Patients Multiple sclerosis
Not doing so good..
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So hi members, I decided to write here after talking with @Lee__R . I am currently not doing good, even dealing with new pains and new symptoms like; joint pains in my wrists and fingers, even pain all through my arms and neck at times. Headaches have returned, still trying to deal with those and a new symptom...nausea?
Not sure if anyone else deals with nausea from any type of motion, wrther it be in a car..pool swimming or anything, but now I am on a medicine called Banophen which is prescribed to me by my neurologist and it makes it so I can tolerate motion but causes me to have crashing fatigue shortly after taking it.
The other problem is I have been dealing with fatigue anyways and also having frequent bathroom visits where I can't seem to empty my bladder each time?? Anyone else going through all this?..
Anyway, I have an appointment on July 24th so will let everyone know then what my Neuro says since he thinks I might have progressed past rrms and I hope not, but the self Rebif injections seem to have stopped working too.
So tired of this..:(
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@Emma2190 it is all about how your white blood cell count holds up with Gilenya. With the kids bringing home school illnesses all the time, it will get you every once in a while. What you really have to watch for are three chronic infections. That is what tipped off my neuro that my white blood cell count was drastically low. But for a good part of the 4 years I took the med, I stayed relatively infection free. Just be aware, if they pull you, make sure your doc is ready with another med, or the time off I'd hell. I've been going thru testing for a new SPMS med and it's been 4 months and I've had a series of flares, progressively worse, the last landing me in the hospital and now acute rehabilitation.
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@Emma2190 Yes. All medications take time for them to get in our systems, the dosage to increase, and then we can see the effect. I really hope this works for you! Hope to hear good news from you soon. Try to keep positive @Emma2190
@Lee__R and everyone else..
I have been now diagnosed with Primary Progressive MS since the MRI showed more lesions developed and activity. :( My neuro said it had been slowly progressing since my last MRI which was in 2016 and now it has been confirmed.
Not much else to say right now, kind of shutdown and trying to deal with this and other stuff too, just wanted to update is all.
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Just trying to get by..
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