CFS/ME AND LESIONS ON MY BRAIN...

Discussion in 'Fibromyalgia Main Forum' started by hazygal, Jun 14, 2003.

  1. hazygal

    hazygal New Member

    So it supposedly isn't MS from the MRI's and the spinal tap! I've got bad symptoms of CFS and I'm wondering if this is autoimmune something or what! I am soooooo tired of the search, it's been four years now.... Now i feel like the village idiot at our church... Are the lesions related? If not, when I read the article of Kathleen titled "THE THIEF OF MANY LIVES" it stated, "perhaps your not aware, but i've placed some lesions on your brain" to that effect, so does anyone have lesions on the brain? Can anyone help me with this question before I forget why i'm writing this? Just kidding.....
  2. Achy-shaky

    Achy-shaky New Member

    Per my Rheumy, there has been research that has shown that many with FMS have lesions however you wouldn't know it unless you got one of the newer MRI brain scans that cost an arm & a leg (probably not covered by ins). He says eventually we will be able to take this test to prove we have it & maybe be able to get SSD easier. Not sure this applies to CFS. Someone else may know more.
  3. hazygal

    hazygal New Member

    This is still such a mystery isn't it? Thankyou all for your response and ones in advance as well... The one that wrote the long letter, well, I really appreciate the time you took to write it.. tx all of u....
  4. carolweedwad

    carolweedwad New Member

    dear hazygal
    back in 2000 i was having vibrations in my body, they did an MRI and found 15 to 20 white matter lesions, then did a spinal tap that was negative. I was sent to a neurologist who said it might be quiescent MS and to wait and see. I continued to have fatigue, pain etc and have had fibro since 1982. In 2002, I waited 5 months to see another neurologist for a second opinion, he was an MS specialist who took another MRI and found the same 15 to 20 white matter lesions....but because they hadn't increased in number (one of the signs of MS) and with my fatigue, cognitive problems, memory problems etc., he said that I had small vessel disease which mimicks MS. Now they are trying blood thinners and cholesterol meds to help the small vessel disease. The blood thinner coumadin threw me into migraines so they are trying small doses of Pletal which works on the sticky platelets. The lesions I was told are small infarcts(strokes) that eventually become holes in the blood vessels after the dried blood has been carried away by the body. These little areas cause the same kinds of problems that the demylination in MS. This comes from Dr. Thomas Scott (Director, Allegheny MS Treatment Center)who's the head MS guy here in Pittsburgh, PA. He says, It apppears to be the syndrome of Fibromyalgia in a patient with small vessel disease. So, I have layers of disease processes causing the same kinds of symptoms which causes me major fatigue, pain, depression, cognitive problems. I suspect that there are alot of you out there who have this layering effect. I've had fibromyalgia since 1982 and worked for 20 years with fatigue. This additional fatigue from small vessel and depression has brought me to a crawl and I have filed for disability.

    Have your cholesterol checked, MS is bad but this small vessel stuff can kill you a lot quicker than MS will.
  5. hazygal

    hazygal New Member

    Thankyou for writing me back, You've given me another question to ask my Neuro... I thankyou, it seems it may be possible... I wonder why my other Neuro didn't think to tell me she was suspecting this or not... Did you take anything for it? How do you know this will kill you, and how will it kill you? Don't worry, i'm soooo not afriad... At least i'd have an answer... I'd like to keep in contact with you if that is okay????? Oh, I do have high colesteral.
  6. kellbear

    kellbear New Member

    During my diagnostic process for CFS My PCP sent me in for an MRI to rule out MS. Well it did show 7 lesions over the left side of my brain. When I went to the Neurologist he said that it is not MS "yet" because the lesions are over a part of the brain he called the "no-where land", evidently a part of the brain we don't use. I don't know about you, but I don't consider any part of my brain "NO-Where Land". Anyhoo, he did state that he read an article from his head neuro that said more and more CFIDS patients end up with these mysterious lesions on their brain. I totally think this is a neuro or nervous system disorder because I can actually "feel" that my brain is sick somehow. Like it get over heated or something.
  7. jann1033

    jann1033 New Member

    sorry i'm new here and confused by some of the requirements

    I wanted to ask about someone who said the Dr. said no MS "yet" as I got the same response 15 yrs ago post MRI. does that mean they have not ruled out ms or what. never got a straight answere, lost my insurance and my old dr. ( no longer practicing) and can't find a Dr. who has any concept of CFS.....(none listed in the good dr. list for my area either). PS is there a spell check with this anywhere??? i never know if I spell something wrong or not as it all looks wrong to me!

    I also think it is in the brain and maybe autoimmune because every single system in my body has been affected at one time or another. also think it is getting worse cause somethings never get better( adding to the list of these daily it seems)
    [This Message was Edited on 06/19/2003]
  8. Achy-shaky

    Achy-shaky New Member

    Layinglow – thanks for the great info which I know I’ve read before but as usual didn’t retain it – I’d love to take to my doctor - is there a book I can quote on this info?

