Quote:
Originally Posted by sunnyday
Hello to everyone and thank you for looking at this.I am really in need of answers as I am getting worse and need a dx so i can then do what i need to do to stop getting any worse than this.
I am female aged 43, 3 years ago I suffered an episode after a virus had put me in bed,then i woke one morning after a popping head pain and was unable to walk as normal.I could not co ordinate my hand movements and i saw my doctor who reffered me to the hospital. I had a brain mri which showed three lessions and the neurologist told me they were not looking at anything other than ms.
I picked myself up from that after the initial shock and tried to carry on as best i could.
I have had various symptoms since including, heavy, weak legs.The left leg being weaker with a vibration feeling left knee when touched. My left arm is numb and i can not feel the needle when having blood taken. My face is numb and most parts of my body, some more than others. I limp and find my left leg needs lifting when i walk.
I have other symptoms which include piercing head pain on one side, piercing ear pain, eye pain and brain fog with a spaced out feeling. I can only walk or stand for 10 minutes then heavy legs. I get tired making my bed but some days are better than others.I have learned to do less and pace myself.
I am told i dont have ms now since lumbar puncture results normal and evp normal, also second brain mri unchanged.I have seen 2 neurologists had ana bloods done and for hughes syndrome, diabetes, thyroid a little abnormal but all normal.The neurologist all but said this is all in my mind, even though i am not an anxious person or one that wishes to be like this (does anyone) i just want to be normal, or at least know how to treat my problems and get on with life.
I went back to neurologist with the hope of getting help for my increasing symptoms and legs but find that the 2nd neurologist now thinks me not a neurology case, so what am i? at least the 1st neurologist said he thought i had fybromyalgia and had ms symptoms (although he no longer thought ms), so i could see him again.
I am sorry to go on, i am so confused and feeling ill with what seems like no help.My doctor is good but has no idea what to do with me now.I feel anxious only because of interegation type interview with 2nd neurologist, which only makes me feel worse.(i saw 2nd neurologist for another opinion)
I am awaithing mri of the spine although 2nd neuro thinks nothing will be found (he must be physicic)
Thank you so much to all who read this very long report, which i apologise for but i hope you understand and can offer any help.
Best wishes
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SUNNY:
My dear "Just MS" is a load in and of itself! We have a 40yr old son whose symptoms started ALMOST like yours--only got worse and mimicked a stroke. One MD At a Tufts U hosp felt he needed a heart transplant as his heart had enlarged!
I can't go into all of it with you but one thing I know is that the BEST thing that you can do for yourself is get into a support group. I really think that you should consider going to to a large and prestious hospital, such as the Cleveland Clinic, Mayos, Harvard Med.school--one that has a pristine reputation. YOu can ask your primary doctor about it--no , TELL him you wish a 2nd opinion and he can set it up for you. Try to find one that isn't TOO far from your home as it makes it easer.. OUr son lives in MA and is 2 hours from Boston and now is in a research MS group at Harvard.THAT is what you need. He goes there every 90 days or so and is checked out and they have all his previous papers from other MDs on hand. They evaluate what is the BEST medical regimen for you and then follow up on it to see how you do! You will feel much better as you know you're doing the best you can--and that helps. YOu might also have an MS Support group in your area.Talk to your Dr.'s office to see if they have a list of different support groups. Another option is to call a local hospital to see if they have such a list. Some people swear by them, others are lukewarm, but you won't know if it's for you unless you try. The symptoms for MS vary a LOT. There are several kinds and one is treated differently depending on what kind you have. (Steve has what is called "relapsing-remitting MS". Steve give himself a daily shot of Copaxone (done like a diabetes shot). There are meds that are done by IV once a month. Good luck--go try. Don't give up!! JETTY