Search Discussions

Main Content

  • DaniAnn
    Hi All,
    I'm not yet diagnosed with anything.  My inital symptom was this strange feeling the my legs were getting heavy, then light again as I walk, acompained by twiching.  Then I started falling.  Following that came the difficulty breathing because if felt like a tight band wrapped around my rib cage.  The symptoms come and go over the course of a few weeks at a time.

    By now they have rulled out everything but MS and Lyme disease.  I have a new symptom of dizziness, and everything I've read online seems to point toward MS.  But my doctors have concluded that there is nothing wrong with me and they have told me it must be "pscychosomatic,"... as if i want to be sick!  

    I've tried to go along with them.  I've been seeing a psychologist who doesn't think the "all in my head" thing fits my picture.  I took my MRI to a neruoradiologist who said it was not definitively diagnostic but that there were some suspicious lesions, but my neurologist won't hear it.  He acts as if I'm just attention seeking.  

    It is difficult enough dealing with these strange and awful symptoms, but to be told I'm crazy to top it off has me questioning my own sanity... which is crazy-making!  I'm really feeling down.  Hopeful to get a second opinion but they are booked weeks out.  I don't know where to turn in the mean time, so I come to you all for emotional support.

    Thanks for "listening"
  • maria1
    Dani,  I would ask the neuroradiologist to please recommend a doctor for you to see. Make sure you get copies of all your tests and reports, they are your property, before you change doctors. Switching doctors will only get the old docs notes transfered not tests .
    The tyranny of md's is they always think they are right even when  they are wrong!!!!!!!
  • DaniAnn
    Good idea to ask the radiologist! I hadn't thought of that... but I did ask the same med center if I could see one of their neurologists. Now I just have to wait for my Nov appointment. The (additional) price of private-pay is the nice long wait 🙁
  • kleighallen
    It is definitely time for a new doctor.  And I agree with the previous advice here, never leave anywhere without physical copies of all of your scans and reports. I just had to fight that one leaving the hospital yesterday for a flare up. You must be your own best advocate and then find a doctor you feel good about. 

    I was diagnosed in 2007, but had to move away from my amazing neurologist. I had a flare up a couple of months ago that included entire right sided numbness and went to a new neurologist in my new town. It was AWFUL. He and the radiologist missed a large lesion on my brain. Then I had to sit in his office and have him tell me, "great news, I don't think you have MS at all!  So do you have any further questions?", while showing me out of his office. Umm, yeah, I had questions. What about my symptoms?!?!  He just got completely offended that I had the nerve to have symptoms after he told me I was fine. He actually said, "this is good news, I don't understand why you're upset, what, did you want to have MS?"

    A DOCTOR said that to me OUT LOUD?!?!?  I ended up making a 1200 mile trip to go back to my old neurologist. He immediately noticed the missed evidence of lesions on my MRI (important to keep copies;-) and immediately started treating with steroids. 

    Unfortunately, it doesn't seem to matter how far you are into this process, some people just don't get it. I've had people telling me that I should do some mind over matter holistic type treatment, and if I ignore it maybe it will go away, and "oh, I didn't think scoliosis was that serious at all?" -yeah, thanks but I don't have scoliosis. The thing is, a lot of people don't know anything about MS...apparently even some doctors. It gets exhausting when you feel like you have to defend yourself all the time. All you can do is keep your good support system close, know you're not crazy, know your body and listen to it, and for the love of god go doctor shopping. 

    I really hope the best for you!
  • DaniAnn
    Wow, that's aweful! And funny in a very sad kind of way... sometimes you have laugh to keep from crying, right? Thank you so much for sharing. My PCP told me she was sure I didn't have MS (because I don't have eye symptoms) and asked what my concern was. I said "My concern is my symptoms. My concern is that I'm sick!" She just stared at me.  I guess it really makes a big difference which doctor you end up with. *sigh
  • capitolcarol
    Yes, you definitely need another neurologist.  Usually, the first neurologist or the PCP misdiagnosis and that can go on for years.  Don't let that happen.  Please see another neurologist.  If you already have lesions and symptoms, you should be getting some drug therapy treatment.  Please get back to us and let us know how things are going.
  • DaniAnn
    Hello All,

    so a quick update.  I finally got them to do another MRI of my brain, with contrast this time.  The results were exactly the same as 5 months ago...only a few tiny, non-specific lesions.  I dug up some old records and it turns out the largest lesion has been there since 2003.  So it's looking a lot less like MS. 

    I still have symptoms and I still have questions.  Questions like "Well what is it then!?"  And last week I had a fall while on the medical center campus.  They took me straight in to see my primary care doc and she told me it was anxiety because (and I quote) "You think there's something wrong with you and that the doctors are too stupid to figure it out. But there's nothing wrong with you." Then she wished me a good day and stormed off... *sigh.

    So, obviously, I have picked a different primary doc. And I have a referral to UCSF to see a neuro specialist.  Fingers crossed that this one will be able to figure it out!
  • maria1
    So now you know, even some doctors are too lazy to think.
  • DaniAnn
    So today I finally got a diagnosis.... the verdict is Myasthenia Gravis!  I'm happy to finally have a name for my problem and a good neurologist who will actually treat me.  I'm nerous about the next steps, but hopeful.  Thank you all for being here with me on this crazy journey.  I can't tell you how much your support and validation of my frustrations has meant.
  • spookyghost
    Hello! I found this while patrolling for people I can relate to and I know this response is VERY late. I'm 18 and I am extremely sick, and my doctors literally do. not. care. I've seen doctors who have called ambulances after examining me because they thought I had a FREAKING BRAIN TUMOR. And after scans proving I didn't have a brain tumor, the question remained. What the bleep is wrong with me then?? It's as if they don't want to do their jobs. I've had blood work done and had to push for everything myself as if these people haven't been to medical school or something. They've ruled out everything except for MS which they are giving me such a hard time about and saying "You probably don't have it." Well? There's nothing left! My quality of life has deteriorated so much and I never received care for my symptoms of that supposed "brain tumour". Been in pain every day for literally six years now, I'm in horrible condition and even as I vomit and uncontrollably gush blood from my nose right in front of these so called medical professionals they maintain that this is all in my head. Wow! Some strong will power I have then! lol. Again, I'm only 18. I can't do what my friends can, I have migraines once a week and faint constantly, my spine is in so much pain that it makes me vomit and I collapse after a few flights of stairs. I can't feel my right leg or arm sometimes which on it's own causes me to collapse suddenly. I'm not obese or even overweight at all, nothing else to explain anything. I used to be a star athlete and now I can hardly walk my dog. I have to justify everything I feel by keeping journals of my symptoms, and for the first 2 years it was tedious but plausible. 4 years later and I go blind from standing up and not a single doctor cares. Anyway, best of luck to you and all who know this pain.  Just want you to know you're not alone while also letting off some of my own steam. 

  • DaniAnn
    I haven't logged into this site for a while now, but thought I'd check back in.  SpookyGhost, I'm sorry for what you are going through.  But if my experience has taught me anything, it's that you can't give up.   You are your best advocate.  You know your body better than any professional could.  Keep going.  Keep pushing until you get your answer.