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currently being checked for Chiari

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carolinagirl1
carolinagirl1

I was diagnosed with MS 10 YRSago, now im being told I don't have MS, dont fit the criteria. Ive had horrible chronic fatigue, pain in my legs, feet and ankles for 10 years. I have bladder & bowel problems, cognitive changes that affect me daily. Not too many headaches but occasional bad pain in my right eye. One radiologist noted on a mri a downward tonsil on my brain mri, so now my current neurologist is checking me for Chiari Malformation. I dont know what to think of doctors anymore. My life has totally changed since beginning symptoms in 2002. All I know is im not the same and something is horribly wrong with my body. Any feedback appreciated.

0 likes, 7 replies

7 Replies

  • hayleybell
    hayleybell carolinagirl1

    Posted

    Bless you! Sounds like you are really going through it!!.....your symptoms don't sound like chiari textbook, but some may be related?? .....Have you had your eyes tested? I get terrible pressure type pain in my eyes with my chiari sometimes, as if someone is squeezing them! (Horrid) I have my eyes tested regularly to rule other things out too!

    Pain can radiate with some people into neck and arms, not often legs and feet. Not sure about bowel and bladder symptoms? Do you have a lot of back pain too??

    Have you had a full spinal

    Mri too to rule out any spinal/nerve problems?

    I really hope you get a proper diagnosis soon so you can get some relief. It is awful when clearly something is effecting you and your quality of life but no one can diagnose & treat. I do sympathise......

    What are your cognitive symptoms you mentioned?

    Hope my reply is slightly helpful.....take care now......

    Hayley

    • carolinagirl1
      carolinagirl1 hayleybell

      Posted

      It is horrible to live in such pain every single day and the fatigue , im slow in the morning and wore iut by the time im ready to fsce the world. My cognitive decline includes memory, prioritizing, very forgetful, cant handle alot of information, anxious or agitated easily. I do hsve lower back pain and neck pain and shoulders. But I have degeneration in both my neck and back so I figured the neck pain is frim thst. My lower back mri has degeneration but doctors tell me the pain I hace is not coming from my back. 've had a thoracic mri, its fine, eyes are fine. I have brain lesions but neurologist said they're not the shape of MS lesions. I never feel good. I just want an answer and correct treatment would be nice.
    • anna78041
      anna78041 carolinagirl1

      Posted

      Hi bless you it's horrible when you know something is wrong but they just can't find out what it is!!

      im covered in arthritis but it took me ages to get diagnosed with it, I kept being told nothing was wrong even though I couldn't walk. It was such a relief when they found out what it was & soon as the medication started working. So can understand how frustrated you must be feeling. 

      My 15 yr old daughter has got her spine Mri tomorrow I think I'm more nervous than her. Good luck with it hope they find out what is wrong very soon. Anna x

    • hayleybell
      hayleybell carolinagirl1

      Posted

      It certainly sounds like you have a lot of things going on. I Do hope you get a diagnosis soon so that treatment can start promptly and that you get to feel better.

      Sometimes second opinions can be beneficial. Get some fresh eyes on diagnosing you!

      Good luck....let us know how you get on

    • carolinagirl1
      carolinagirl1 hayleybell

      Posted

      That's the thibg, ive had 2 opinions. Now when I get in the MS board everyone is like "Oh yeah, me too" as far as symptoms, etc. The whole thing is bizzare. I was originally diagnoused at The M.S. Center of Atlanta, USA. Then found a neurologist in my home town, saw him for almost 4 yrs, chsnged to a different, suppossively a better neurologist , for 6 yrs, then she downsized her patients and sent to a different neurologist in the same bldg. The new neurologist said I didn't have it, I did not agree and got a second opionion and he ssys the same thing. Its crazy. I have symptoms of MS but they cant find anything neurologically wrong with me. Chiari can mimic MS but seems I dont completely fit thst either. Ive been tested for EVERYTHING. . Seems to me Somebody could figure tjis out. I hsve to take oxycotin everyday and other medicinesjust to function. I have lost trust, confidence in doctors.
    • hayleybell
      hayleybell carolinagirl1

      Posted

      I am not surprised you have lost trust in the doctors in your care, it is ridiculous! You are clearly really suffering! I wish I could be of more help to you.....last resort, but you have probably been, is a specialist pain clinic..... I hope you get to the bottom of it all soon. I wish you all the best.

    • carolinagirl1
      carolinagirl1 hayleybell

      Posted

      Ive been under pain management care for 7 yrs, but im so tired of tskinh sll these medicines, the pain medication has already damaged my stomach. I now have Gastroparesis ( slow emptying of stomach). Im trying to get a spinal cord implant for chronic pain, I know all these pills cant be good for my stomach. Just seems simple to me why they cant figure this out with today's technology. Im in bed still this morning. Legs feels like they're being crushed, its very painful and now my hands are beginning to hurt
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