I am a RN and recently have undergone testing for MS. My primary MD sent me for a MRI d/t pain all over, numbness and tingling in both arms and hands, inability to concentrate, not saying words I meant to say, dizziness and falling & continued and worsening fatigue. MRI shows only 2 brain lesions. Neurologist looked at MRI before doing anything during my initial visit and said "It is not MS." She contributed it to migraine headaches that I haven't had since age 13. (I am 44 and only time I have a headache is when my sinuses are acting up with is usually once a month or so.) Was diagnosed with fibromyalgia 2003 and she (neuro) felt this was all coming from rheumatoid/autoimmune side. Saw rheumatologist who said I knew my fibromyalgia signs and symptoms and I was right in thinking the numbness and tingling, dizziness and falling was not coming from my fibro. Further testing - lumbar puncture CSF negative with positive IgG, IgA and IgM proteins in serum?? (This also checked by hemalogist and all blood work comes back normal.) Nerve conduction testing done on right side shows severe carpel tunnel (Neuro wants me to see hand surgeon for this) and decreased to some absent reflexes in right leg, which was attributed to a severe back injury in 1999. Visual Evoked Response abnormal, showing up in both eyes and BAER was normal. I have an aunt who has MS and she said her LP was negative. Have had several flare ups of fibromyalgia for several years but this has been the worst. Have been out of work since last week in January. Cont. with pain and fatigue, CTS in both hands but dizziness is getting much better and I haven't fallen in 3 weeks. This has all been going on since January and I am about at wits end. Should I seek a second opinion or get my shot of Decadron and tough it out and see what happens? Thanks for any advice! Vallen
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As I read message boards pertaining to MS, your story is not so uncommon. You have so much going on with all these varied symptoms and your tests are inconclusive. I cannot imagine how terribly frustrating all of this must be for you. Being in limbo is maddening. You wrote this post back in May so I am hoping that you have more of a definitive diagnosis by now. I have heard so many stories of people waiting years, sometimes over a decade, before getting an answer.
The thing is, most folk write their questions and posts when they haven't gotten their diagnosis or answer yet and then don't return to say what happened. I am hoping you come back and let us know the outcome if you have been told anything.
Thank you for your question and I do apologize for not having any solid answer for you but to say...I sure hope you got that second opinion.
Thanks for your post. From what has been posted by experts and patients, it can take multiple tests to rule out other conditions before one can get to a proper MS diagnosis. Don't give up - keep going until you are satified with the answer whatever it might be.
all the best, sue
I'm not a doctor or expert, just a person living with MS. My advice is to definetly get a 2nd opinion.
Update for myself, neurology, hematology, and rheumatology released me, short term disability denied d/t no definite diagnosis. Another neurologist office in the Knoxville area who was supposed to be very familiar with MS refused to see me as a second opinion. So I saw my original primary care physician who actually found the fibromyalgia and got my Decadron shot in June. I am now back at work 36 to 60 hrs. weekly as a RN in the hospital and praying to be able to cont. until I can get caught back up financially. This to me has been a medical nightmare! My PCP agrees there was more than fibromyalgia going on but with nothing conclusive all we can do is wait. I do have to follow up with hematology every 6 months as I was diagnosed with Mgus? Pre-multiple myeloma that has a 20 % chance of becoming true multiple myeloma. The signs and symptoms I was having had started to decrease slowly over May and June and by July I was able to go back to work. I was instructed to start out slowly but with 2 sons in college and a single mother with multiple bills have no choice to work while I am able. At this point the only hope I have is in God and my will to not give up or in. Good luck to all who face the same battles.
Thank you Ken for your advice. Unfortunately, Dr. Wray's office is who refused to see me as they do not do second opinion visits per her staff when I called. Should I have to see a neurologist in the future, I will certainly ask to see her. I have heard she is very good, but then the neurologist recommended to me was supposed to be top of her field at UT. I think she just had so much going on she didn't take the time to care. Lesson learned. I have been doing well, continue to work with occassional Fibromyalgia flare-ups but the only lasting symptoms from last year is occassional CTS which comes and goes. God Bless you and your wife and best of luck to you also.
Hi Vallen,
I'm sorry Dr.Wray wouldn't see you, but she does only see positive MS patients that are refered. If the steroid shots are helping you I say continue them, also B12 shots are very helpful with FM. Jackie (my wife) read on line that if you increase vitamin D intake above RDA it helps with joint and muscle pain. She also just now told me that a lumbar puncture will only show positve during an MS flare up. We are in Maryville if you want to talk let us know, we have learned a lot abouut MS in the last 10 years. We will both keep you in our prayers, for he is the great physician.
Ken
Vallen,
I am where you are; Limbo land mania. My primary says if it looks like a duck, quacks like a duck and smells like a duck, then it's a duck-pond or no pond. I'm going to a MS specialist within the next few weeks. I am a working mother and (am married to a nurse-who is more sceptical than concerned) I feel your pain about the $ adding up to less than the bills. It is very frustrating to have MS (or any other disease) with no diagnosis to confirm it for disability. The problem (espceially with Neuro's) is that if they don't have an answer then it must be all in your head or "something else" they fixate on. God forbid they can't answer something, that might make people think twice about they capabilities of being a falible human!
Don't give up! This site has been a blessing to me. It has taken me over 3 years of major events to get this far and it's been over 10 years since the onset of my first symptoms that were mistaken for "something else".
I hope this helps. The experts here are wonderful! Thank God that they are so willing to help.
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Hello,
you stated you are in the Knoxville area, as an RN, have your primary care Ph recomend you to Dr. Sybil Wray at Baptist west she is a specialist in MS and has written many papers in medical journals it takes a while to get in but it's worth it she is associated with many pharmacology studies and is sincere,caring and loving to her patients. my wife has MS and she loves her.
Best of luck
Ken