Rash? Improvement? Worse AGAIN?!
Well, the 3rd day after the Port, the 2nd day after the Tysabri, I developed an unusual rash on my neck and chest. It is not likely due to the Port, so says the Radiologist. The Neurologists says that Tysabri rashes are usually all over the body. I will be calling the Tysabri Touch Program to ask them on Monday though.
One thing I am suspicious of is Latex. I always get redness and swelling just where band-aids touch my skin but this time I had gotten a blister where a dressing was. I have to wonder whether this could be a reaction to latex. I will certainly be discussing it with my Dr’s soon.
About 12 hours after my Tysabri was over, I noticed that this Icy Hot numbness in my right knee, calf, thigh and toes had almost disappeared. My bladder issues improved also. Until yesterday morning that is. So a total of 4 days with improvement. My neurologist was not sure at my last appt. whether the symptoms in my right leg are MS related due to the fact that I have a lumbar spinal problem and fusion there as well. So we were waiting to see the Ortho Doc to see what he thought. Since I had improvement for 4 days on the Tysabri, it makes me wonder whether these new symptoms are an MS relapse.
I woke up yesterday and guess what? I could not pee again. I know, TMI, but I can’t keep it in, literally. It was unbearably painful until I could get a stream going. I see the Urologist on Tuesday this coming week and I am hoping they can explain it all to me. The coincidence is that the Urinary Retention came back the same day the leg symptoms came back. Interesting. Is it my back or my MS; my back or my MS; my back or my MS?
It all gets a little irritating. I just want to pee and walk. That isn’t too much too ask is it ?
Filed under: Tysabri, feelings, health, multiple sclerosis, photography | Tagged: Foot, ms, numbness, Port, rash, Spasticity, Tysabri, Urine retention
Not too much to ask, indeed…All I want is that so-called “normal” I’ve heard about. It’s going to be 102 degrees here, so I’m at work in an air-conditioned building, and will go home and go shopping somewhere until the sun goes down. Is there anything from LA you guys want me to bring? More Trader Joe goodies? Sand from the beach? I can start to pack, now, in two separate bags, so I don’t have to unpack and re-pack between trips. You can’t believe how much I’m looking forward to the trip(s). We had a garage sale yesterday with Miranda, the lady who lives down the stairs, and made a total of three dollars. Oh well, it was a beautiful day, birds chirping, and neighbors stopping by to admire the yard, (I’ll bring pictures) so nice to be not in the office. Just a thought: Could the rash be part of the lupus?, or heat rash? It’s unusual to have one in only one part of the body unless it’s allergy-related. time to go..Love, Mom
Just wanted to assure you that rashes are a really common symptom of Tysabri. They usually go away after a week and not everybody gets them, but it’s one of the first thigns my neurologist asked me after I started on Tysabri because he had seen a good deal of rashes in the clinical trial.
They are usually pretty localized and not all over the body. I’ve had a couple, but I chalk it up to being on a powerful drug and have had relatively few side effects for which I’m thankful.
Good luck. Hope it goes away soon. Maybe try a little benadryl and see if it helps.
Most definitely not too much to ask. And, wouldn’t it be nice, while you’re asking, to know EXACTLY what to do and not have these guessing games?
Thinking of you here…