HELP! ! !

Discussion in 'Fibromyalgia Main Forum' started by mamafrey, Jul 2, 2003.

  1. mamafrey

    mamafrey New Member

    I haven't posted for awhile, last fall i started developing other symptoms. Vertigo, nausea, total numbness on the left side, burning in the head and lower spine. At times i have spells where i am totally messed up like i am drunk. My fibro dr. thought i was in the early stages of MS. He stated that i was having neurological symptoms on top of the FMS. Had a few spells over the winter. In late Feb. they started up again. Same symptoms, only my vision plays tricks on me some days, so i went to a neurologist - ran an MRI - nothing showed except one little spot - said that is common. This neurologist said it was the FMS. My Fibro dr. ran an evoke response on my spine, it came back abnormal. The neurologist said he had never heard of such a test. So i was in limbo land. Went to another neurologist - had 3 appt. had all the blood work, several other test, they came to the conclusion it is sensory neuropathy in the small fibers. Told me there isn't anything more they can do for me. Told me to keep going to my Fibro dr. to get my neurotin which i have been on since the middle of march. I am now up to 800 (4 x day). It isn't helping. I have backed down to twice a day. Going to keep taking them till i finish them off because they are so expensive. My main concern is there are days i go into these spells where my body goes totally numb, or i feel drunk and i can't drive. Thats alright except i have 3 small children and they do have school functions, or i have to go get groceries, i don't even trust myself to drive further than 10 miles cause i can never really predict when these spells will hit. Yesterday went to the store and my arms went weak again like they where going to fall off then went into the drunk feeling state again. My throat and tongue are even starting to go numb at times. Explained all this to the neurologist - crying at two appts. Told them i can handle this but give me an answer, i have these children to raise and half the time i can't even be a good mother cause i am in so much pain i can't get out of bed. Sorry this is so long, but i don't know if this is all Fibro, since it is progressing, or if it is neurological. Both neurologist don't think so. Thought about going to Mayos but we are so stacked up on medical bills that i hate to waste my money and go further in debt if they can't tell me anything. Just considering going back to my fibro dr. These other drs. look at u like its all in your head. The neurologist i talked earlier this week, explained to her about the numbness starting in my throat and tongue, she said well just keep taking the neurotin, (knowing it isn't working) and to just hang in there. I am so confused and don't know what to do. Does anyone else have the total body numbness, including the head? ANY INPUT or ADVICE would be soooooooo appreciated. thank you and everyone have a happy 4th of July. MAMAFREY
  2. kerrymygirl

    kerrymygirl New Member

    I am so so sorry I know how frightening it can be. Doe`s the numbness stay that way or wax and wane? I do get alot of areas of numbness. I area stays others move around.I am on neurontin and find actually the lower dose helps 400 to 800 the most a day. Previously I could not even finish a sentence. But we are all diff.

    About the mayo if you are fairly sure it is not from fm/cfids etc. Then it maybe ok to go. So many are disappointed due to there lack of knowledge of these disorders. Come back angry and lots of med bills. Only to have been treated lousy so to speak.

    Have they looked into lyme? That is also diff. and expensive since there are only 3 labs now that really know how to detect the sphirochete and it`s damage. I found out I too have lyme and neuro lyme, which chronic lyme pts. often have, do suffer alot of these symptoms. Very controversial of how to treat. So hope you do not have it. It is a distructive disease, with much cover-up. Lyme has been found in all 49 states and you do not even know sometimes if you have been bit.

    Do you have help with the kids? I know when I still had mine at home how tuff it was. I did not even know what was wrong 10yrs. of misdiagnosis.

    I really hope you are dealing with nothing more than you already have, that is enough.

    Check out lyme-net our symptoms cross over alot.

    Take Care & Hugggggs(Sounds like you need it)
  3. franners

    franners New Member

    I hate the tongue thing!!!!!!!! Or When my nose is numb.. When my tongue is numb I have to stop mid sentence cause I sound so funny if I don't, so people think I am losing it..
    AS for the neurontin, I take alot, (3600 mg a day) and I am on my way to 6400mg (if I have to).. Maybe you need your neurontin increased..Don't give up on it and see about getting on wellbutrin with it..
    My friend told me (another one who attempted suicide. Bipolar.) That if you are dependant on these drugs (meaning you have to take them forever) you can get a medical card. she said she got one because of here antidepressants.. And she is getting her ssd on the first attempt d/t bipolar.. Go figure..But anyway, that might be a financial assist for you with your drugs.. My doc trusts me enough to perscribe the highest dose allowed cause what is left on my insurance considers it one script so I paid $35 for 7 large bottles 540 pills.
    Check all your resourses for help.. Call jobs and family services, if they can't help they know who can..
    I can't drive alot either and that really gets to me. I tried to ride a bike the other evening cause I use to do that all the time well, right down I went.. I do understand.. But please don't just stop your meds, that will screw you up so bad and the only end result will be more pain.. I will worry about you all day..
    My heart to yours
    God bless