[mellytek]

Hi there

i have had tingling hands feet face for a long time now (2 years)and it now feels like i am suffereing muscle loss in the wrists and ankles area , mostly my right side

i have had all tests and all are negative including nerve conduction test

my dr thinks im not loosing any muscle and said this would have shown up on the nerve conduction test also my neurologist said it could be a case of small fiber neuropathy or anxiety he was unable to tell me as couldnt test for it here


my question will muscle loss from small fiber neuropathy show up on the nerve conduction test as im a little unsure of my local dr's knowledge and its something i totaly forgot to bring up with the neurologist as it wasnt bothersome at the time .....


cheers and look forward to a reply as wondering if my mind is doing all the tricks

[Ragtop262]

Hi Mellytek, I went through a phase where I was experiencing weakness and swore that I was losing muscle mass - and much like you, all the tests were negative.
One of the things I did was to use a tape measure to take careful measurements of all major areas, and write them down as a baseline. That way I will know whether or not my muscles are actually shrinking or not. Fortunately, its been over a year, and there hasn't been any measurable muscle loss. The phase where I felt weakness also passed.
Honestly, I still don't know for sure whether I actually experienced any muscle loss in that early phase or not. But I feel a lot better that I have some actual measurements that I can check against. And, as much as I hate to admit it - in my case, I think it was likely that the whole muscle loss fear was just my mind playing tricks on me.

[SylvieM]

Hi M.,

Did "all the tests" include skin punch biopsies for SFN? Is this the one you suggest your doctor can't do? It is the only definitive test for SNF. By "nerve conduction studies" do you mean an EMG...for that only tests large fibers? SFN can cause asymmetrical muscle atrophy.

My EMG was negative. I had to enlist my PCP to get my neurologist to do the skin biopsies. These were positive....yet my neurologist was so intent on sticking to his initial hypothesis of "anxiety, " he noted the test results were "artifacts." I went to another neurologist, (out-of-pocket) --a dysautonomia specialist, to get my diagnosis of SFN confirmed. I'm still looking for an empathetic, patient-oriented neurologist who is covered.

Based on what you have written, it appears you too might have to look elsewhere.

Such a drag....I'm calling offices to talk with someone knowledgeable before I make an appointment....

I wish you the best.

S

[mellytek]

Hey Ragtop , yeah thats a good idea about measuring, but im prety skinny there now so it wont do much use for me at the moment , wish i had thought of that months ago though, I'm actually wondering if all this tingling buisness can burn off fat in these areas ? and these being the skinniest areas I'm noticing it a bit more , can tingling burn off fat ? something i have been wondering, but yeah at the moment trying to work out if its all in the head or its SFN

[mellytek]

Hi Sylive thanks for the reply

no i wasnt offered this test , the neurologist said to me you cant diagnose SFN , im in ireland so maybe its not possible to do this here , i dont know ??

guessing emg is the same thing ? so yes its looking like ill have to look into going elswhere ? its a big hmmmm here now

anyways thanks for your comment

[Cliffman]

Originally Posted by mellytek

Hi Sylive thanks for the reply

no i wasnt offered this test , the neurologist said to me you cant diagnose SFN , im in ireland so maybe its not possible to do this here , i dont know ??

guessing emg is the same thing ? so yes its looking like ill have to look into going elswhere ? its a big hmmmm here now

anyways thanks for your comment

I hope you can find a new doctor because SFN can be diagnosed...I find it amazing that your Neurologist said such a thing.

Cliffman

[SylvieM]

Originally Posted by mellytek

Hi Sylive thanks for the reply

no i wasnt offered this test , the neurologist said to me you cant diagnose SFN , im in ireland so maybe its not possible to do this here , i dont know ??

guessing emg is the same thing ? so yes its looking like ill have to look into going elswhere ? its a big hmmmm here now

anyways thanks for your comment

Dear M,

I think you are going to gave to get on line and do some research to find a neurologist and or center who will test. I can't imagine one cannot get this testing in Ireland!

EMG testing is for muscles. (Large fibers)..it is cumbersome and somewhat painful. My insurance mandated I get this first. I knew it would l'd be negative, for I have no problems now with muscle strength and gait.

I knew my I issues were around small fibers....for I have both autonomic (issues with heart rate, blood pressure, sweating, digestion, etc) as well as sensory (tingling, burning pain). I was right, unfortunately.

Yet it is very important to be diagnosed.....as you can see on this forum, there are many causes for small fiber neuropathy....and treatment s may vary depending on them. Mine has either no known cause (idiopathic) or may be the result of medication....not sure.

So try googling "peripheral neuropathy" and "testing." You may wish to begin with major medical centers. Call them and ask if you can speak to someone about their services. Note of caution...centers might test but not treat! But testing is a start!


Ill take a look for you too later!

Sylvie

[Ragtop262]

Originally Posted by mellytek

Hey Ragtop , yeah thats a good idea about measuring, but im prety skinny there now so it wont do much use for me at the moment , wish i had thought of that months ago though, I'm actually wondering if all this tingling buisness can burn off fat in these areas ? and these being the skinniest areas I'm noticing it a bit more , can tingling burn off fat ? something i have been wondering, but yeah at the moment trying to work out if its all in the head or its SFN

Well, I've had enough history with anxiety issues to tell you that anxiety can mimic virtually any symptom you can imagine. However, in most cases anxiety will wax and wane - and the symptoms along with it. This is just my opinion, but I think that constant symptoms over a period of years is unlikely to be "just" caused by anxiety.

At the same time, I also believe that stress and anxiety can play a large role for many people with SFN (primarily the ideopathic ones). So, along with all the other things you need to do to find out what the cause is and how to treat it - please work on the stress/anxiety issues in your life - as difficult as it may be. It can't hurt - and you may find it very beneficial.

[mellytek]

Thanks for the replys guys , its really apreciated, its looking like i need to deep a lot deeper to get to the bottom of this , if you dont mind im going to write about the symtoms etc etc

so :

tingling hands feet lips , also tingling brain and a dull headache , very cental this
moving around being busy makes it worse , sometimes after a jog it can be pretty bad , sitting still does the same , i find slow movement almost like doing tai chi makes me feel better
the heat can agrivate it , hot bath/shower / doing the washing up , cold water makes it feal better and even just the cold weather helps , summer is a pain luckerly its not to hot in ireland

slight muscle loss to my right side it feals (hard to see but it feals like it) but i dont feal any aches or pains , i still feal very fit , im able to do 30 push ups in one go , sometimes in the evening though i get very tired , might be due to stress this ?

just before i got the tingling i was about 14.5 stone in weight, i drastically changed to about 13 stone over weeks , 2 years later im about 12 stone now
it must have been about 15 years ago i was at this weight and i eat like a pig still beer has been my biggest issue so im thinking it could have come from this ? the night life is part of my work so it has been really hard to not drink over the weekends , the joys of a dj, one other thing i have noticed is i have a really small amount of hairloss to my right side , its really small this and my doctor being bald i didnt want to bring it up , as said before though i have had numurous tests and all is clear, just would like to get that skin biopsy test

anyways that all i can think of at the moment , it would be interesting to hear if this relates to some of you ?

cheers again and excuse the ol grammar