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thestace posted:
I have not been on in a while since my diagnosis of PPMS. I have issues that appear to be RA like to my "doctor" that is suppose to be a MS specialist. She is making me more frustrated because she will not firmly commit. One minute she says it's PPMS then will say it could be a RA issue. (BTY I have had EVERY RA test done. They say it is NOT RA) The things that I read about pain, especially in feet, hands, arms appear to very common with MS from the posts I read on Web MD. She is more than willing to throw any pill at me, or even go on meds for RMS. I am lost and getting so cranky. I have stopped all "band-aide meds" gambaphentin(sp) and modafinil (this one I had a severe reaction to... tongue swelling, breathing issues. She wanted me on Lyrica but again it's seems like she will just toss pills at me. I guess my main question is....is there a list of MS Specialist with good reputations that can be searched to find one in my area? Sadly my MS chapter thinks this doc it great We are in a pretty small area(Coeur D'Alene, ID) but close to Seattle and Portland. I would drive to find someone that I felt confident in. Any help would be be great. Thanks so much. Trying to stay strong BTY We did the MS walk here and our team raised $915.00. Let's find a cure peps! Then we can just talk about remember when...
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hackwriter responded:
Dear thestace,

Although I understand your frustration about your MS specialist's infatuation with the RA theory, I'm not sure why you are resistant to finding symptom meds that will make you feel more comfortable. It does take a while for us to find meds that we can tolerate, and if you're suffering neurological pain, it's worth trying Lyrica. I found it to be effective after gabapentin did nothing. If indeed you have PPMS, there are no disease-modifying therapies for that form, so symptom management is your only course of treatment.

Have you looked up the Seattle and Portland chapters of the MS Society and asked them for doctor recommendations? The only other thing I can think of is msneuroratings.com, where patients rate their neuro experiences. It's categorized by state.

Kim
 
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thestace replied to hackwriter's response:
Thanks for your reply. I appreciate your words. As you can tell from my minnie rant I am frustrated with my doctor and her methods. She is all over the board. One visit I have PPMS, then I get well now I am not sure, but here are meds for RMS if you want to try them. I am really an at a loss. I understand that my only option with PPMS is symptom management. Again feel like I tell her things aren't working and she tells me to take more of something and take this too. I have been approved for Lyrica and I think I will try it. I really feel like I just said enough and stopped the pills that just made me feel even worse.
I will look into the MS chapters in Seattle and Portland as well as going to the web site you gave me.
Thank you again. You always seem to have words of wisdom.


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