Hello everyone. I am new here and so thankful for the information that I have found so far. I am a 41 year old female who has been suffering with MS symptoms since 2010. For the first 5 years, I was passed around from one specialist to the next, test after test, many MRI's, lumbar puncture, you name it....always told that everything was normal. After YEARS of trying to get answers and basically being told that I was crazy, I gave up trying and just didn't go back to the doctor, even when I had a flare up of symptoms, all the while knowing in my heart that it was MS.
Fast forward to this past March. I woke up on Saturday morning and completely lost the center of vision in my right eye and it hit to move my eyes at all. They felt bruised. I went to an emergency eye doctor that following MOnday and was diagnosed with one of the worst cases of optic neuritis he has ever seen. Without knowing my past medical history, he asked if I had ever been screened for MS. After telling him all that I had been through, he referred me back to my neurologist. At the neuro visit, he stated that it definitely seemed as though things were progressing and that he would like to repeat an MRI for comparison. In the meantime, he gave me three days worth of IV solumedrol followed by a 16 day tapered dose of prednisone. Let me just tell you....I went almost 30 days without any real sleep. I was to the point of hallucination. I lost a ton of weight and could not concentrate to do my job. The MRI did not take place until AFTER the steroids. It was found to be normal, he stated that he truly did think it was MS (definintely something autoimmune) and asked that my PCP refer me out to a specialist.
Last week I met my new neuro doc and just LOVE him. 2 hour exam, many many tests ordered that will be done next week and he eludes to MS as well. He just has to rule a few other things out first. He found one white lesion on the MRI that the other doc said was clear. He checked my optic neuritis (as I still can't see well out of that eye) and said that the nerve is no longer swollen but has thinned due to damage and what I have now for vision is permanent. My right leg often gives out, seizes up or causes me to trip and fall (dragging my toes). That leg's reflexes did not react the same and my left leg. I have HORRIBLE restless leg syndrome in the evenings. I hate to sit down or try to sleep. My left cheek gets tingly and numb. My arms and hands often tingle. Two weeks ago, I was sitting on the sofa watching tv and my left hand seized up in a claw position. It took 10 minutes before I could get it back to normal. I could not get it to move! Lots of weird headaches. A buzzing/crawling sensation in my head/scalp....extreme fatigue...etc.
My new doc has ordered a ton of labs, a new lumbar puncture (old one was from 4 years ago, a orbital MRI (face, head , neck) and thoracic MRI. ONce he riles out NMO and a few other things, he saye he feels confident in an MS diagnosis and the start of treatment. I am TERRIFIED of the medicine side effects but relieved to be getting somewhere with answers....6 years is a long time to suffer and be told you were crazy!!!!
Six Years and I think I may be getting answers....
Re: Six Years and I think I may be getting answers....
Hi,
Well done on persevering. If he finds that it is MS try to get the most complete picture of the damage you may have. The MRI report usually has a lot of that. Expect to be offered a disease modifying drug and probably not much else.
The next bit will be up to you. Learn to read about the good and bad effects of any medication. Remember, you are in charge of what you do next. Always aim to be informed.
Your neurologist is an expert in his field but if what he suggests doesn't work or produces adverse effects please ask us for our experiences. Most of what you have described will be familiar to us.
Think about things like your nutritional habits,what your basic vitamin levels are, whether you do any form of exercise, whats in your diet (gluten, added sugar), whether you have you been checked for underlying infections etc. That's not the neurologists area of expertise or interest so he wont help you with those things but they all matter. You can probably get the answers from a GP but don't expect him to help. They are very wary of patients who take charge of themselves.
Good luck with the diagnosis step.
Regards,
Well done on persevering. If he finds that it is MS try to get the most complete picture of the damage you may have. The MRI report usually has a lot of that. Expect to be offered a disease modifying drug and probably not much else.
The next bit will be up to you. Learn to read about the good and bad effects of any medication. Remember, you are in charge of what you do next. Always aim to be informed.
Your neurologist is an expert in his field but if what he suggests doesn't work or produces adverse effects please ask us for our experiences. Most of what you have described will be familiar to us.
Think about things like your nutritional habits,what your basic vitamin levels are, whether you do any form of exercise, whats in your diet (gluten, added sugar), whether you have you been checked for underlying infections etc. That's not the neurologists area of expertise or interest so he wont help you with those things but they all matter. You can probably get the answers from a GP but don't expect him to help. They are very wary of patients who take charge of themselves.
Good luck with the diagnosis step.
Regards,