Desperate for answers

[Tammy826]

I have been searching for answers for almost 3 years now, & don't seem to be able to find any. I'm guessing my lack of health insurance is the reason. I started out with extreme fatigue & weakness, I had an MRI (showed lesions on my brain , periventrical & subcortical), vitamin B levels are normal, test done were they shocked my legs(it was normal) & was told I had probable MS, then told that no, I didn't have MS. This was a year ago that these tests were done. Now I have started seeing a new family practioner, who performed some neurological exams in his office(I couldn't stand with my feet together & my eyes closed, I fall over), I couldn,t smile on one side of my face, He had me to stick my tongue out & I could move it to the left but not the right,I can't walk with one foot in front of the other.I came to this Doctor after seeing a neurologist (who was very rude & would not let me talk what so ever), She told me nothing was neurologically wrong with me & didn't do any of the tests the new family practioner had done. So I'm very frustrated & confused. Whatever this is has started to ruin my life , as I was a very active person before. Sometimes its like someone flips a switch & I feel better, sometimes for a month or more. Then here it is again & it always brings new symptoms with it. I can"t walk at times & when I can then not very far( my legs get very weak & tremble), the fatigue is horrible, I have tremors & now my muscles randomly twitch, my right eye feels like someone sticks a knife in it & I'm very light sensitive(wear sunglasses in the house) , plus it hurts when I move my eyes, my legs & arms feel like someone tied concrete blocks to them, I have decreased sensations in my hands & feet (like I'm wearing gloves), & as if that weren't enough now I feel like waves of electricity run through me. I have had my husband come to watch my muscles twitch , just to prove to myself that I'm not competely crazy.

[Quixotic1]

Dr. K is MIA.  I answered your post over on the Patient MS Forum.  I hope it helps.

Quix

[mser]

Hi
Your story is oh so familiar. I was probably diagnosed in 1987 after having almost every one of your symptoms. I too had been to a neurologist who actually told me not to return to the clinic as I was wasting their time and there was nothing wrong with me. As a nurse and well knowing something was wrong I was still devestated by his rudeness and belittling manner (actually lack of manner). I did refuse to see another neuro doc (VA pt) for several years. I decided to take matters into my own hands and just ignore them and take care of other sx I could deal with. I saw my internist and urologist and started seeing a great psychologist to keep myself supported emotionally while I struggled to deal with the what if's. I had positive MRI's also. It wasn't until 2 years ago when I fell down a flight of stairs and ended up in our city trauma unit that my docs started wondering what was wrong. I didn't remember being in the stairwell, didn't remember driving my car 2 days earlier-several really odd things were happening. A repeat MRI showed my lesions had gone from 3 to over 20! I had a very positive spinal tap and boy did my docs change their tune. I was started on Copaxone and am doing quite well. I do have extreme fatigue, bladder & eye stuff but I am walking better, and travelling again. One thing I did to help the fatigue was to start walking/swimming/moving more to stimulate my muscles to get stronger. I just factor in a nap every afternoon (almost) and drink 2 small cups of coffee a day. I would really recommend everyone with MS keep moving as much as possible and this is from a woman who spent over 10 years off/on in a w/c. walker and crutches. I stumble sometimes but not nearly like before. I did move out of the noisy city to the country and away from the damp weather to a warmer and dryer climate and fell in love and married a wonderful man who had polio as a young child. Life does get better and hang in there, it sounds like you found a better doctor. This is a great place for questions! steph  

[Priscilla83]

I understand your frustration from being pushed off by your doctor. I had a 3rd ms attack and received treatment last week. My original neuologist just brushed me off saying it wasn't likely and asked me to wait and see. i was having severe painon my left chest, near the breast area and he thought that didnt connect.  I always thought the entral nervous system controls the whole body and anything was possible. I had been having flare ups almost every 3 mths and this is the 3rd one. I may not be a doctor but i knew what my body was feeling so i got another clinic doctor to refer me for an mri and communicated with another neurologist from a government hospital. The scan showed new lesions..this time attacking my brain stem. so not all doctors know everything.

[jed9999]

A related discussion, To people getting **** FROM DOCTORS: was started.