Idiopathic Peripheral Neuropathy versus MS?

[Hope75]

I bumped:) 32 yo female.  I have had idiopathic peripheral neuropathy for 2 years.  Burning and tingling in the feet, led to the same feelings in calves and hands in a "glove and stocking" distribution.  2 neuros later:  normal bloodwork (no diabetes or pre, thyroid ok, vitamins ok, no metal poisoning, etc) negative VEP, ABR, and nerve conduction studies ok, normal opthalmology exam with Lasik (thorough exam), negative LP, 3 MRIs of brain and spine w/ and w/o contrast show one lesion on splenum of corpus callosum that has never enhanced or changed from an MRI I had for dizziness after the flu in 2003.  I have had classic migraine (goes away after going off the pill) since I was 19 yo. The pain and burning in my feet can be very unsettling, depressing and makes me feel like I am sometimes on the verge of disability.  I work in a healthcare field and I'm very knowledgeable, so no answers = stress.  Yes, I have a history of panic disorder - so that is the red flag that some physicians focus on, a real pity.  I am an intelligent person with medical expertise and they can still write me off as a nutcase, I can only imagine those of you without the degrees that are supposed to garner respect.  My question is:  what is the likelihood that my one, non-enhancing lesion (supposedly they used an "MS protocol" for the MRI) is an indicator for MS?  I AM 99.9% sure it is not MS b/c I am in a high stress position, have low blood pressure and I think I'm hypoglycemic but haven't had a glucose tolerance test.  Migraines can lead to lesions on the brain and my lesion is non-enhancing, non-changing through 4+ years.  So, my theory is:  low blood pressure (nurses always ask if I feel ok after they take my BP:) and stress equals poor circulation to the extremities, namely the feet, which leads to nerve cell death and a small fiber sensory neuropathy.  Two neuros are sure it is not MS, but I just want your take on this.  Either way, we all are dealing with physical issues, chronic pain, fatigue, etc.  I feel your pain!  Thanks for any insight.  Take care all:)

I am adding to the original post - I have these symptoms in a relapsing/remitting fashion.  Some months my feet burn a little and other times I am in serious pain, burning patches all over, chills, fatigue, tremors somewhat depressed due to the relapse,  and my aunt has MS.  So you can see my concern:>)  

[HVAC]

This an old post you can start a new one.

[DocSnopes]

Re your post, I would really emphasize the "respected lab" for Lyme Disease testing that you mentioned. I understand from my doctor, who deals with a lot of Lyme Disease cases and neuropathy, that the standard test kit most docs rely on for Lyme testing misses a large number of infections -- or co-infections, perhaps even most of them, unless the infection is fairly recent.  

A friend of a friend who suffered with "idiopathic" neuropathy for years, and was even tested (negatively) for Lyme Disease at the Mayo Clinic, finally sent a blood sample to a lab in Palo Alto, Igenex, that found he did have Lyme, and he finally got treatment for it and is much better now, despite apparent permanent nerve damage.  I'm in the same situation, and currently awaiting lab results from that lab, with fingers crossed, as I have crossed off the list almost every other possible cause of my idiopathic polyneuropathy, except for hypoglycemia, or possibly RA that didn't show up on the standard tests for RA my neurologist ran. If I do have Lyme Disease, at least there is a hope of curing or stopping the progressing of the disease, which is rapidly taking over my body, having started with one foot, and now in both feet and lower legs, and both hands.

While I began glucose testing a couple of days ago for possible high blood sugar, I was surprised to find my glucose number was as low as 73 or 78 when I went almost 6 hours between meals (+ exercise), and only about 110 to 113 from 1, 2 or 3 hours after a large meal, and I was feeling very shaky and nauseous when it was down to 73 or 78.

[Tertullian]

The symptoms you describe are nearly an exact match with what I have experiencing, with addition that I have some issues in tongue as well. It has been some time since your last post. Interested in what has transpired since 08.

[jensequitur]

Hey, Hope!  I have to agree with Quix on this one - you have definite neuropathic symptoms, but they aren't characteristic of MS.  The symmetrical distribution of your pain and burning symptoms is unusual for MS.

I don't know anything about IPN, but it sounds like one of those kitchen sink designations neuros use when they can't think of anything else.  Follow up on your low blood pressure and hypoglycemia, and do more research into your migraines.  Good luck!

[sllowe]

bump

[Quixotic1]

I have my own story in my Journal.  If you click on my name "Quixotic1" you can read it and see that you and I had similar experiences with an abusive neurologist, despite being colleagues in the medical field.

Q

[Quixotic1]

Hi, I see that you have not had a great early welcome.  Personally, I'm sorry that has happened.  I was fading when your posts first started appearing and just couldn't wrap my head around them, but you deserved a welcome, nonetheless.

I have a little to say about your story.  Your history is of a type of paresthesia and pain that is not characteristic of MS.  The very symmetrical both hands and both feet in, as you rightly call it, a "stocking / glove" distribution is far more suggestive of peripheral neuropathy than of MS.  You mention in your theory of low blood pressure that you have "small fiber" neuropathy.  Has this actually been diagnosed?

Small fiber neuropathy is not typically seen in MS.  I would never say that anything is never seen in MS.  But, it really does cast that in doubt.  I have also heard that it is very hard to treat and I have no personal knowledge or experience with it.

Your MRI has shown just one lesion now for almost 5 years.  I don't know how long someone can go with only one unchanging lesion, but I went 2 and 1/2 years and it was still MS for me.  But, I see the doubt this would cast over a possible MS diagnosis.

I have to say that I don't agree with the theory that chronically low blood pressure would cause this, though it might be nice to think so.  There is no medical entity of low assymptomatic BP.  It actually is common in women and not associated with neuropathy.  But, that isn't really pertinet to your question.

I sympathize with your feeling that if doctors dismiss and mock someone with medical training how much more, in their arrogance might they dismiss people without a medical background.  Having listened to them in their "natural state" (doctors' lounge) I sometimes think the arrogantly insecure ones are meaner toward anyone who could possibly question them.  Behind great arrogance is often a complete inability to accept any intelligent questioning.  That's why we advocate firing those b**tards and finding someone with compassion.

It is so horrible that someone with a history of depression or anxiety is often dismissed without a thought.  This is beyond belief, well not really, it happens all the time.  People with affective disorders can't get sick?  Did anyone stop to consider that chronic intolerable burning is not a symptom of anxiety nor of panic disorder.  I'm so sorry you have had to suffer through that.

So, after reading your three posts, I also do not get any kind of sense that what you are dealing with is MS.  (and my usual disclaimer) But, no one can diagnose anything online, and I am no different.  IT's just that no bells went off as I read your posts.  I didn't see a work up for a couple other things that can cause peripheral neuropathy and brain lesions.  The main one is Lyme Disease and other neurotropic infections, that is infections that have a prediliction for the nervous system.  That is something I would ask your neurologist to do, making sure that you have had a Western blot done at a respected lab for Lyme.

The added element of chills, makes me wonder again about Lyme.  It is not a typical feature of MS.

I hope this has been some help.  We have had others here with small fiber neuropathy and it certainly can be h*ll.  If I got some of you info wrong, let me know.

Quix

[sllowe]

hey Hope,

I'm bumping this again for you.  You know when we don't know the answer, we do this and it sits idle until we have a clue sometimes...ha/ha..

I don't think we've chatted, and i wanted to say hello and thanks for coming along.  That burning is the pits.  

I think jens may be able to add something here for you, I'll inform.  Stay w/us, I'm sure we'll get you some comments real soon.

ttys, be well hanging in there,
Shelly