Dazed & Confused
 

Hi, my name is April. 8 days after my 40th b-day I got the results of my skin biopsy. It was positive for Small Fiber Neuropathy. I was told over the phone...so I haven't seen my neurologist yet since the diagnosis.
I'm glad to FINALLY have a diagnosis after many, many years & tests. However, I wasn't expecting it to be this! Until now, I've never heard of this disease.
Since 2007 I've survived a really bad case of Whooping Cough (which landed me in ICU), a Pulmonary Embolism (6 weeks after abdominal surgery) & severe hemorrhaging (5 weeks after a complete hysterectomy). Doctors say I should be dead! I've had several blood transfusions as well as iron infusions.
While doing a CT Scan to check on the damage from the pulmonary embolism, the doctors discovered 3 black spots on my right lung that were growing.(The pulmonary embolism was in my left lung). {and NO, I've never been a smoker}. I had a PET Scan done & it didn't show cancer at that time. I have to have CT's regularly to keep a check on the spots.
Anyway, what I'm getting at is...I know pain & I deal with it fairly well. But I'm scared about this new diagnosis. I don't know what to expect. I don't know if it's been caught in time to help me. I already have symptoms of it affecting my bladder & colon. What does this mean?
My appt. with my neurologist is 9/29 at Vanderbilt Hospital. Until then, I've just been searching the net. I'm really scared from what I've read. Can someone/anyone help me understand what my future holds?:grouphug:

Hello April!
 

Welcome to NT!
I'm sorry to hear of your recent diagnosis and the fear of the unknown that this brings.
You've found a wonderful place full of caring people who know and understand what you are going through.

Here is the direct link to the Peripheral Neuropathy forum:
http://neurotalk.psychcentral.com/fo...aysprune=&f=20

It is very active and full of very knowledged folks who can help you as you wade through your concerns and questions.

I hope you stick around.
Let us know how it goes with your upcoming doctor visit.
Try not to let fear get the best of you.
You've done a good thing by reaching out for support and care.
The medical answers will come in time.....try not to let your imagination take you to dark places.......(I've been there done that :( ) It only makes things worse. You need friends right now, and also to concentrate on keeping yourself healthy.

Caring
Rae
:hug:

Great to have you here!!
 

Thanks!
 

Thanks. I appreciate your support!:)

Thanks!
 

I appreciate your support & I will keep you updated. :)

Hi. Welcome to our little world here at Neurotalk.

You have been through so much, haven't you?

I'd just like to tell you that we care about each other here at Neurotalk and someone will come along and give you whatever information you are seeking.

Until that happens, visit some of our forums and ask questions.

:hug:Melody

hi april and welcome to NT,

wow, you've been thru so much. it's a lot to handle.
i'm not familiar with small fiber neuropathy but it looks like you deal with pain.
i do too (from MS) so i can empathize with you.

in '08 i was dx'd with breast CA. thankfully it was caught early and i've been fine since them. however, i know what it's like to get very disturbing news, then to schedule test after test and wait for the results.

what helped me is to try to take only 1 day at a time, 1 test at a time etc.
worrying about the future can make you crazy with fear and in the end it doesn't help. i know that's a tall order.

write down your Q's and make sure you get answers when you go to the dr.
bring a friend or family member with you if possible for a 2nd set of ears.
it sounds like as of right now you're ok and in a holding pattern.

please let us know how you are.

Quick Update
 

My Neurologist mentioned the word Amyloidosis as a possible cause of my neuropathy, which will require more biopsies to confirm. I've decided to seek out a specialist in this area. I'm so scared & confused. I like the Neuro. I'm seeing now but she doesn't seem to get in any hurry to get me answers. And she doesn't seem to know a whole lot about the disease. Everything I've read says the sooner you confirm a diagnosis & begin treatment the better. I don't want to find out later that if my doctor had been more agressive things would have turned out differently.
Maybe I'm over-reacting but I say better SAFE than SORRY!:confused:

How about a late hello!

Glad you came to NT. IT's a great place to find support and answers.

Ask and ask again until you do understand. When it's complicated it seems to take a lot longer to understand your condition. I know fear is a bad thing to deal with. The unknown is scary. WE do understand.

I hope you find some answers and get a treatment plan going soon.