Progressive Worsening

[ampky]

Five years ago, doctors removed a cavernous hemangioma becuse it was shown to have burst several times.my condition is progressively worsening to where I (F, 39) don't have any balance, have "electric shocks" in my arm and leg  (among other things such as neuropathy, double-vision, etc.) I have gone from barely needing a walker topretty much  needing a wheelchair.

Even after removal, I keep having "stroke-like events". I now feel as if I have to "convince" Neurologists that these are happening and my condition is worsening. (I've seen four different Neuros.) Because the hemangioma was near my braisteam, Neuro think i am trying to "dramatize" my condition.

I have made a lisr of symptoms for Neuro visits and made timelines, etc. but nothing is working. Other docs (Endocrinologists, Rheumatologists) have said it looks like Multiple Sclerosis. What can I do to have Neuros cosider this?

[Lulu54]

hi! I'm glad you found us here.  You probably didn't notice that you wrote on a very old post and most people won't take the time to read your well written introduction.

I hope you will take the time to start a new discussion and share your story with us.  We always learn so much from others who have lived with MS for decades.

best,
L

[sadylady]

MS? at first you don't understand what this will mean to your life. You try all the meds the doctors tell you to take. Thank you tire of injections and feel the meds are worst than the MS itself.
When I was in my early 20's I experenced blindness in one eye, after 6 weeks my sight came back. over the years I experenced numbness, tinging and a lot of leg and feet cramps. The doctor could not tell me why all this was going on, not until I was in my late 30's did I find out.
I was in an emotional state when my speech started slurring and I would get this over whelming surge in my head just before I knew that the next word would come out in a slurr. I was working at the time and my co-workers thought I had been drinking and looked at me odd.
My family doctors could not explain what was going on but thought it might be MS. They sent me to UCLA Neuro and that is where I learned that I might have MS. They did an MRI and a spinal which proved to confirm the MS. I was happy to know an answer at the same time I was devastated. They told me that there wasn't much they could do and that it would shorten my life span to the age of 65. They started me on beta drugs and I used them for about a year when I decided that I didn't want anymore pain from the injections. Well i'm in my late 50's now and haven't taken any other drugs except paxcil for depressiion and I only take that because if I stopped I will start crying and not able to stop. I worrie some that I might only have a few years left, but than I put on the back burner and I'm thankful that I can still be active. Living with the cramps is the worst at night when they wake you up from a sound sleep and you have to start walking to help get rid of the pain. The burning sensation I have is behind my legs. I also find it hard to explain to people what I'm feeling and I don't get sympathy from my family members because they just don't want to belive there is anything wrong with me. So I go on living with my MS and I do keep it to myself. I guess that is why I decided to write down a few words.

[ampky]

I had an MRI and it shows leisons, but Neuros say it is from the hemangioma, but thanks for your reply!

[figuerpa]

Ampky,

I am sorry for what you are going through.

Sounds to me like you need to push your doctors, after all they are working for you. Have they even run an MRI to see if anything is going on?

Talk to your family doctor if your neuro won't listen and see if they will order and MRI and have them send a copy to your neuro, and ask for a copy for your records. I had to go to my family doctor before my neuro finally started listening to me.

It is the weekend and it gets real slow around here, but I really hope someone can tell you something else that might help.

Good luck and keep us informed


Paula