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  • Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

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    Old 01-31-2005, 05:01 PM   #1
    SuzU
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    Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    Okay-started off six years ago with chest pain, weakness in legs and arms, clumsiness of hands, internal tremors and palpitations. Was tested for all things-ms, cardiac, thyroid, auto-immune, lupus, all negative.
    Have also had Raynaud's syndrome for most of my adult life (I'm 38 now...)
    Since then have had multiple episodes of low back pain, neck pain, various strange symptoms. Numbness in groin after going on an exercise bike-along with the numbness there were bladder symptoms, frequency, burning, but no infection and nothing structural was found to cause this. Symptoms resolved in about two months or so.
    Next had numbness of chin and face after having some dental work. Thought that the novacaine injection may have done some mild nerve damage and that it would hopefully resolve eventually. It did, but recurred from time to time and I would sometimes get a mild tooth ache in a tooth that had been root canalled. (sp?) Also intermittent chin tingling without the tooth ache.
    Next came the stomach. To er with severe, horrible abdominal pains that migrated to every part of my gut. Tested for colon cancer, appendicitis, gallbladder, ulcers, gerd, etc-again, mostly negative (hiatal hernia-IBS.)
    Next-more bladder trouble, only this time without so much the saddle numbness, more of the burning and frequency, again no infection. Always felt like my bladder was leaking, though the gyn didn't find anything again.
    These symptoms would come along and go away an average of once or twice a year, and always seemed to be aggravated when I would lift something heavy and fly in a plane.
    Now to the present. All symptoms have returned with a gusto. Facial tingling, widespread changes in sensation in different areas-face, back of neck, legs, arms. Clumsy hands, difficulty buttoning, difficulty typing. Trouble swallowing. Bladder burning, frequency. Extreme weakness in legs and less extreme in arms and shoulders. Tremors in hands,legs, arms, internal tremors, palpitations. Now drooling very mildly out of the corners of my mouth. Occasional blurred vision-eyeballs sometimes feel like they are shaking. Once again-neuro exam, mri of brain (both negative except for mildly brisk reflexes,) mri of spine shows a small syrinx (which may or may not contribute to symptoms below the level of the injury c6-7)
    Three neurologists have said MS is unlikely, which is nice, but what then is this? One neuro says there are too many symptoms for it to be MS. He suggested it could be fibro. They have also told me that it is anxiety. Yes, I always drool and wet myself when I get anxious.
    Does anyone with fibromyalgia have these symptoms?
    Oh-I forgot to say-I'm always in pain, neck, back, chest, hips, knees.
    I'm most concerned about the tingling, weakness and tremors.
    Sorry for the long post. I just wanted to pick your brains.

    Thanks in advance for any hope/help you can give me.

     
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    Old 01-31-2005, 07:28 PM   #2
    thisstarr
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    Quote:
    Originally Posted by SuzU
    Okay-started off six years ago with chest pain, weakness in legs and arms, clumsiness of hands, internal tremors and palpitations. Was tested for all things-ms, cardiac, thyroid, auto-immune, lupus, all negative.
    Have also had Raynaud's syndrome for most of my adult life (I'm 38 now...)
    Since then have had multiple episodes of low back pain, neck pain, various strange symptoms. Numbness in groin after going on an exercise bike-along with the numbness there were bladder symptoms, frequency, burning, but no infection and nothing structural was found to cause this. Symptoms resolved in about two months or so.
    Next had numbness of chin and face after having some dental work. Thought that the novacaine injection may have done some mild nerve damage and that it would hopefully resolve eventually. It did, but recurred from time to time and I would sometimes get a mild tooth ache in a tooth that had been root canalled. (sp?) Also intermittent chin tingling without the tooth ache.
    Next came the stomach. To er with severe, horrible abdominal pains that migrated to every part of my gut. Tested for colon cancer, appendicitis, gallbladder, ulcers, gerd, etc-again, mostly negative (hiatal hernia-IBS.)
    Next-more bladder trouble, only this time without so much the saddle numbness, more of the burning and frequency, again no infection. Always felt like my bladder was leaking, though the gyn didn't find anything again.
    These symptoms would come along and go away an average of once or twice a year, and always seemed to be aggravated when I would lift something heavy and fly in a plane.
    Now to the present. All symptoms have returned with a gusto. Facial tingling, widespread changes in sensation in different areas-face, back of neck, legs, arms. Clumsy hands, difficulty buttoning, difficulty typing. Trouble swallowing. Bladder burning, frequency. Extreme weakness in legs and less extreme in arms and shoulders. Tremors in hands,legs, arms, internal tremors, palpitations. Now drooling very mildly out of the corners of my mouth. Occasional blurred vision-eyeballs sometimes feel like they are shaking. Once again-neuro exam, mri of brain (both negative except for mildly brisk reflexes,) mri of spine shows a small syrinx (which may or may not contribute to symptoms below the level of the injury c6-7)
    Three neurologists have said MS is unlikely, which is nice, but what then is this? One neuro says there are too many symptoms for it to be MS. He suggested it could be fibro. They have also told me that it is anxiety. Yes, I always drool and wet myself when I get anxious.
    Does anyone with fibromyalgia have these symptoms?
    Oh-I forgot to say-I'm always in pain, neck, back, chest, hips, knees.
    I'm most concerned about the tingling, weakness and tremors.
    Sorry for the long post. I just wanted to pick your brains.

