What type of Neurological Exams have you had? Same symptoms?

Discussion in 'Fibromyalgia Main Forum' started by IndianPrincess, Oct 3, 2006.

  1. IndianPrincess

    IndianPrincess New Member

    I am having trouble getting neurologists at Cleveland Metro hospital to listen and run tests.

    I get disoriented which is scarey when I'm out alone. I know where I am but have difficulty communicating when these spells come over me. I've lost things too like personal belongings, money, bus pass and disability ID-everything I need to get home.

    I also lose my coordination and have tingling in my legs and arms.

    Any ideas?

    Cindy

  2. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I want to say first off, that I totally admire you and all your efforts for awareness and your incredible moxy.

    Your symptoms could be garden variety CFS though. I used to call those "episodes" and I've certainly had them too. these could come on when you are out because you've overdone and then adrenaline kicks in to try and compensate and you get those symptoms.

    That would be the easier answer, because you could learn better pacing and save up energy to get these excursions done w/out crashing before you get home. Takes practice and learning your warning symptoms, but its eventually doable.

    here's the tougher to deal w/ possibility. You could be chemically sensitive. I used to get exactly like you described when taking the bus and going in bad traffic fumes. Diesel is the worst for me. I'd fall asleep on the bus, miss my stop, get my pass stamped to backtrack, do it again, get off at the wrong stop. I finally had to vow not to take the bus anymore.

    That was huge, and very hard to find new ways to get around. It took me years to run into the resource, but a woman's shelter actually provided free medical rides in Ottawa, partly funded by the govt. I became friends w/ the driver and we would sneek in grocery shopping and stuff where we could.

    Only you can put all your clues together and figure out what's most likely. It can take awhile to figure out if you are chemically sensitive and then to figure out exactly the worst triggers, because the symptoms are diverse, bizarre and different for everyone. I hope its not MCS, but if it is, you will cut down lots of symptom load by figuring it out and planning around it.


    Jeanne
  3. suz45

    suz45 New Member

    Indianprincess:

    I have had a swizure disorder since age 13, since I had a serious head injury, at first my "spells" were brief with little bit of disorientation and some memory problems. As i got older they became worse I thought I was nuts.... However, my younger sister noticed the spells and strted bugging my parents about the weird stuff I was doing.

    Anyways, I finally saw a number of Neuors and had batteries of tests whuch confimed I had partial complex seizures which are difficult to describe as well as deal with. I have been "major" seizure free since 1991. However, you need to keep track of any unuaual symptoms.. Is tinglind, confusion, strange smells, weakness, feeling pf unreality, inabilty to talk. If you can and have someone close to you have them help you journal your symptoms. Bring it and your support person to the doctor this can make a world of difference, as they might be able to describe something you can;t or don;t rememeber. Try to do a timeline and frequency of spells.

    I'm not saying you have seizues , but if you do you want to get treatment asap. Also even if its something else, you need to find out what.

    There are good neuros out there, just keep knocking. If you need help I know the Nat Epilepsy foundation in VA gives out referral names for doctors.

    Keep posted.

    Suz45
  4. twitcher

    twitcher New Member

    I have numbness, tingling, twitching, burning, blurred vision, muscle pain, and much, much more. I've been to neuro's at Metro, Cleveland Clinic and elsewhere. I saw an MS specialist at CCF who said no MS. I've seen a total of 4 neuro's, had every test known to man, even a spinal tap. All tests are completely normal and all docs said I don't have MS. I saw a fibro specialist just last week who said I have "classic fibro". I had 14 of the 18 tender points. He said he didn't know however if some underlying disease is causing it. The neuro symptoms are horrible. I can handle the pain better than numbness and tingling.
  5. IndianPrincess

    IndianPrincess New Member

  6. DorothyVivian

    DorothyVivian New Member

  7. georgie0826

    georgie0826 New Member

    I have experienced this too. Sometime I have to really think of how to get home. I found that pacing myself really helps.
    I have seen several neuro. One did all the memory tests, like for alziemiers. I new I would to well on them it was 8:00 am, quiet, and I was rested. My systems show up more when I'm tired and stressed. I was also diag. ADD. Clearly he didn't know anything about Fibro
  8. suz45

    suz45 New Member

    Cindy:

    I have FM/MPS and have had a seizure disorder (complex-focal) snce age 13-14. You sound to me like you need a neuro evaluation done.

    It could be the FM or something else.

    What tests have the doctors run on you. I would think with the symptoms you are presenting with that a sleep deprived EEG is in order as well as an MRI, there are also a battery of neuropsychological tests that can often pinpoint if there is a dysfunction and where in the brain (aprox) it is coming from.

    Do you have any Auras prior to the spells such as funny smells, sights (weird colors). Are you able to communicate or do you lose time and cannot remember events.

    Keep a log of your symptoms, frequency, any where and when on your body it occurs. Are you actually uable to communicate at all (aphasia)? These could be signs of many disorders that should not be dismissed lightly.

    Bring a support person that has seen this happening with you, quite often the doctors will listen to them, particularly if you have difficulty presenting a time line of your symptoms or spells.

    My sister and husband have been ablle to tell my doctors things about my spells (seizures) that I am clueless on. Particularly as I only remember the Aura state before the seizure occurs.

    If you can't find a doctor that will listen, you can contact the National Epilepsy Foundation in Northern VA, Fairfax county for a referral.

    I'm not saying you have seizures, but they might be able to help you find a doctor willing to comb thru all these symptoms to rule out disorders.

    Hope this is helpful, Don't give up it may take more than one or two doctors to get the right answers and tx.

    In wellness,

    Suz45
  9. IndianPrincess

    IndianPrincess New Member

    Several things have happened since I initially posted this question.

    I started with a rheumy several months ago. His name is Isam Diab and I go to his Lakewood, Ohio office. I met Dr. Diab in 2004 when I participated in the Xyrem clinical trial for Fibromyalgia and sleep. He was the rheumy I saw for tender point exams as part of the trial.

    I decided to see him as my regular rheumy and he ran some tests and told me Friday that I also have Sjogrens.

    I have been told that he is very supportive of his patients in obtaining SSDI!

    He asked me what neurologic exams I had and I told him that Metro hasn't been responsive. I asked him about a Dr. Ravishankar in Middleburg Heights so he said to make the appointment and he would support me for the referral.

    I've met Dr. Ravishankar when my mom's cardiologist arranged for her to see him and I understand he is very good so since Dr. Diab also knows him personally, I feel that is a plus.

    I was referred for psychiatric at Metro by my cardiologist and PCP too!

    It will be a while before I can see a doctor but I accepted appointments with a nurse (so I can get documentation too!).

    Well, this looks to be a plus for me! The nurse grew up 16 miles north of my hometown and we know the same people. Mind you, we are in Cleveland and two and a half hours from where we grew up.

    She gets it with Fibro and knows alot of people with it. She also detests the Social Security system in refusing us when we obviously can't work so this makes me feel she will be very supportive especially with documentation in what I tell her.

    Thanks again!

    Cindy