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handjadensmith

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Greetings All:

While I am coming to terms with the twitching and slowly beginning to get it through my head that it is not from **S or *S per normal Brain MRI and neurological exam, the issues that bother me the most are the sensations of peripheral neuropathy, eg pain, numbness, tingling, and "feeling weak". I also have tremor and dimished dexterity and coordination. The sensory symptoms are in my forearms, hands, fingers, back of neck, and toes. The neuros tested me by checking grip and reflexes, inducing vibrations, toe directional tests, and observed my walking and squatting.

My Questions:

Do many BFS'ers suffer from peripheral neuropathy? For how long? Has it progressed?

When is this neuropathy truly benign, and how do you determine it? For instance, i have seen two neurologists recently (8 months) and exams are normal. I saw a cardiologist and he sees no evidence of blood circulation problems. Where else do you look before you try and just live with it?

I understand it can be from Autoimmune, thyroid, Glucose or Paraneoplastic origin, with the latter being the scariest and the rarest.

I intend to see an Endocrinoligist, but what else is practical?

Lastly, it is my understanding that sometimes this neuropathy is Ideopathic with no cause ever found. I just want to formulate a game plan, get all of the appropriate testing and try to move on.

Regards,
J
 
My neuro stated that I have "compression neuropathy" right above my right foot. I experience diminished feeling, tingling, and occasionally pain in this area. The doctor felt that it is due to habitually crossing my left leg over my right, just above my foot, while sleeping and while reclining. He didn't really think that it was too serious.

The feeling has been there (or not) for about a year. It's never really gotten any worse.
 
One possibilty is also MG. Thats what my neuro looked for at the beginning -> EMG is needed herefor.

Peripheral Neuropathy (B12, etc.)

CFIDS

Some type of spine problem (degeneration etc.)

What you mentioned of course.

If the twitching is not that often and you have it only when under a lot of stress then it is probably nothing at all = not even BFS. Maybe too much coffee or something really minor.

If it is in a certain spot only, then it can be CT in hands or pinched nerve if in feet etc.

I have read of people having mitochondrial problems having similar symptoms.

I guess although it wouldnt be common in MS that there is a minor minor minor possibilty it to be MS but you dont fall in this since your MRI is fine. The reason i think this could be the case is that many describe also numbness, tingling, buzzing, etc. and this are classical MS symptoms. TWitches arent however.

And there are definetly some other muscular conditions i have never heard of (even after 16 Months search) - that are almost never the case.

But most of the above mentioned have other more striking symptoms. I guess one wouldnt complain about twitches if he had lung cancer. Or maybe after a few months the "other" symptoms would be obvious. This is a guess however.
 
J-
Where are you getting peripheral neuropathy from? Is this a formal diagnosis you've been given, or have you just concluded this is what you have based on your symptoms?

I'm confused. You said your neuro exams were normal, which to me means you don't have periperhal neuropathy.

If what you are asking is how long these PN type symptoms go on, then that is an entirely different question.

You describe symptoms of pain, tremor, feeling weak, and dexterity issues, correct? These are all symptoms of bfs, and they often resolve over time once you get your anxiety under control.

True neuropathy would be picked up by a neuro on clinical exam and diagnostic testing.

Blessings,
Sue
 
Suzi,

Thanks for your reply. That actually addresses my most specific question. Does the normal exam actually rule out the diagnosis of "peripheral neuropathy"? I do not have that diagnosis, but I have the symptoms of it. Right now my left arm and right foot are tingling and feel quite numb. My circulation gets cut off quite easily, i wake up numb, etc.

Sorry I don't "get" some of these things right away.

Suzi wrote: You describe symptoms of pain, tremor, feeling weak, and dexterity issues, correct? These are all symptoms of bfs, and they often resolve over time once you get your anxiety under control.

That's me to a tee! :)

So yes, does normal neuro exam rule out peripheral neuropathy or do I need EMG?
and if normal exam rules it out, yes I am wondering more about the symptoms, experiences, correlation to BFS, etc.

It just seems like an exhausting process to try and rule everything out.

Suzi, you're the best! :)
 
Alex,

I thank you for the reply. I was thinking of MG: but from this site:



the clinical presentation is as follows:
CLINICAL PRESENTATION
Patients with myasthenia gravis come to the physician complaining of specific muscle weakness and not of generalized fatigue. Ocular motor disturbances, ptosis or diplopia, are the initial symptom of myasthenia gravis in two-thirds of patients; almost all had both symptoms within 2 years. Oropharyngeal muscle weakness, difficulty chewing, swallowing, or talking, is the initial symptom in one-sixth of patients, and limb weakness in only 10%. Initial weakness is rarely limited to single muscle groups such as neck or finger extensors or hip flexors. The severity of weakness fluctuates during the day, usually being least severe in the morning and worse as the day progresses, especially after prolonged use of affected muscles.

I don't have any oropharyngeal symptoms (thankfully)
I have severe generalized fatigue.
My perceived weakness is mostly in my limbs.
Morning is no better for me.

I am interested in CFIDS, but it seems extremely difficult to diagnose.

I have not been diagnosed with Peripheral Neuropathy, i have the symptoms of it. Thanks to Suzi for helping me clarify. It sure does feel peripherally Neuropathic to me!

J
 
You could try the following.

Take a needle and apply it if the leg is affected for example along the outer part of the leg. Starting if you are looking at your legs just beneath the knee from the outside part needling yourself (gently) untill you reach the ancle. From there go further (right foot for example) on untill you reach the tiny toe.

Thats what my neuro does every time i am there. Then do it with your other leg. Look for differences. Do you feel the needle or dont you. I think that is one of the crucial tests a neuro does when he suspects pn.
 

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