areas I forget right now (Temporal, etc.) Not all people with Porph get the lesions; it is usually in a case like mine where dx is delayed and a lot of damage is allowed to occur.

You might look into Porphyria, as VERY few doctors include it in the differential diagnosis. Most often they say "it's too rare to be considered." We who have it and correspond on the internet know that it is NOT as rare as they think. One doctor we all like says that it's at least 20 times as common as is dx'd. I note on the Braintalk forum (the old forum) that those looking for alternative dx's rarely try porphyria--it's everything else under the sun. Perhaps that is because one of the common syptoms is abdominal pain, probably caused by neuropathy affecting vascular nerves. I myself have passed beyond the ab pain level, probably due to destruction of nerves there and passing the menopause (estrogen encourages porph). I had some neuropathy in my arms most of my life, undiagnosed, but the foot neuropathy has come on later, and is diagnosed as probably part of my porphyria.

It is VERY important, if there's any chance you have it, to look into what drugs are safe/unsafe and what foods encourage attacks and what chemicals in the environment encourage it....

I probably told you this several times before, but it's just something which should be in the differential diagnosis, and I don't remember you mentioning it, Craig.

Mariel

:) Hi Mariel,

That was some good information you posted as I had never heard of it before. I don't seem to have any symptoms of abdominal pain at all. I will still Google it and see what I find and if it fits my symptoms profile.

I appreciate your taking the time to respond and pass this information on to me. In medicine we never know, sometimes, what we have and you're right that many doc's will blow it off as an option thinking it is too rare.

Thank you again Mariel. :D

Hi Cathy,

I was diagnosed with both MS and a hereditary peripheral neuropathy (HNPP) at the same time. My EMGs show peripheral nerve damage, making it likely that I have HNPP like my dad and my cousin. I also passed all the tests for MS -- lotsa MS-specific brain lesions, oligoclonal bands in my spinal fluid, and abnormal evoked potentials.

I see you mentioned "hereditary" neuropathy. Does that mean you've had any genetic testing for it? My dad tested positive for HNPP, so they gave me the dx since 50% of their offspring will have it also.

Here's a short description of HNPP:

http://ghr.nlm.nih.gov/ghr/disease/h...essurepalsies/

The peripheral nerves are all the rest of the nerves in the body that are outside the brain and spinal cord. That means not only the arms and legs, which are common sites of neuropathy, but also the nerves that go to the organs, muscles, and skin.

Just for the sake of general information, here's a good description of peripheral neuropathy from Mayo, including several pages:

http://www.mayoclinic.com/health/per...opathy/DS00131

"The extensive network of peripheral nerves includes the motor nerves, which help your muscles contract, and the sensory nerves, which allow you to feel a range of sensations. In addition, your peripheral nerves help control some of the involuntary functions of the autonomic nervous system, which regulates your internal organs, sweat glands and blood pressure."

The Mayo site goes on to say, "Peripheral neuropathy isn't a single disease, but rather a syndrome with many causes," although in the hereditary cases the cause CAN be found.

I happen to think that MS is also a "syndrome" rather than a single disease, but that's another thread entirely. :)

I've always described HNPP as pretty much MS without the brain lesions, but I've recently read that researchers claim to have found lesions in HNPP patients also. Good luck in your testing, and I hope you don't have MS.

As a matter of fact...
 

As a matter of fact, I have been treated for neuropathic conditions for years...and am only just finding out that I also have MS. Seems that I have had MS since about 1993!!! It is BECAUSE of all of the other conditions that they have missed MS. Lots of things mimic the disease, so they did not even consider it!!!