NeuroTalk Support Groups - View Single Post - Burning got too much

mrsD · 10-30-2009, 05:28 AM

Quote:

Originally Posted by Kiwiboy

I didn't have a Vit D test Is that helpful? what will that indicate? In the 4 days before this all started, I had been taking 3mls of cod liver oil in some juice. As I said, only about 4 days worth, so probably inconsequential?

I've stopped taking all supplements since this started (I was taking a multi/adrenal support cap). and I stopped my Pentasa because of my slightly impaired kidney function. The only thing I have done is I took Acyclovir for a couple of days to see if I had any change in symptoms. This has not changed anything and my burning sensations persist. They come and go in different parts of my body, in a pretty symmetrical fashion. It seems a shingles outbreak with or without a rash is pretty focal where as my experience is that this is moving around. Face, back of legs, forearms.I've had a look around, and none of the symptoms of 'Shingles without a rash' appear to be like mine.

I starting to think I am stuck with this. As the *only* thing I can find that fits what I am going through specifically is the Ganglionopathy scenario. It certainly seems to be the worst possible option, but nothing else is coming close to fitting the symptoms. I'm not holding out much hope for my Neuro visit. I guess he'll just be saying the same thing, that it's hard to diagnose, lets just start some pain management etc. What a terrible affliction this is

I am confused and finding it difficult to respond to your posts.
1) You told us about your Pentasa and recreational drug use but not about other things you are taking, including supplements.
If you just started some supplements, after coming here I'd like to know what they are. And what you were taking before. For example, what is in the Adrenal product?

2) Two days is not long enough for an antiviral to work. Starting and stopping this way is self medicating, and not useful.
Acyclovir also works against herpes Simplex. And what dose are you using?

Glenn has a wonderful link in the stickies here. It explains all the various testing needed to diagnose PNs.
http://www.questdiagnostics.com/hcp/...eralNeurop.htm
This protocol was developed by Dr. Latov, who is considered an expert here in US.
You can use it to help your Neuro do your testing.

I would keep a journal, as to what you are eating/consuming daily and doing, and the symptoms you have that day.
After a while you may see a pattern emerge that can help you.
For example, I found potatoes were a culprit in my foot burning that would come and go.
Some people have gluten intolerance, or intolerance of another food group.
Expect to become a detective, and become an active participant in your recovery.