Have come back from neurologist.
 

Finally the appointment that I have been waiting for. He saw me and said I have lost alot of weight,so that started things off on right foot.:D

He felt that my neuropathy is not progressive and the twitching and muscle symptoms were most likely kicked off by the shiatshu machine. He explained that my nerves are damaged/healing and I have a threshold. Once that threshold is crossed, I will appear to get exaserbation of symptoms but they are not new symptoms per say. He said I appear fit, and all reflexes are still there. Still have small fibre/autonomic.

My insomnia is my biggest concern, and he switched my BetaBlocker to see if another might help. I asked about the skin punch biopsy and apparently the reason they do not offer it is because the technician left and they did not replace her.Apparently someone needs to count the fibres??:confused:

He said they will offer it next year and it's a great idea I have it done,and no other hospital does it.

As I sat in the waiting room, the illest looking people were all around me. People who were very ill. There was this one man he was missing half his nose,and he had blood all over his face and one eye swollen shut,and massive amounts of crusted blood on his head.Then there was this young boy who was unable to lift his head and had what appeared to be a long surgery scar running down his neck. He had his toes cut off on both feet and he was wearing surgical stockings.Then there was 2 guys that looked like they had muscle wasting syndrome. As I sat there and felt the devestation in the room,my heart started to pound. I felt very shakey and unwell all of a sudden.Then it hit me. I am a really really sensitive person! I was a typical A personality before this illness hit. Now I have become A+++ as I am extremely sensitive to adrenaline... it just makes me sick. I also fright very easy.

I also then remembered,that when me dad had his stroke his right arm was affected. He hardly ever used that arm,and it's now heaps thinner than the other arm. I then realised that neither of my legs look like that,they appear thinner because I have really been loosing weight.

I asked how many other patients like me are there? He said he has many with autoimmune and post viral syndromes and it is becoming more common than they would like. I asked how many have died,and he said none.There isn't an icreased mortality,it's just a complete nuisance and then there are all sorts of symptoms that may need to be constantly managed.

I was glad to hear that he didn't feel the neuropathy was advancing. He did give me a script for a 24 holter monitor just to see what those shakes are at night when I am trying to go to sleep. I am so gald I went.

Thank you

Why do you need the skin biopsy if they agree what you have clnically? Whythe beta blockers? What do you take for sleep.

All sickness is worse at night, so needing somehing for slee is par for the course.

More rambling and fuller info on other post to you tonight.

Aussie,

I agree with LizaJane's question about the skin biopsy if the diagnosis has been made. It's too bad they didn't replace the technician because someone does physically count the nerve fibers after they have been stained for clarity. Are they considering the skin punch biopsy as a way to monitor the progression or improvement in your SFPN? I've read that this can be done and is a great advantage of the skin punch biopsy.

I do hope an alternate beta-blocker will help you sleep.

Alkymst

Hi
 

They said the skin punch biopsy is apparently not just for diagnosis. They would like to do it at different intervals to check for renervation & progress. I beleive Glen has explained to me that his subsequent biopsy showed marked renervation in small fibres,and he will eventually have another one to check further progress.

The beta blockers I take for a variety of reasons.Initally I took them because I was put on a high dose tryciclic which caused palpitations. So the neuro added the BB. Then I started having panic attacks and labile hypertenive episodes, so he said more... beta blocker. Then I evolved to have essential hypertension with panic attacks and headaches. So I have been stuck on the beta blockers.

Sleeeep:confused: I remember what it was like to sleep. Hopefully this new beta blocker will allow me to get some.

All in all...
 

your visit sounds very positive! I'm glad you seem to have gotten some answers. It really helps. Not knowing is the worst thing for me. I can deal with just about anything if I know what it is.

Also glad to hear that your condition is stable. That's one of my greatest fears....that this will get progressively worse. I can honestly see myself taking a machete to my feet at times *now*. What would I do if it's get worse? :confused:

On the skin biopsy, you can not determine what nerve fibers are affected just by symptoms. They stain those biopsies as well as count fibers.

I had a professor of neurology and pathology read mine. They also stained it for amyloid, counted Langerhan's cells, sudomotor innervation etc. I am not sure about what technician they are referring to. Medical technologists (at least a bachelor's degree level) may prepare the slides, but reading and interpretation is a pathology level function, usually an MD. Things may be a bit different in Australia, as your educational system may be more specific,as they are in Europe.

Clinical diagnosis is important, but to get to the molecular level of what is causing the symptoms of any neuropathy, it is good to know what kind of neuropathy you are dealing with, C fiber, thinly myelinated or myelinated. While all the small fiber or 'sensory' neuropathies have a lot of symptoms and suffering in common, not all people are affected with the autonomic component....and some people have motor involvement, and some people have sensory involvement with perfectly intact motor nerves, yet have movement disorders and movement disabilities.....the causes are endless.

I have found autonomic neuropathy is a lifestyle. You look good, so no one sees what you are dealing with, until you go on Dancing With the Stars. (Aussie-don't consider it...I can tell you it is off my list of to dos).

I think Marie Osmond needs a new doc, perhaps one who knows something about autonomic neuropathy.

Your doc does seem to know what you are dealing with. That is very good.

does Marie Osmond have PN?
 

I got the impression she fainted because of her meds.

She used the excuse of the CA fires, but I think she is still on antidepressants
for her issues, and SSRIs can cause fainting.

You know, for all the *rap that Marie has taken over all the years, I like her. I give her credit....she raised 8 kids. (So have I, but I only gave birth to 4...she popped all of them out.) If SSRI's helped me, I would take them....but alas, I would be like Marie, but not as pleasant. Thank heavens that dress was as tight as it was. I don't think she passed out from the wildfires. I would get a tilt table test if I were her....and just not dance in public, no matter how good I thought I looked.

Well, gotta go peel my hard boiled egg...I should put that on youtube. I would be an overnight sensation. (Hands are not mentioned much on the PN forums, but after the feet, come the hands.)

Don't want to hijack the thread....gotta go. Back to dysautonomia.

One more thing and I will get out of here...

This is just one example of what can be learned from skin biopsies...

http://www3.interscience.wiley.com/c...TRY=1&SRETRY=0

I hope that link works....if not, look up PGP staining Langerhans Cells on a search engine.

I don't want to go on and on regarding these biopsies, however, what is very important to understand is PN is not a disease in itself, it is a manifestation of some other disease process, which is taking place in the body. Some of these diseases are identified, such as diabetes, and others are terribly obscure, and many are just being discovered; and need people who have these 'idiopathic' conditions to provide the tissue necessary to find the cause, and work towards a cure.

Diabetic neuropathy, won't have the same cause as Chemo Neuropathy which won't be related to a Zaspopathy. Yes, just knowing you have PN may help you get some pain meds but most of us find the pain meds woefully inadequate to handle the pain....not to mention function. Function can vary hugely from one neuropathy to another. Some of us are going to end up with orphan diseases that get no funding for research....unless we get diagnosed and speak out, we will get no coverage, and no progress.

Usually these tissues are stored and can be dug out at a future time when some one bright connects the dots.

Hi Aussie, congrat's on the weight loss, i know that can be hard to do, i think a good diet/supplements and exercise can be helpful when your body is trying to repair itself.
Going by my healing process, you will know anyway when your nerve's are repairing without even having to have a skin biopsy which will only confirm what you will already be aware of anyway.

Brian :)