    Thanks in advance for any hope/help you can give me.

    Hi There

    I could tell the whole story but it would take up to much space on here so I will try to explain the best I can, I am in alot of pain right now and cant think right so I hope this makes since!
    I have been in two car accidents I was in the hospital for severe stomach pains for over 2 months I had all the testing done you can think of. I also have hiatal hernia & IBS. I also had chest pains that were unbearable and palpitations, it was very very scary! I had to go to the ER twice for it, I thought I was having a heart attack and I am only 25! I have the same type of bladder problems as you, I pretty much have all that you have but a few things. You need to have a doctor check your body for for spots to see if it is FMS. IF you have 11 of 18 then you fall into having FMS. The pain sucks and is unbearable, I wouldnt say you dont have it, because you could! but you need to find a doctor that knows FM to help you.
    Good luck! Hope this helps! I know it can get hard and you feel like your going to lose it, I feel like that all the time So I understand!

    HUGS,
    STARR
    ~Here to pain free days~

     
    Old 02-01-2005, 01:54 PM   #3
    apriltones
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    hi all, im still waiting for mri. i think it could be fibro with me but then it could be other stuff too. i have tingling on my vaginal area, its frustrating, and sometimes itching. i have got group b strep which suppose to show no symptoms. it cant be that any way as i get tingling on my back. love april. we all understand

     
    Old 02-01-2005, 02:36 PM   #4
    SuzU
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    Hi everyone,
    Thanks for responding and for being so encouraging. My most problematic symptoms are neurologic; weakness, clumsiness, fine motor problems with my hands, tingling, TREMORS (I hate these the most) etc, not pain. I have had pain most of my adult life, so perhaps I'm just used to it, I don't know, but I could live with the pain if the rest of me would stop deteriorating.
    I got myself a tempurpedic mattress which helps me sleep much better at night-before that the back and hip pain would keep me up all night.
    Anyway, tomorrow I go for spinal tap-one more step toward eliminating the MS diagnosis (I can only hope it is negative...)
    Blessings to you all.

     
    Old 02-02-2005, 05:29 AM   #5
    hdnighttrain
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    Hi Guys, My browser wouldn't let me into page 2 of my original post either. Suzu, I can totally sympathise with EVERYTHING you have said, my symptoms are basically all neurological as well. The tingling, twitching, numbness, weakness, shaking, shivering, are ALL big symptoms for me, more so than any pain, although I do and have had pain for a long time in various parts of my body, but I like you have become accustomed to it and feel my threshold for pain is higher than some peoples. These syptoms are very distracting and scary to say the least. My arms feel so weak now that it is a wonder I am typing this and also clumsy, puttting the cap on the toothpaste is like a major science project for me. I have intolerance to any activity, like for instance my dr suggested I start yoga, so I did one session of it 2 days ago on the beginner level and feel like my muscles are all bunched up and sore today. My vision scares me too, it is like I am looking through static most of the time, I also have alot of blurring, shimmering, flickering etc. I have a form of migraine that they say is giving me all of those symptoms but I am skeptical about that. So you see, you dear, are not alone, I would be happy to swap misery with you anytime you need an ear or a shoulder to lean on. I am 34 and too too young to be this way. All the things I used to enjoy are no longer enjoyable to me. On another note, you didn't mention if you have any neck problems, someone above mentioned this was the cause of all of their problems, forgive me for not remembering your name!!, and I too agree this is the straw that broke the proverbial camels back for me. Since my injury I have been on a downhill spiral. The ironic thing is that my neck dosn't necessarily hurt but I do have all of the knots up there around my shoulders and neck, also sore spots over my chest. I could type until the end of the world about all of this but will let someone else have a turn. Remember this, I am here for anyone who wants to bs a while and I do say prayers for all of us every night.

