[dmouse]

I'm still in shock over this and found this forum searching for answers. Please excuse my rambling as I wasn't prepared enough for this.

Just got the call this evening from the neuro's office. My tests were back in December. I was told I have small fiber neuropathy, autoimmune, proablably scleroderma. Well, I do have morphea scleroderma, positive ANA with a titier of 1.7. This has been going on for several years, and several doctors to find it. I lost my job in Feb 08, as well as health insurance. Husbands income a little too high for state aid, but did find Cleveland Clinic has programs. Went to my primary in Sept. and he sent me to the neurologist. All types of labs, and EMG, QSART, Tilt Table and punch biopsies.

He wants me to start IV gamma globulin - once a month. No insurance and I don't know yet what I qualify for. It could take another few months to find out and I've read it's very expensive. Don't know what to do here.

The pain/burning in my feet started around 2002ish... my rhuem at the time told me I had a systemic variant of scleroderma and all tests and treatments were geard towards that for roughly 4 years. Got undiagnosed by a sclero specialist at Cleveland Clinic 2005. Dummy me stayed with her for a few more years until she was too busy to see my when I had pnuemonia.

My neuropathy has progressed over the last 6 years (at least that I can tell) to my hands & forearms, with sensory loss and numbness in my ankles, but also involves my digestion, my BP, and "relations" with my husband.

These are questions for my neuro, but am posting here because you've been there. My concerns are:
1. What are my long term expectations? (Since it's A.I. it will progress.)
2. Since it's been 6 years and it's that involved, will I regain any of it with IVGg therapy?
3. What will happen if I can't get the IVGg therapy? A wheelchair in my future?
4. I'm a Graphic Designer by trade, too much time/typing on computer cause my hands to feel like they're run through broken glass and mashed with a mallet - will I be able to work again?

Anything anyone can share is greatly appreciated. I'm scared about this, even though I'm happy IT finally has a name!

Thanks in advance!
dmouse

[FlyingDutchWoman]

I don't have answers for you, because I am a newbie too for SFN, but I want to welcome you on the board and wish you all the best with your health.

[chamade]

I cannot really answer any of those, since I have only had mine since 2007, but at least you have a diagnosis. If I were you I would do anything that I can to start on IVIG - chances are high that it will help since it is autoimmune. If you don't start on some kind of immune therapy, it might keep progressing.
Did they try other things like steroids?

I am also a graphic designer and so far my hands aren't that bad, but my main fear is loosing use of my hands due to pain or motor problems.
Can't imagine the kind of pain you have in your hands that makes you unable to do the work. I suppose you tried neurontin and other nerve pain medication and it didn't help?

Good luck

[dmouse]

They haven't tried any other meds/treatments. IVGg was the only thing offered.
My sister has MS and SFN and she told me they should have done a spinal tap and MRI before they decided on a treatment plan and that I should refuse IVGg. As I understand it they assume it's from my scleroderma. I have the positive ANA, but no patterns were positive. All my labs were normal, except elevated B12 and elevated ANA.
I don't know what to think.
Thanks for the input.

dmouse

[Silverlady]

I've never heard of anyone with elevated B12. Usually the B12 is either normal or too low. Believe me when I say most doctors have no clue about the correct way to read B12. Could you post your B12 number.

I also have autoimmune neuropathy. I have SFSN from Sjogren's Syndrome and Rheumatoid Arthritis. I've had it since 2003 after I had bi-lateral knee replacements. I have never been offered IVIG. I am maintained on methotrexate and Humira. Methotrexate stopped my neuropathy. No... it didn't stop the pain but it seems to keep it under pretty good control. At least it isn't advancing rapidly. As long as I keep my sugar consumption down, take all my supplements and keep moving, I get along pretty well.

Yes, there are times that I am in more pain but I still have my hands.
I'm a jewelry designer and artist. My hands are important to me. Please read the stickies at the top of the page. You have a lot to learn. This forum is chock full of the smartest people I've encountered. Also, check out www.lizajane.org for diagnostic tools.

Good luck,
Billye

[dmouse]

Here is what the lab wrote: Vitamin B12 - 710 (H) (lab range 221-700pg/mL)
I don't know enough about it myself.

Does anyone here have solutions/remedies for the itch? I feel like I'm going crazy from it! It wakes me in the middle of the night, I've got deep scratches on my arms and legs... I thought it might be a food allergy to eggs, but I haven't had eggs or chicken since sunday, and my itch that was gone has come back today so I have to assume it's from the SFN? (It's not from lymphoma, I just had CT scans to check for that.)

I looked through some of the stickies, but I'm raising my 3 yr old granddaughter so don't have a lot of free time. It will take me a little while to get through it.
Thanks!
dmouse

[pabb]

Originally Posted by dmouse

Here is what the lab wrote: Vitamin B12 - 710 (H) (lab range 221-700pg/mL)
I don't know enough about it myself.

Does anyone here have solutions/remedies for the itch? I feel like I'm going crazy from it! It wakes me in the middle of the night, I've got deep scratches on my arms and legs... I thought it might be a food allergy to eggs, but I haven't had eggs or chicken since sunday, and my itch that was gone has come back today so I have to assume it's from the SFN? (It's not from lymphoma, I just had CT scans to check for that.)

I looked through some of the stickies, but I'm raising my 3 yr old granddaughter so don't have a lot of free time. It will take me a little while to get through it.
Thanks!
dmouse

that B12 if fine, and could even be higher.....they should check your methylmalonic acid level, to see if that B12 level is even "honest"...there should not be an upper level on the B12 test......If you had ins i would tell you to get a second opinion from a doc who was not aware of your previous dx.....if you can work at all, can you trade services in some way?

[Koala77]

Originally Posted by dmouse

.....Does anyone here have solutions/remedies for the itch?.....

Hi there dmouse. Unfortunately I don't have an answer for you, but may I suggest that you address your question to our resident medication expert, mrsD?

If you post in the Medication Forum, and she sees your post, she might have an answer for you.

Here's the link that you need: http://neurotalk.psychcentral.com/forum72.html

Good luck.

[glenntaj]

--your B12 level is not high by most lab ranges--in fact, most of us here would consider that level barely adequate; we like to keep our B12 levels in the four figures, so there's plenty for our bodies to use for metabolic and neuroprotective purposes. (What lab had that range, anyway? Many of us tend to think the lab ranges in the US are too low--in Europe and Japan most lab ranges start at 500/550 and have no upper limit . . .)

B12 has no known toxicity level--there are studies from Japan in which people took up to 36mg/day intravenously with no side effects other than a bit of hyperness/invreased energy. (The USDA minimum requirement is 2mcg/day, thousands of times lower; those of us who are older or who suspect we may have absorption problems like to flood our bodies with at least 1000mcg or 1mg/day, so that we are assured of at least some getting to us by passive absorption--we don't rely on the presence of intrinsic factor to break B12 our of food in our stomachs.)

[mrsD]

With scleroderma many patients use Nexium or a similar drug for GERD. Are you using this?

Severe itching can be due to many things. Reactions to drugs,
gall bladder/liver disease, allergies, eczema, etc.

If you list your drugs here (or PM me for privacy) I'll check them out for you. Drug nutrient depletions are a big cause of side effects.

Also, gluten intolerance does cause skin problems, and I'd check to see if you have that too. It will cause neuropathies too.
http://jccglutenfree.googlepages.com/
The Gluten File website has alot of information that may be useful to you.