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StruckTwice
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Thanks for not being offended by my over excitement. Sorry it took so long to get back to you. I had 3 financial situation crop up that I needed to think about resolving. So most of my attention has been on that.
I thought Crohns disease was an autoimmune disease too?. I would like it if you picked up that book too, because then I would have someone else to talk about what I read.
I've been on Tysabri for a year now. I still have MS...so I'm conflicted about it---not conflicted enough to stop & I believe it is the best for me...but it is over marketed--so expectations are great then its kind of a dissappointment whem MS is still here , but not worse. The biogen nurse calls every 3 months to ask how it is going, I tell here each time...if the marketing were not so intense, I would be happier with it.
I recently changed from my first infusion center in a hospital where I didn't get along with the nurses. I went there a year, so that affects my view on TY. I switched to a clinic my doctor recommended...the clinic rents room at a small community hospital.
I like that much better. She is a neurologist & her husband is a gastrenterologist and there a brochers on MS & Crohns disease. It's like Tysabri patients are welcome there. At my last infusion center, they acted like they were to busy, I was interrupting their day by showing up at the infusion room :(
Now that I am going to this new infusion room, I expect I will meet some people with Crohns Disease using Tysabri.
Thanks again for lowering the stress that was building in thatr thread & if you decide to go to Tysabri...you have a DS friend to ask questions on it...but not about Crohns Disease. Fortunately, I don't have that one!
Lynn
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Thank you for stepping in on that suppression thread...I was getting over excited about it.
I read your profile after your response that "calm the waters". I'm not certain how I got so over excited last night about it....
But I saw on your profile you have crohns disease going on too....
iamwoman does too, both Crohns & MS going on. Does celiac disease count ?
Thats a gastrointestinal disorder, if so there is hazymay & Sentinel too that are dealing with gastroinststinal disorders and MS.
http://www.dailystrength.org/peopl...
http://www.dailystrength.org/peopl...
http://www.dailystrength.org/peopl...
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Perhaps you already know from a Crohns support group. But if not I wanted to point them out top you. And thanks for the response, I hope I have settled down now.
Lynn
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hope your testing for MS comes back negative... I will keep good thoughts... let me know!!
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It is nice to have a voice of reason in the political chat...thank you
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Well, I actually chickened out, which isn't like me at all. I think it was because my dr. gave me a choice, an EMG or go back to MS specialist. I first said test and now I am going to go to the specialist.
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Close Health Care Reform
This is the most important issue for the US.
Close Crohn's Disease & Ulcerative Colitis
Misdiagnosed with IBS for twelve years until ER visit. Hospitalized six times in the next two years. Now maintaining -- still trying to work, but seem to getting other problems (and don't know if they are caused by Crohn's).
Treatments
- Asacol Not Working
- No change in my symptoms
- Azathioprine Too Soon to Tell
- Doctor decided to switch to 6-MP before we could tell what it was doing.
- Azulfidine Not Working
- Side affect: Headache
- Prednisone Working / Worked
- Only when I have severe flare ups.
- Purinethol Working / Worked
- Purinethol Working / Worked
- Positive Thinking Working / Worked
Open Multiple Sclerosis (MS)
Have not been diagnosed but have many symptoms -- First trip to neuro this Aug and she started me on the neurontin.
Treatments
- Neurontin Too Soon to Tell






