Not diagnosed

For the last 4 years I have had random test done and still today I am not diagnosed with anything other than Fibromyalgia and undetermined clotting disorder. I have continuous pain in fingers, feet, hands and joints. Three years ago I had an MRI that showed numerous spots, but none consisted with MS. My neurologist pushed me away stating it was just fibromyalgia. Well last April I had a stroke, while in the hospital they gave me another MRI. The past and recent MRI were compared and they told me I had been having small infarctions (mini strokes) for the last 3 to 4 years. Now I'm on Cumidin for the rest of my life, but I'm still in pain daily. I saw my neurologist just the other day and I mentioned again about the pain in my joints and my eye balls, he says he's never heard of such. I hope someone out there maybe can relate or know of such things happening give some advice.

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  • Hi,

    I would have thought that Central nervous system Vasculitis ( CNSV ) would have to be ruled out given your symptoms. It is very rare and difficult to diagnose. I don't know where you stay but there is a Multi Disciplinary Vaculitis and Lupus clinic at Addenbrookes Hospital in Cambridge which are excellent, they have a specific Neuro a Vasculitis clinic as well. Ask your GP for a referral and check out the Vasculitis UK website which has an excellent vasculitis route map and a wonderful help line you can phone for advice.

    Good luck and please don't be fobbed off any longer.

    Best wishes

    Keyes

  • Thank you so much Keyes.

  • Have you been tested for Hughes Syndrome (anti-phospholipid syndrome)? This causes sticky blood and increases the risk of clots.

  • Hello Paul Howard

    No I don't believe I have been tested for this, but I will surely bring it up in next visit. Thanks

  • You need to go to a good rheumatologist. If I was in England or had the means to go to England I would go to Dr. Hughes or his colleagues. The are THE specialists in antiphospholipid syndrome and if you have another autoimmune disease they will probably be able to help diagnose that as well. I have seronegative UCTD (lupus like) , which means nothing so much has been showing up in my blood, but my history is very much like lupus. These thing are hard to get diagnosed so you can't just go to any GP, you really have to get to an excellent rheumatologist, because they may have treatments to help you get better!

  • Coumadin is a real pain, as it takes away a lot of the foods we enjoyed in the past. However, surverys have revealed it's the best drug against blood clots and strokes and IS reversible. I've been on it for close to two years, and will be for life. I have the genetic Lupus factor for blood clots. My problem now is whether or not to take the flu shot. My body has a severe reaction to anything a doctor puts in it. Ihad a terrible reaction to a tetanus shot a few months ago. I'll discuss the flu shot with my hematologist today. I'd love to hear back from people with SLE, etc. who have or have not taken the flu shot. Thank you.

  • Go to a rheumatologist, they are the doctors for all that ails you. They have much more medical education than a gp, they will test your blood & urine and give you answers to all your health problems, good luck!

  • Go to a rheumatologist, they are the doctors for all that ails you. They have much more medical education than a gp, they will test your blood & urine and give you answers to all your health problems, good luck!

  • Go to a rheumatologist, they are the doctors for all that ails you. They have much more medical education than a gp, they will test your blood & urine and give you answers to all your health problems, good luck!

  • Go to a rheumatologist, they are the doctors for all that ails you. They have much more medical education than a gp, they will test your blood & urine and give you answers to all your health problems, good luck!