It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Neuropathy Message Board

Neuropathy Board Index
Board Index > Neuropathy | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Hi Ollie.

It's hard to deal with something so hard to diagnose and to treat, even as it is not considered a life-threatening condition, at least not as an immediate emergency.

But it sure is a life changing one.

I've been dealing with this since January, and as many people in her might have experienced doctors try just to keep up with what seems an invisible enemy.

Without being of any comfort to the diabetic neuropathy sufferers, if they can control their sugar levels, there are great chances at least of controlling progression of the disease. O even in a slowly progressive condition like CDIP there are treatments like IVIG shots and steroids shots, that can even improve condition from not being able to walk to be quite functional.

Being diagnosed with SFN(I'm not), or any other kind of neuropathy, under the "idiopathic" label, means that you can only hope that some treatment nails at least something that could control the terrible symptoms we have.

I'm under a relapse? new episode? a normal process of recovery? that's giving me extra pain and symptoms. My doctor is trying to mix and/or switch between Neurontin and Lyrica, but I do know that this is just an experiment that, if successful, will control my symptoms for a while at least.

CDIP, Muli Focal Neuropathy, Pure Motor neuropathy, not SFN though, amongst other wild guesses to name what's happening to me. Pain, twitches, numbness, weakness, burning, you name it. Everything motor and sensorial is there, fortunately not(knock on wood) a sign of autonomic issues, common in SFN I believe.

Have being tested for almost every possible cause in the book, even a contrasted brain MRI ordered not because of the neuropathic symptoms, but because a rhythmic thumb twitching, which has got loose during my actual crisis, and they cataloged it as a clonic movement, which is different to the random, widespread muscle twitching I got everywhere else.

They found NOTHING, besides a slightly low Immunoglobulin A count which didn't startled any of my doctors. That have included: Internists, neurologists, pharmacologists, cardiologists. Their main bet is an autoimmune process but since nothing came out clear they didn't want to try IVG shots or strong doses of steroids, because they could cause me more damage than good since my symptoms are "mild", whatever that means for them.

Their actual main concern has been, in order of times mentioned: My high lipid counts(just detected last year), and my way off the charts anxiety, which I have much more under control now, or at least I believe so. Taking Rivotril for anxiety and pravastantine for lipids, which makes my symptoms worse(I believe that is a common side effect).

Recently I gained some weight, and became less active. Maybe because of the disease itself, that's exhausting in my case, maybe because of the medications, maybe because I have take shelter in food, Who knows?

I know that, unless I really can't do it, it's better to stay active, because of the cholesterol, because even in SFN, the lesat you use your muscles they do waste, not by the disease itself but because of the inactivity, but exercise somedays makes me fell really tired and aching, as some other I feel better after doing it.

I can sense a disease progression, but my last NCV showed actual recovery in nerve transmission, at least in the motor ones which this test measures.

Is there a chance to recover from motor issues and to get worst from sensory ones? I have more twitching everywhere, which is actually a motor symptom, more pain(I believe), cause I didn't even have pain when this struck me first, not even after my first EMG which showed the motor issues.

Finally, it's really hard for me to tell if is my illness, a medication's side effects(sometimes I feel like a zombie), anxiety, or something else. This junk behaves so strangely...

I know I'm not the only one, and believe me that, whatever I can do to contribute for others to get better like Aussie has done with the Alpha Lipoic Acid recommendation, amongst other stuff, I'll be the happiest guy on earth. I really hope we find some real answers, and effective treatments soon.

Sorry for the ranting, but today was one of those days... Where you have so many non-neuropathic issues to deal with, and you have your symptoms so high, that you just want to find a corner where to hide and rest for a little while.

All times are GMT -7. The time now is 11:11 AM.

© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!