    Kim

     
    Old 02-02-2005, 05:58 AM   #6
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    I really do think that your syrinx is the most likely cause of your problems.it sounds like you could also have some part of it affecting your sympathetic nervous system(just look up info on the sympathetic and see all that it is in charge of,it runs to alot of places and governs alot).Also, something that is wrong in the c spine area can also explain the facial symptoms you are having as some facial nerves actually kind of go down through the c spine area and kind of loop back up to the face.How big is your syrinx?My suggestion to you would be to go to any type of a univerity medical center(teaching hospital?)and also, research the heck out of syrinx's,and possible symptoms.the biggest help for me,when I was kind of going through the same thing you are but with what is called a cavernoma inside of my spinal cord?was to really get more in depth with symptoms as they relate to just exactly where the lesion sits in relation to the inside of your cord.By that i mean spinal nerves and spinal tracts.i was able to pinpoint alot of my exact symptoms by just finding out from my mri where this sucker sat in there.if you look at the 'slice pics on your mri, you will see a dark glob on the area where this sits.then look up spinal tracts on a good neuroanatomy site,they usually show that same type of slice pic?and you will be able to kind of determine where your syrinx sits in relation to the tracts.Once you find that out, you can really study the tract and its possible symptoms if there is some sort of affectation done to it.I know this sounds kind of complicated?bUt really, it is quite easy.i really do feel that your syrinx is the main culprit here and am quite suprised thaty non of these NSs that you have seen have made any sort of a connection.I mean geez, it sounds like they have tested for just abut everything under the sun and and cannot seem to find the cause.I was in the same situation with all these really crappy symptoms going on and the two NSs that i saw before I finally went to the university of mn,told me that there was no way that my cavernoma could be causing all the bizarre symptoms i was having.well, when I finally saw the head of neurosuregy at the U of M,he knew right away what my problem was and totally agreed with the cav as my culprit.Unfortunetly you have to really take your own healthcare into your own hands and do not let any doc try and intimidate you.Sometimes, in order to get the best care, you have to really push it.I know I had to as no one else seemed to care.i wish you luck.if you have any questions don't hesitate to ask,K?marcia
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    Old 02-02-2005, 04:03 PM   #7
    SuzU
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    Wow, you guys are awesome!
    I didn't get a chance to write back until now because I was having another piece of the MS puzzle put into place-the dreaded spinal tap.
    Thank you all so much for posting your experience, strength, and hope!
    In defense of my neurologists, they have actually all recommended follow up with a neuro-surgeon, though they have each also stated they don't think the syrinx is the prime culprit. (Actually, the latest neuro I saw did say it could be for the same reasons you are describing-some of the facial tracts do go as far down as the cervical spine. ) My neuro-surgical appt is next week, it just takes a while to get an appt.
    On one hand, I hope it IS the syrinx causing the symptoms, but on the other hand, I would not want to have surgery on my back if I could avoid it. Plus, my symptoms have waxed and waned over the years which is sort of more consistent with multiple sclerosis or fibro from what I'm told. The syrinx is extremely small. I do however have some disc bulging and thecal sac involvement which may be new for me. I have degenerative changes and arthritis in my cervical spine as well, so there is some neck stuff going on.
    Hopefully my tap will be negative and I can proceed to the next specialist and start putting my life back together. Thank you all so much for being here.
    Oh-and hdnighttrain-the prayers are the most powerful of all medicines! I must remember to pray for us too!

    Last edited by SuzU; 02-02-2005 at 04:07 PM.

     
    Old 02-05-2005, 01:41 PM   #8
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    I have been through almost every single thing you have mentioned over the last 12 years. Have been evaulated for MS twice. They say it's Fibro.
    I was told that some people tend to manifest Fibro as a more neurological disorder and others more as a muscular, chronic fatigue symptom (sore throats, etc.) syndrome. I was told I have a very neurologically oriented "classic" (Mayo Clinic) case of Fibro.

     
    Old 02-05-2005, 02:22 PM   #9
    SuzU
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    Thanks so much gimpydimp. It's comforting to know I'm not alone in this insanity.
    I'm so ready to move on with my life and put this whole thing in perspective.
    These boards have been a great comfort to me.

     
    Old 02-14-2005, 04:18 AM   #10
    thisstarr
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    I got myself a tempurpedic mattress which helps me sleep much better at night-before that the back and hip pain would keep me up all night.
    Anyway, tomorrow I go for spinal tap-one more step toward eliminating the MS diagnosis (I can only hope it is negative...)
    Blessings to you all.[/QUOTE]

    HI

    Did this bed really make a diffenence for you? I have wanted to by one so bad but wasnt sure if it is worth it I dont sleep good at all. If you dont mind can I ask how much is it well price range??

    Thanks so much!
    ~Here;s to pain Free days~

    HUGS,
    STARR

     
    Old 02-14-2005, 07:22 AM   #11
    SuzU
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    Re: Fibro? Too many symptoms to be MS says my doctor...please respond-I'm losing my mind

    It was $1500, but then we had to pay an extra $200 for the box spring because the mattress sagged on our own box spring.
    It was worth every penny for me, because I wasn't sleeping at all and as soon as I got the tempur pedic mattress I slept restfully.
    The one good thing about it is it has a 90 day money-back guarantee, so if you find that it doesn't work for you, you can return it. Most mattresses only have 30 day guarantees, and often you can't figure out if it helps in only a month's time.
    Hope this helps.

     
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