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.View Thread
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...View Thread
It's been a while since I have posted anything. Have been giving a firm diagnosis of Primary Progressive MS. Taking a few meds to "help" with some of my issues. Some days I think they help...others not so much. I have always been an active person. Lifted weights, walked, skied, bike riding, etc. Have stopped almost everything. Just hurt and so darn tired. Go to work and just crash when I get home. Looking for some ideas for exercise. Tried weights the other day and hurt so bad and not even 1/2 of what I use to do. I live in north Idaho and we have lots of snow so walking, biking outside are no good right now. Have heard that yoga can help. I know nothing about it. Just have seen different positions and think there is no way I can do that..(plank) Can't even do a push up now Hurts my hands too much and can't support my weight on them now. Anyway..enough whining. Feeling down and need to do something plus the meds they are giving me have a wight gain side effect > Any ideas are welcome. Thanks for listening and letting me whine a bit. Try not to but last 4 weeks have been harder than usual. Thanks again. Stace View Thread
Well I thought I should get back and give an update on my health. After many months of tests and questions I am being told that I have Primary Progressive MS. I have not had any form of relapse since my symptoms began again in September. I am glad to know I am not crazy but now trying to figure out how I can really help my body. I am on an anti seizure med to help with my tingling and some days it seems to help. Also on 6,000 ibu of Vit D. I am taking high dose Vit B to help with my fatigue. Think I am getting use to the way my body is now and just really try to enjoy the days that I don't feel so bad...few and far betweetn now, but I am not giving up. If anyone has adivise for people with primary progressive I would love to hear it. All I have read is just more about treating the symptoms vs treatment for this type of MS. Thanks for you support with your previous emails.View Thread
Has anyone said or tested you for psoriatic RA? I have a friend that was diagnosed 4 years ago and her symptoms were VERY similar to what you are talking about. The pain, the eyes and the psoriasis which was on her elbows as well. It's worth asking. Good luck.View Thread
Thank you for your response. I have an appointment with a different neurologist, but not until the end of July. Crazy, but I am willing to wait. Had an eye test done a few weeks back that confirms I have optic neuritis and my currect doc still does not want to say I have MS. Oddly though she is willing to put me on MS meds? I also forgot to metion that when I get sick with a cold or flu my symptoms go away. I have had a cold for the past 7-8 days and felt great. Now that my cold is over, I feel my other pains coming back. Strange? Don't know if that is common for people with MS. Again, thank you for your words and I promise I will keep you posted.View Thread
Thank you for your input. I have been searching for a MS specialist in my area ( it's rather small ) and have found one. Plan to call and see what I need to do to transfer my information. Thank you again and I will keep you posted.View Thread
In 2005/2006 had weakness in arms, right leg & fatigue. This went on for about 6 months. Had MRI ( head and cervical) 2 spots in the head. Went to neurologist and was told I had carpal tunnel. Thought he was nuts. After time my symptoms left. 2010 had fatigue and numbness in right leg. Arms slightly. It went a way in about 2 months. Did not think about it much. Sept 2011 extreme fatigue, weight loss, numbness and tingling in both arms and right leg. I also have issues with my right eye, comes and goes. Feels like my eye is going to pop out of my socket, it is sore and I can't focus it as well.( like a film over it) Have had MRI (head) shows 2 more spots. Had Spinal (neg) Go in for an eye test ( not the VEP) I also have times where my hands get super hot and feel swollen. I am very sensitve to heat ( sun or hot water) I have had only about 15-20 days pain free since Sept. Not feeling confident in my doctor. Frustrated but trying to be positvie and proactive. Does this sound like MS to anyone. Anywords of widsom would be greatly appreciated. Thanks View Thread
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