Just returned from follow up @ C.C.
 

Last Friday was my follow up appointment, post skin biopsy. I was with the doctor for 60 mins, face to face consultation. Unheard of!! He is convinced that the Alpha Lipoic Acid 600 mg has been my saving grace and he is ready to start weaning me off of the Neurontin. I was originally on 2400mg / day and after starting the AAL, I weaned myself down to 900 mg / day. He feels that I am ready to cut 1 dose each week and be totally off the Neurontin in 3 weeks. Now I am free to start back on it if I run into trouble, or can double the dose of the Alpha Lipoic Acid. He also recommended the following:
Celiac Antibody Testing, specifically Endomysial IgA Abs, Gliadin IgG Abs, Gliadin IgA Abs, Transglutaminase IgA; Total IgA level. If pain returns after weaning off the neurontin, start Doxepin 25 mg at bedtime with 800 mg of Motrin for break through pain. I am willing to try it.........I just hope it doesn't flare up the PN and send me into a tailspin.:Sinking:

My new problem is my PCP thinks I have some form of arthritis brewing. I have pain in the fingers, feet, knees with swollen joints and feet that feel like I am walking on wood when I first get up in the morning. Tried a short burst of steroids and that really helped. But now about a month later, hurts just as bad, if not worse. Can't get in to see a rheumy locally for about 6 months but can go back to the CC if need be.

I also work a 40+ hour week. Do all of the cooking, grocery shopping, bill paying, laundry and anything else that pertains to the house. I too feel like I am stressed out, yet get little help around the house. I have decided that I am getting at least 8 hrs of sleep each night :Zzzz: and i am only cooking 4 nights a week. I don't care if they eat a cup of dirt on the other three nights, I am not cooking!! Maybe then I will get a little more help.........time will tell.

If you haven't tried the Alpha Lipoic Acid, maybe ask your doc about it. It doesn't work for everyone, but doesn't hurt to try. I just wonder why it took 14 years for someone to suggest it. But I am sure glad they did. Gotta go get ready for bed so I can get those 8 hrs of beauty rest!! Hugs to all :grouphug:

I am glad to hear that things are looking up for you!

Please keep us up to date, and also with the Celiac testing!

The supplements can work and you are a prime example of that, too!

That's great you're doing well on the RALA and will be getting off neurontin.

:sorry:to hear about the heavy work/domestic load you're carrying.
Just wondering if there's any way you could get some assistance with the housekeeping/shopping?

Work and house is a very heavy load to be carrying when one's not 100%.

Take care and best wishes,

Sheltiemom

Why couldnt they just run the blood work while you were there? and has your Neuropathy gone body wide?

I am glad you had a good follow up. Could you ask that doctor who spent so long with you of a recomendation for a rheumatologist? Maybe he could suggest a good one at CC and often CC docs can get you in to other ones there quickly. When I was at CC I got squeezed into the pain doctor from another doctor. I hope you feel better.

Lab tests
 

Actually, they could have but I was trying to hold off until after the first of the year since my insurance started 11/7/10 and I did not want to pay a deductible for 2010 and then in 2 months start over for 2011. Guess my body had other plans because i had to have blood tests drawn from my PCP for sed rate, C Reactive Protein and a Rheumatoid factor before they could even begin the process of making a referral. Apparently it will take up to 6 month but even longer if you don't complete the required labs. So, i will end up eating the costs of those but felt the testing for gluten sensitivity could definitely wait until after the first of the year.

Forgot to answer your 2nd question...my bad.
 

My neuropathy has never been body wide, thank heavens. Mostly the hands, arms and feet, half way to the knees.

Long drive
 

Actually on the day I was at CC, I think the neuro would have gotten me into the rheumatologist but I had such a long drive ahead of me (3.5hrs) that I just wanted to get out of there. I wasn't feeling horrible, I had some pain in the joints but not like what I am experiencing now. He thought maybe gout, but I was quick to rule that out. The joints are not red / hot. Just hurt with movement, especially the wrong kind. OUCH....... If I really have to wait 6 months to see a rheumatologist, I will call in some favors and ask the docs I work with to pull some strings. Unfair, but you do what you have to do!!

Is 600 mg of ALA ok to take? I have only been taking 100mg....maybe not enough?

100mg of ALA (alpha lipoic acid) is not enough. All the studies used 600mg or MORE to show effect on PN pain.

100mg of r-lipoic however, the newer one, may be enough because it is far more potent.