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Re: Island Lady !!!
Mar 16, 2004
[QUOTE=Kathim]Just wondering how and where you are...........

Please give me an update..........just worried about you!!


Kathi :angel:[/QUOTE]

I'm still here! Sorry I disappeared for so long. Long story short: I started having terrible 24/7 pains in my shoulders and thought "Great - now I'm losing my arms, too!" and went back up to Mayo in Rochester. Well, after more MRI's and tests, turns out there was a good reason for the shoulder pain, and that it had nothing to do with my neuropathy: I have a torn rotator cuff in one shoulder and torn tendons in other. How did it happen? Don't know. But it's probably 50+ yrs of wear and tear. I'm now doing special exercises every day the therapist gave me and I'm much better - at least my shoulders are better. I also had a cortisone shot in the torn cuff side.
The neuropathy is the same, but I'm now on 10 mg/day of Nortriptyline, which seems to really help "take the edge off" and calm down the symptoms I was feeling all over. Now, I mostly have just the numbness in my feet and legs and some burning on the legs, but not as bad as before.

So - I was gone for a few weeks, and now am working again, after 2 yrs not working. I was afraid to go back to work, at first, but am glad I did because I'm so busy I actually forget that my legs are numb and burning! Also, in the middle of all this my mother-in-law died and had to go up for funeral, and all that...

How are you??? What's going on with your health?
Again - sorry for the long absence. I'd like to hear how you are doing!
IslandLady
Re: Island Lady !!!
Mar 18, 2004
[QUOTE=islandlady]I'm still here! Sorry I disappeared for so long. Long story short: I started having terrible 24/7 pains in my shoulders and thought "Great - now I'm losing my arms, too!" and went back up to Mayo in Rochester. Well, after more MRI's and tests, turns out there was a good reason for the shoulder pain, and that it had nothing to do with my neuropathy: I have a torn rotator cuff in one shoulder and torn tendons in other. How did it happen? Don't know. But it's probably 50+ yrs of wear and tear. I'm now doing special exercises every day the therapist gave me and I'm much better - at least my shoulders are better. I also had a cortisone shot in the torn cuff side.
The neuropathy is the same, but I'm now on 10 mg/day of Nortriptyline, which seems to really help "take the edge off" and calm down the symptoms I was feeling all over. Now, I mostly have just the numbness in my feet and legs and some burning on the legs, but not as bad as before.

So - I was gone for a few weeks, and now am working again, after 2 yrs not working. I was afraid to go back to work, at first, but am glad I did because I'm so busy I actually forget that my legs are numb and burning! Also, in the middle of all this my mother-in-law died and had to go up for funeral, and all that...

How are you??? What's going on with your health?
Again - sorry for the long absence. I'd like to hear how you are doing!
IslandLady[/QUOTE]



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Hello my friend!!!!!!!!
I was so glad that you answered my reply !!!!!!! And .......glad that you found out something to your shoulder pain although I am sorry another problem for you !!!

Well.........I ditched the one Dr that put me on the Imuran ...... I could not deal with the incompetence of his office staff and found inconsistencies with what he was prescribing and having drug interactions with what I was already on...........so that scared me about him. I do think he knows a lot about the autoimmune diseases but he basically goes down the list of the hard hitting drugs DMARDS til you wear them all out and then.........??????????

Anyway.................I have ended up going back to a Rheumatologist I had researched out and had an initial workup last summer. He is very good but definately thinks out-side the whole medical box and does not just go down the list of DMARDS........
I started back with him in late january and am currently on what is called "Antibiotic Protocol".........his belief that a lot of this is caused by mycoplasma infections and yes....i did test positive way back in August.
Soooooooooooo............have decided to do this protocol.
As for the Peripheral Neuropathy....the other Dr wanted me to do IVIG infusions. The jury is still out on that...... lol..... My New Dr wants to see how I do on the AP for 8-12 weeks and then decide.
I am currently on the neurontin 400mg 3 x day and trying to deal with it. It does help but as we all know someday the neurontin will stop working when my body gets used to it.
Dr. F. feels as when this myco gets killed off some symptoms should show improvement etc. It is very long and detailed !!!!!! It may be something you might want to look into. The book for oyu to read is "New Arthritis Breakthrough" by Henry Schammel.
There are a few websites that is about this but since we can not list..... :(

Funny.........I also had the shoulder problem 4 years ago. The pain was awful!!!!!!!

please keep posting and keep in touch.

Kathi





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