NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - New here (https://www.neurotalk.org/peripheral-neuropathy/48178-new-here.html)

I really can't read the internet

Tonight I googled "small-fiber polyneuropathy" and had myself in near hysterics. I still haven't had the biopsy or the autonomic testing, so many questions remain. And reading about this online gave me visions of ... well, really bad visions. :icon_cry:

I did have some bloodwork done. The lab worker didn't have anything for "autoimmune," but she did do B12 and folate, etc. Both are in normal levels. The only thing low was Vitamin D so I started taking those supplements again.

Tomorrow is the biopsy! The biggie I think will be the auntomic testing.

Anyway, thanks for the stickies on how neuropathies do improve. It helped me tonight

Hi.

Do you remember what your B-12 levels were? What the actual number was?

What THE EXPERTS consider normal IS NOT NORMAL.

My number was 2000 at my last blood test. Don't be shocked. It's how I fight my neuropathy and it fights it just fine.

So if you can tell us your B-12 number, somebody will explain it to you.

Melody

It is 720.

Thanks!
Kris

Quote:

Originally Posted by KrisC (Post 309619)

:hug: It's real easy to scare oneself when reading online. Post here often when you're feeling that fear. It really does help to know there are people here, real live people, that know exactly where you're at and what you're going through.

And even better, there's real help here too. Lottsa of experience from many kind and compassionate people. :)

We have all had such pain nights we would yell are you there,aand some
dear one would whisper i'm here,what's wrong. pain oh the pain,or I can't sleep. So we been there done that,but mybe not we learn from each other. But most of all ,you can go crazy scareing yourself on the internet. I don't have to tell you that but I will tell you these are wonderful
bright people here at NeuroTalk. Summer can be of and on.I'm just about done for treatment of cancer.Good luck with your tests. hugs you all Sue

Thanks Kris.

Okay People.

Any comments on a B-12 level of 720? (Like I said in my previous post, my number is 2000)

Thanks much

Melody

Over 600 isn't all that bad. I'd say that 720 is a 'low normal' reading.
Couldn't hurt to supplement, though.
I'd take sublingual methylcobalamin 2000mcg/daily

Quote:

Originally Posted by KrisC (Post 304124)

Hello,
My name is Kris. I am a 38 year old mom of three kids, ages 8, 6 and 3. Until last fall, I was active and healthy, exercising every morning, chasing my kids, cleaning my house, and on and on.

Then last fall my inner ankle started hurting. Burning and aching. I spent six months going to orthopedic doctors and having imaging done. In april, my other ankle started aching. In the last few weeks it also progressed to burning, and I'm having some burning off and on in my arm. Some days my ankles feel decent and somedays they burn. Today they're burning.
'
I spent the last week thinking I had RSD/CRPS. I was just seen by a neurologist at MGH yesterday who said she doesn't think it's RSD. She said it's small fiber predominant peripheral polyneuropathy. She's ordered a skin biopsy and autonomic testing, which will happen in the next two weeks. I had started neurontin and she increased the dose. It doesn't seem to help yet.

I am so sad. I thought I would have surgery and be fixed and now I realize this is it: pain. The neuro and my husband have ordered me to call my primary care for an antidepressant. I just did but I feel like nothing will help. And I never had to take drugs before. Now I will for the rest of my life.

My neuro told me to take only my multivitamin and that's it. Usually I take flax and omega three and calcium and vitamin D. She said just the multi. Everything I read to take is vitamins and I wish I could try some but for now she said no. I want to try everything, even the rebuilder. I want to heal!

Anyway, I just wanted to introduce myself. Sorry I am so doom and gloom. I am having a hard time adjusting, and am still concerned about RSD.

Best,
Kris

Hello Kris,

I have had my symstoms for over 10 years, I have no feeling at all in my feet which makes me lose my balance once in awhile, the numbness is up my leg to mid calf and my fingers are getting numb also. I think what I would like to say is that not all is as bad as you may think right now. I know how awful it is to have someone tell you there is no cure and the pain will get worse. But I have found my own way to deal with this disease. Last year I went to the Cleveland Clinic for a 2 opinion. I have stopped taking all of the medications and I am starting over again. Its been tough and some days the pain is more than I can stand, but I have found that working out really helps me. I'm not able to walk like I use to and I can't do aerobic any more, but I have found swimming and I have to tell you its like a wonder drug for me. I feel strong and I'm able to swim laps, I started doing 1 now I can do 20. I guess what I would like to say is don't give up, and only you know how you feel all the doctors in the world really don't know the pain we feel. I hope you find what ever will work best for you, but can always come online and find someone who will be here to give you some great advice and just listen.

Have a great day,
Kathy

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Thanks to everyone again for your kind replies. I just have a couple of questions.

Liza Jane: you mentioned you think this is an inflammatory PN. What does that mean? How do I get tested for that -- is that part of the autonomic testing or is that bloodwork? My lupus score on my blood work was just above normal so I'm supposed to schedule with a rheumatologist too -- told that will take forever to get an appt.

Mrs. D: Are you a doctor or clinician of some kind? I'm asking purely out of curiosity.

to everyone: Do any of you have color changes to your skin? The top of one of my feet turns red and purply sometimes, and I have bright red patches on the palms of my hands (no pain or numbness there.)

I just bought some of the capcaisen (sp?) topical yesterday and will see how that goes. Autonomic testing is Thursday. PRAYING for a normal result on that. My stool has been lose for a few months (I know, TMI) so I'm praying that's not related.

Thanks again everyone,

:hug:
Kris

I also wanted to mention that I've started taking my regular vitamins again. My vitamin D came back "mild deficiency" so I'm taking that and calcium again.

So I'm taking my multi, flax, omega 3, calcium and vitamin D, vitamine C/E, and will start evening primrose again today too. I reread the doctor notes from my neuro visit and the vitamin thing wasn't on there, so I'll just say I didn't hear her.