Neurology appointment coming up
 

Hi all, I have a follow up neurology appointment next week. All things sfn march on exceptionally fast. My experience of the nhs is often to march you out the door with more pain meds as quickly as possible. With that in mind I need to focus in on what might help the most. Hope you can advise me...

I have one other rheumatological autoimmune and since this time last year sfn pain started in legs. It is now full body, no place spared. Punch biopsy confirmed in Feb this year. Biopsy was not indicative of ganglionopathy at that stage. I have been tested for celiac, Fabry's disease, voltage gated sodium potassium channels and all clear. Negative for ANA and no indication of sjorgens at this stage. Forgot to add that I've had glucose levels tested, fasting glucose test and B12 and Vit D and B6 tested.
I have looked at the blood testing charts and there is no way I will get to have all these tested. Does anyone have advice on other key ones that may help in my case? Lumber puncture for example or amyloidosis?
I have noticed significant loss of muscle mass in my buttocks, legs and feet where it is worst. However 2 nerve conduction tests and an emg ( needle in leg muscle to test strength) have all come back OK. I'm being encouraged to believe it's lack of exercise. It is not simply that at all, my legs are half the size throughout.
My neuro says he wants to submit an application for ivig but feels it will get rejected and more evidence be required. I'm losing the will here as most people don't ever get the evidence. They don't use ivig for sfn as a matter of course in this country so a positive biopsy is certainly not enough. Nor is having clear autoimmune issues elsewhere.

I also have what I am convinced are autonomic symptoms, heart flutters, palpitations, dizziness, always have stomach issues, continued feeling of nervousness.
There are probably loads of tests that would be considered but my extensive experience has shown me that you often have to fight tooth and nail to get even one diagnostic test.

Once the nerves are so damaged is that the end of hope that muscle mass can be regained? I have strength still, they tire more easily but its the mass that has gone. It makes me feel really self conscious on top of everything else.

Strenght and girth talk
 

.Once the nerves are so damaged is that the end of hope that muscle mass can be regained? I have strength still, they tire more easily but its the mass that has gone. It makes me feel really self conscious on top of everything else.[/QUOTE]

During an acute phase of Amyotrophy, my legs,buttocks, especially quadraceps got small and I was walking on a walker. Now they are as a group stronger enough to allow free walking. I have also gained weight back that was lost but feel that the muscles are bigger than they were at my weakest. I feel that they(muscles)are smaller than originally but the strength is still not back to 100% either. I feel that my strenght may never come back to 100%. I suppose we fight to get what we can and make do with what we end up with. Good Luck, Ken in Texas.

During an acute phase of Amyotrophy, my legs,buttocks, especially quadraceps got small and I was walking on a walker. Now they are as a group stronger enough to allow free walking. I have also gained weight back that was lost but feel that the muscles are bigger than they were at my weakest. I feel that they(muscles)are smaller than originally but the strength is still not back to 100% either. I feel that my strenght may never come back to 100%. I suppose we fight to get what we can and make do with what we end up with. Good Luck, Ken in Texas.[/QUOTE]

Thanks Ken, can I ask whether you have sfn in the areas where you feel the amyotrophy hit most.
You have always advocated using an excercise bike daily - do you believe it was targeted excercise that helped regain some strength / mass in the affected areas?

The loss of muscle mass--
 

--needs to be investigated.

It is certainly possible to have small fiber neuropathy and lose muscle mass due to disuse of the muscles caused by pain or numbness symptoms. But small fiber neuropathy, which by definition involves sensory/autonomic nerves and not motor ones, will not by itself cause muscle wasting--that would seemingly involve the neuropathy having a larger, myelinated fiber component as well. When those nerves deteriorate, signals cannot get to the muscles and muscle mass loss is a common result. (Properly functioning motor nerves are constantly sending "maintenance" signals down the pathways to keep up a slight contraction, often known as "tone", even when the muscles are not consciously being contracted or extended. Damaged nerves result in loss of "tone" first, then loss of mass.)

There are certainly neuropathy syndromes that involve primarily small fibers,but many that involve a mix of large and small fibers. One may show a positive skin biopsy and still have a "mixed" fiber situation. Often, though, damage to larger nerves doesn't show on NCV/EMG until it has progressed considerably.

Though I don't know how easy it would be to get the various tests where you are, I would think a round of testing for antibodies specific to peripheral nerve would be in order--take a look at that section at:

www.lizajane.org

Targeted exercise
 

Thanks Ken, can I ask whether you have sfn in the areas where you feel the amyotrophy hit most.
You have always advocated using an excercise bike daily - do you believe it was targeted excercise that helped regain some strength / mass in the affected areas?[/QUOTE]

How can I say that exercise is important and yet useless in the same breath?I tried many forms of exercise but got no results. I feel that you have to keep calling on those muscles to hasten nerve regrowth. My turnaround was so slow it could have ONLY been regrowth. I have not been DX with sfn, just periferal neuropathy. I don't think everyone has just one thing going on, you might have motor involvement at the same time as dealing with sfn. I think that many Drs quit looking as soon as something is found that the patient and Dr both can hang their hat on and start some form of treatment plan.IMO you should use the atrophied muscles daily. Just to tolerance, this tells them they are still needed and will hasten all processes. As far as being self-conscious about your slenderness I thought a person could never be too rich or too skinny, haha. Maybe that is a California thing. Good Luck, Ken in Texas.

As far as being self-conscious about your slenderness I thought a person could never be too rich or too skinny, haha. Maybe that is a California thing. Good Luck, Ken in Texas.[/QUOTE]

Thanks Ken. Yes you certainly can be too skinny when your upper body is still the same normal size! Haha. You are right about the fact many consultants will hang everything on the first thing that might fit the bill.

Glenn, interesting the way you describe the atrophy as this is exactly how mine went. It started first with lack of tone to the skin of my legs and then seeming less tightly held together if that makes sense. This was before the sfn pain, the sfn pain came and then later came the obvious muscle atrophy. I've printed off the lizajane spreadsheets, I will never get all of these ordered via my neurologist. I am going to see how much it costs to have some of these done privately.

Thanks for the helpful replies.