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

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

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?

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.

--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.)

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.

Thank you everyone for helping me understand! I really do appreciate your time!

MrsD - I don't take much of anything as far as medications go. My old rheumy tried putting me on so many different things for my "CREST" but I hate taking meds. Would rather try homeopathic, or just deal with it. For my stomach I take an occasional Pepcid AC - OTC. I have a small hiatal hernia, no ulcers, minor thickening of the esophagus from GERD. I do get a pressure under/behind my right rib but CT scans, a Hida scan & labs all say organs are normal. They can't figure it out. The gastro prescribed Omeprazol 20 mg - 2 at bedtime but I don't take it because side effects are headache, nausea, diarrhea, belly pain...
When the itch is just way too much, I take a single Benadryal at bedtime, but not every night. For occasional sinus headache/pressure I'll take an advil cold and sinus - but it's very rare - maybe 2-3 a month?
When my energy level is really low, I'll take a B 100 Complex. Sometimes I'll take 2, spaced a few hours apart.
I don't eat McD's, BK, or any of that garbage, but I'm not big on many veggies. I was taking the B Complex 2x daily when I was employed, along with Vits A & E, Calcium/Magnesium and potassium. I kept it up for a few weeks after I lost the job, but grand-daughter has gotten me distracted enough that I fell out of the habit. All that did help with the energy, but not much else.

I use Dreft for all my laundry, including bedding and towels, Basis all natural soap for showers. I avoid all perfumed lotions and soaps.

I also have what they've termed a multinodular goiter, but all my levels are "normal" and I don't have the TPO antibodies. They are keeping an eye on the solid, dominant nodule, but it hasn't grown in over a year.

I hope that helps fill in the gaps. Again, thanks for helping me understand!
dmouse