Totally understand & sorry your going through this. In '05 my dr suspects MS. Negative MRI subject dropped. '08 more symptoms another MRI, 2 lesions rt frontal lobe. Go through every test possible, no dx.
This goes on for 2yrs, 5 Drs. June '10 more MRI'S, 6 possibly 8 lesions, rt frontal lobe, Diag RRMS. No change in my MRI over the last 2 yrs. Findings are always demylenation ,MS.
The last MRI in Aug, 10 lesions, rt frontal lobe. No change from previous MRI'S, demylenation but not classic of MS WTF???
I asked my Dr what the heck does that mean. She said it's just how it's read, still have MS. I'm convinced the only people that know anything about this disease are those of us who have it.
I was also told even though my cervical & thorasic spine show no lesions they could still be there. Oh well, whatcha gonna do.
I'm having a real hard time with the heat. I can't think, walk, my muscles are twitching like there is no tomorrow. I also get dizzy, nausea & extremely tired. You are not alone & if you haven't already you should get a cooling vest. Just got mine out & will be wearing it tomorrow. Stay cool!! Hugs, TammyView Thread
I was having problems with my right eye & found out it's ON. This is the 1st time I've had this. My question is can it occur in both eyes? It's been a week since it started & now I'm having problems(worse) with my left eye. I was suppose to start Solumedrol but there haas been a problem with my insurance.
Another questions can it come & go? It may last several hours, clear up & then come back. Any help would be appreciated:-) Hugs TammyView Thread
I'm not going to treat it next time. I did a 1day pulse, 1gram sloumedral, & it was way worse then ON. I have no problems with Copaxone but the MS is progressing:(. I will try Avonex but I'm not going to work all week & be sick all weekend, I'll take my chances. Hopefully I'll adjust, if not-OH WELL.View Thread
Ok I've done some pretty silly things like misplace my phone & later find it in the closet under my sweaters:) Tonight I did something really weird. I was washing dishes and had a bowl with water in it sitting on the counter. I picked up the bowl & poured the water out on the counter. I have no idea why I did that, my husband said it sounds like I'm getting senile(sp). I have always laughed off the stupid thing that I've done but this bothered me. Has anyone done something really stupid like this. Is it an MS thing? I sometimes wonder if the meds are causing problems. Any input would be great. Hugs, TammyView Thread
I see my Dr next month & I want to discuss this with her. My reg Dr thinks it's a good idea that I start working part time but didn't have any info as far as disability goes. I'm going to call the MS society & see what they can tell me. As soon as I get the info I'll let you know. Hugs, TammyView Thread
I've done a 5day treatment, by time they hook up the IV & all the prep, it took 1.5-2 hours. It leaves a nasty taste in your mouth so bring gum, mints or anything fairly strong to help with the taste. I also drank a lot of fluids & took valium to help me sleep. Make sure you tell them if there is any burning or itching with the IV. They had to slow mine down, started itching & turning red.
It does not hurt & it really did make a difference. For me it was really expensive, $750 per day, I have insurance but it still was quite a big out of pocket expense. I couldn't afford to do it through an IV the 2nd time so I did what's called smoothie medral. You mix the Solumedral with any type of fluids, smoothie, shake or whatever. I was the worst thing I ever tasted in my life & my taste was not right for weeks.
Now I just do the taper oral steroid, works good, cheap & really no side effects except it is still hard to sleep, Valium!! Are you going to be doing this soon? Please let me know how it goes. Hugs, TammyView Thread