[pinkynose]

I'm having some possible AHA moments this morning but want to make sure I am not over reacting.

I am not sure if some of my symptoms are autonomic so I am asking for your input if I should push for a sweat test and if so which one?

For many years before I had any burning or what I now know as SFN sensations I had boasted that I hardly sweat. I could come out of a spinning class surrounded by people who were soaked in their own perspiration and I would have a small damp spot on my back. It's not that I was incapable of sweating it's just that the circumstances would need to be extreme.

Lately my blood pressure has been getting higher. From 90/60 or 100/70 for years to recently 129/78. The lowest it seems to go is 117/70 or 80. To all my new doctors this is not a concern, but to me it needs to be compared to what it was.

I have not gotten a dx for SFN not even idiopathic, not for lack of trying. Do I pursue this or am I being a over reactive?

[Patrick Winter]

Originally Posted by pinkynose

I'm having some possible AHA moments this morning but want to make sure I am not over reacting.

I am not sure if some of my symptoms are autonomic so I am asking for your input if I should push for a sweat test and if so which one?

For many years before I had any burning or what I now know as SFN sensations I had boasted that I hardly sweat. I could come out of a spinning class surrounded by people who were soaked in their own perspiration and I would have a small damp spot on my back. It's not that I was incapable of sweating it's just that the circumstances would need to be extreme.

Lately my blood pressure has been getting higher. From 90/60 or 100/70 for years to recently 129/78. The lowest it seems to go is 117/70 or 80. To all my new doctors this is not a concern, but to me it needs to be compared to what it was.

I have not gotten a dx for SFN not even idiopathic, not for lack of trying. Do I pursue this or am I being a over reactive?

You're having burning in your extremities? Pretty sure a good neuro will do a skin biopsy or sweat test if you have that symptom. Are you saying your neuro wont do it?

[pinkynose]

Originally Posted by Patrick Winter

You're having burning in your extremities? Pretty sure a good neuro will do a skin biopsy or sweat test if you have that symptom. Are you saying your neuro wont do it?

Chronic burning in feet, legs and sometimes arms. My nerve conduction test didn't have definitive results and yes I am saying my ex- neurologist won't order anything further. I fired him.

Based on my symptoms I am pretty certain I have sensory SFN. What I wondering about now is if I also have autonomic SFN.

[Patrick Winter]

Originally Posted by pinkynose

Chronic burning in feet, legs and sometimes arms. My nerve conduction test didn't have definitive results and yes I am saying my ex- neurologist won't order anything further. I fired him.

Based on my symptoms I am pretty certain I have sensory SFN. What I wondering about now is if I also have autonomic SFN.

My nerve conduction test was clear as well. I passed most of the normal tests. For SFN they have to dig deeper...literally...with a punch biopsy. Not the worst experience really. Just find a new neurologist and demand a skin punch biopsy. It took me 4 neuros to find one who did the test for me. I ended up being right in the end.

I have found the supplement l-citrulline helps with the burning in the extremities.

[Healthgirl]

Originally Posted by pinkynose

I'm having some possible AHA moments this morning but want to make sure I am not over reacting.

I am not sure if some of my symptoms are autonomic so I am asking for your input if I should push for a sweat test and if so which one?

For many years before I had any burning or what I now know as SFN sensations I had boasted that I hardly sweat. I could come out of a spinning class surrounded by people who were soaked in their own perspiration and I would have a small damp spot on my back. It's not that I was incapable of sweating it's just that the circumstances would need to be extreme.

Lately my blood pressure has been getting higher. From 90/60 or 100/70 for years to recently 129/78. The lowest it seems to go is 117/70 or 80. To all my new doctors this is not a concern, but to me it needs to be compared to what it was.

I have not gotten a dx for SFN not even idiopathic, not for lack of trying. Do I pursue this or am I being a over reactive?

Funny about the sweating part. I've never been a heavy sweater either. I don't personally know what the point of the sweat test is really. I didn't ask for it. I have some pretty nasty autonomic problems that are worse some days than others. I was diagnosed with SFN by skin biopsy and tilt table. There is absolutely nothing they can do unless they find a cause anyway so it is no better than the fibromyalgia diagnosis that was made in the first place. The only reason for a confirmation of nerve damage is good to have is know that one isn't crazy, especially when they look so well and can be so debilitated.
Sometimes I wish I didn't know that there was actual damage because it just sounds terrible.

[Ragtop262]

Originally Posted by Healthgirl

The only reason for a confirmation of nerve damage is good to have is know that one isn't crazy, especially when they look so well and can be so debilitated.

There is another good reason to confirm the damage and get a definitive diagnosis: In order to pursue a disability claim if your condition prevents you from working.

This is a big concern of mine. I have a fairly physical job, and for a time, I was having a great deal of difficulty doing all the required walking, climbing, etc. My company has a great long term disability policy - but how could I make a claim without a diagnosis??

Fortunately, I'm currently doing somewhat better - but we all know that the beast could rear its ugly head again at any time. I don't like thinking about these things - but with bills to pay and two kids in college.............

[pinkynose]

Originally Posted by Healthgirl

Funny about the sweating part. I've never been a heavy sweater either. I don't personally know what the point of the sweat test is really. I didn't ask for it. I have some pretty nasty autonomic problems that are worse some days than others. I was diagnosed with SFN by skin biopsy and tilt table. There is absolutely nothing they can do unless they find a cause anyway so it is no better than the fibromyalgia diagnosis that was made in the first place. The only reason for a confirmation of nerve damage is good to have is know that one isn't crazy, especially when they look so well and can be so debilitated.
Sometimes I wish I didn't know that there was actual damage because it just sounds terrible.

I am totally with you. Diagnosis does not mean they can cure it. I don't need confirmation to know I am not crazy so that's not a motivator anymore.

Truth be told, the main reason I worry about autonomic is I have a tricuspid heart valve leak which is significant enough to warrant annual monitoring. My yearly appointment is the end of January. My SFN symptoms didn't show up until the end of February last year so my cardiologist is not aware of this. I had my records sent to her by the neurologist recently but you know how that goes. If it weren't for that i don't know that I'd push for the sweat test.

I continue to try to push for a cause even though my ex-neurologist rattled off depressing statistics about the odds against help. In the meantime I do my own "not ready for prime time science experiments" to be able to figure out triggers.

[pinkynose]

Originally Posted by Ragtop262

There is another good reason to confirm the damage and get a definitive diagnosis: In order to pursue a disability claim if your condition prevents you from working.

This is a big concern of mine. I have a fairly physical job, and for a time, I was having a great deal of difficulty doing all the required walking, climbing, etc. My company has a great long term disability policy - but how could I make a claim without a diagnosis??

Fortunately, I'm currently doing somewhat better - but we all know that the beast could rear its ugly head again at any time. I don't like thinking about these things - but with bills to pay and two kids in college.............

You are right Ragtop! So glad you are doing better. I am blessed to be newly retired with my son grown.

[Patrick Winter]

Originally Posted by pinkynose

my ex-neurologist rattled off depressing statistics about the odds against help. In the meantime I do my own "not ready for prime time science experiments" to be able to figure out triggers.

Isn't that wonderful of them? "It's not curable but we can give you drugs that'll allow you a "quality of life". You'll be dizzy, have blurred vision, forget your own name, unable to drive and unable to get out of bed but otherwise you'll do just fine." Didn't he just say "quality of life"?