Hello out there,

I was diagnosed 4 years ago for peripheral neuropathy. My doc told me there was nothing you could do about it as it is simply idiopathic. However, my health deteriorated rapidly the last 8 months and I prodded my doc into a referal to find a cause. I have yet to review things with the neurologist but his assistant told me I have been diagnosed with small fiber neuropathy, hashimotos, porphyria and they are trying to get me into a mitochondrial clinic in D.C.

I am 57 but until 8 months ago I was going 5 sets of tennis guys in their 20's and winning. No stomach, gray hair, strong legs and big arms. I felt crappy but I could fool anybody. See me now and you might ask if I need an ambulance.

I know I should just wait until my neurologist returns but symptoms are accelerating FAST and my thinking is jumbled. For the first time in my life I'm scared and I don't like being out of control. Over reacting with my children is probably the worst thing actually - forget the pain - that really hurts.

Can anyone shed some light for me. I really want to have a sit down with my family but not until I know the game plan.

Thank you for your time, jeff

Welcome to NeuroTalk:

You really need a specialist in Porphyria. This can be genetic or acquired. And there are several types.

Same with the mito issues. Some common drugs damage the mitochondria... and give symptoms.

What you need to do is a search on the net of all the drugs you have had in the past and now also take. Doctors are often lax and ignore this subject because of liability constraints.
And some are in major DENIAL that drugs could even be triggers for serious disease. They are so deluded at times about this.

You might have to go "over" them to find you answers.

You can come to our PN forum for further postings. We have more data on our subforum and main forum that I have collected over the years than most other sites.

http://neurotalk.psychcentral.com/forum20.html

http://neurotalk.psychcentral.com/forum119.html

Thank you. I am just starting to look this stuff up. I've found that investigating your own conditions on the internet is quite depressing. However, your point about about the disease manifesting from drug side effects is rather uplifting. How would one go 'over' them to find answers ?

Here are some search suggestions:

causes of acquired porphyria

Drugs that may cause porphyria

Causes of porphyria

Types of porphyria

Things like that. We have a member here who is on MS forum
Mariel. She may be able to help you.

Here is a new thread of hers to go on:
http://neurotalk.psychcentral.com/thread200525.html

Since you are still new you can't use our private message system yet, so just ask her on the forums for now. Introduce yourself, etc.

Porphyria is a known trigger for neuropathy.

Isn't MrsD awesome ?

There are many others on here that will be able to give information also. We are a very caring and supportive group of people.

I have small fiber neuropathy that was confirmed with a skin biopsy. The cause of mine if diabetes/chemo treatments.

Welcome

Debi from Georgia

Thank you Debi, I believe mine was also via a skin biopsy, as the assistant informed me of this a few weeks after taking three plugs from my leg. I just viewed some info on mitochondrial disease and it looks like that can also trigger it. The horrible pain some experience with small fiber neuropathy seems to have been kind to me. I have had many episodes of severe pain, that are very difficult to describe, but they are so few, short and far between that I'd call it minor in nature. I hope you are as lucky as I in that regard.

Best regards,

Jeff

Just wanted to check in and see how you're doing ?

Nope...not as lucky as you in the pain dept We're (me and the dr's) thinking that the chemo (taxol/carbo combo) actually killed the A and C fibers in my feet....they are zero....nada....dead. You'd think they would just be quiet and leave me alone right ?

Working with my neuro on diff meds to try and find something that works. So far I think it's 'tapped' down the pain but I'm still taking 1/2 a vicodin every 3 or 4 hours and 1/2 a Xanax when it's really bad and puts me in the bed. My newest symptom is stinging between my toes....nice.

Let us know how you're doing.

Debi from Georgia

Hi Debi,
Thanks for getting back with me. I'm not doing very well and waiting for my 2/24 appointment with my neurologist. I've been having what I call 'brain zaps' recently and have made an appointment with the surgeon who removed a brain tumor in 2010. My GP seems useless. I made a big mistake 10 months ago telling him I visited a psychologist. Since then everything wrong with me is psychosomatic, no matter how much evidence proves him wrong, and it drives me nuts that I have to somehow prove my veracity. It seems he's developed an hypothesis that no fact shall alter. One doctor tells me I'm probably dying but we're going to wait a few weeks to fill you in and another tells me to see a shrink. This really sucks especially in that my father, who is dying of cancer, recently moved in with us. How this must look to the kids. How motivational.

Thanks for letting me get that out! I have recently had some painful moments in my feet and hope they stay away. Probably gods way of saying ' hey cheer up, it could be worse'.
How often do you get the pain sensations ? Did it start gradually and does the pain medication help ?

Best regards,

Jeff

It seems the people closest to us get the worst part of us as we go through these medical issues.

I'm very sorry about your father and it is so good of you to take him in. How old are your children ? I have 2 adult children and 6 grandchildren ranging in age from 8 to almost 17 and it really upsets me when I hurt their feelings because I'm not feeling well or am stressed.

I have symptoms going on in my feet 24/7....sometimes painful and sometimes not too bad. I think the combination of meds that I'm on now do help but I'm still unable to clean my house, shop for groceries or cook. Those 3 things are my goals. When this started 9 months ago it came on suddenly a month after my chemo ended and never let up. I could not do this without the pain meds. I take vicodin every 3 to 4 hours and Xanax as needed when the pain is really bad. My neuro does not encourage pain meds but my PCP is the one prescribing them and my neuro hasn't told me not to take them. Wouldn't do him any good if he did, I would take them anyway.

I know it will be hard but have you thought about changing doctors ?

Please let me know what your neuro says.

Debi from Georgia

Just wanted to check in and see what the dr said on the 24th.....you doing ok ?

Debi from Georgia