Progressive Symptoms; Variant MS?


#1

I was diagnosed in 2004 after a number of years of now obvious symptoms. I have many progressive symptoms now including weakness in diaphragm, lung muscle, inspiratory muscle, core trunk stability. My walking and extremitity neuropathy are much better than they were several years ago. I have a hard time sitting up. I often fall. I get frustrated and I keep going. I so rarely hear from others like me who have these progressive symptoms even while it appears that overall the MS has slowed. I have new white matter lesions but otherwise have much less change than what my MRIs showed circa 2003-2005.

I did not respond to any of the shot therapies with my symptoms worsening. Ihad allergic reaction to tysabri. I am waiting to see what my options are. My MS seems so odd and different than others thjat have MS. I was in a wheelchair within months of diagnosis but now walk pretty well. EDSS below or at 5 now. Butr my overall weakness and GI and swallowing and breathing involvement seem to confound my neuros and leave me stranded. I have other involvement from other medical conditions. It is hard and it is lonely.


#2

I guess you did try other treatments, sorry to here they did not work. Hopefully there is a treatment out there for you. My wife has to have a hip surgery she keeps putting off. She said she will have it done this summer, hope she does and hope it helps, she has developed a bad limp.The doctors said it was from the sterpoids she took to treat the numbness and weakness she felt on one side of her body when she was first diagnosed with MS, and it caused a type of nercrosis in her hip because blood was not being circulated there, again caused by the steroids, which goes to show, what’s good for some may not be good for others. Hang in there, my thoughs and wishes goes out to you and everyone of you who suffers from this disease.

knightshotter ms-cpt2910@lists.careplace.com wrote:


#3

I have been thinking about this post most of the day.

My first attack happened after having allergy shots for 3-4 months. I experienced flushing, throat tightening and then a surge of asthma symptoms. I am on advair which helps and the inhaler. My second attack was right side numbness and pain, and vertigo. So I don’t know if the lung problems I have are asthma or MS? They are treated like asthma right now.

I did have a great deal of back problems with my second attack and subsequently have been doing physical therapy core training. But I also have 3 herniated disks. I think compensating for my weak side and anxiety set off the back problems. Cortizone shots helped a great deal, so did core strengthening yoga stretches.

Dawn