    Carolweedwad – I’m getting a lot of what I’d call vibrations in legs and arms which I thought was part of restless leg syndrome spreading but now I’d wondering if I should ask for another MRI – did one 2 years ago that was normal. My cholesterol is high too but since I’m overweight & don’t get a lot of exercise I just figured it was that but I swear my blood is so thick it slows to a crawl at night and it scares me. I do take CQ-10 which seems to help some. Do you know if the small vessel disease also cause heart arrhythmias?

    Kellbear – Yikes, I agree…how can they say that! I also can feel my brain is somehow sick because I get hot spots in frontal & temple areas but yet my temperature is normal – I know it’s deprived of oxygen – I get tinglings all over it however since I’ve been doing breathing exercises that helps some.

    Jann – Welcome to our world & I understand your confusion. This is the right place to find a good doctor – post a topic that you are looking for one and where you live - you should get some suggestions.

    For All - A tip for spell checking tip that works for me – Type your responses in your word processor first while keeping the message board open. You can do spell check & also it’s great to be able to go back & forth between the message board and word – then when done typing just copy the text into the response box. Another plus is you can keep the word file for future reference is wanted.

    Blessings to all,
    Shaky
  9. ocean1

    ocean1 New Member

    Hi all,

    I am very new to this board. I have an uncommon nerve entrapment in my ankles called tarsal tunnel syndrome. It's unbearably painful. I developed many other symptoms I also went under a battery of tests. MRI of my brain detected 6 small lesions. I went to an two neuros. One an MS specialist. He felt that the lesions looked more similar to someone with TIAs (mini-strokes). I had a mini stroke when I was 18 so that became a strong possibility. We all get lesions as we get older, but itis unusual for younger folks say under 55 to have them. Lesions can also occur because of alcoholism, cocaine abuse and accidetal traumas to the head. I do believe the lesions have interfered with my ability to function. I am not formally dx with fibro but am being treated for it....the treatment for TTS is the same for Fibro.

    I have gone from a wheel chair to my feet again. MS was ruled out for now. Any person has the ability to develop MS, it does sometimes manifest itself in different ways. That is probably why the docs give an opinion that leaves the window open. My brother has MS. I walked in the MS walk this spring. I would be happy to answer any questions on the topic of MS,I know a fair amount about it, unfortunatly.

    ocean1
  10. carolweedwad

    carolweedwad New Member

    dear Achy-Shaky

    I would get another MRI.
    They may or may not find lesions.
    Get your cholesterol down with meds asap. The small vessels in the brain get plugged up and you can stroke out of this world. I don't know about heart arrhythmias but I'd say it's a good bet with your arteries clogged etc.
  11. carolweedwad

    carolweedwad New Member

    dear hazygal
    For the small vessel disease they give me blood thinners, coumadin gave me migraines so I'm now on Pletal and Zorcor for high cholesterol. It can kill you because these vessels are tiny like the head of an pen and when they get plugged up you can have a stroke....die.....be paralized etc. You can e-mail me anytime carolweedwad@juno.com
  12. hazygal

    hazygal New Member

    carolweedwad: What I don't get is now that i've had two MRI's showing spots, all the fatigue, congnitive problems, and high cholesteral is why, why for one did they not even mention small vessel disease?

    tx Cathy
  13. carolweedwad

    carolweedwad New Member

    dear hazygal...........the first neurologist I went to said it may be quiescent MS. They wouldn't know unti time passed to see if more lesions came. Two years passed and I was not impressed with the regular Neurologist so I call the National Center for MS to see who their head guy was here in Pittsburgh. I figured if I had MS, being a specialist in that area, he would know. I waited 5 months to get into see him and he took one look at the old MRI and the new MRI and there were no new lesions. I'm not sure all neurologists are as experienced in picking up the differences. There was no doubt in his mind that it was small vessel that was mimicking MS down to all the same symptoms, fatigue, cognitive and memory problems, numbness and tingling...also a lot like Fibromyalgia. That is what I was saying about layers of the same symptoms coming from different diseases. I wouldn't say that he's 100% accurate. We won't know that until years down the line. If I turn up with 50 white mater lesions on my next MRI I'll bet the diagnosis changes back to possible MS and they will want to do another spinal tap to see if I have any of the demylenation in my spinal fluid that happens in MS. Hope this helps. Take care of yourself!
  14. carolweedwad

    carolweedwad New Member

    dear hazygal

    thought I'd let you know I changed my e-mail address to
    cbweedwad@MSN.com......in case you have any more questions or if I can help....take care of yourself..carolweedwad
  15. hazygal

    hazygal New Member

    Hi Carolweedwad: Thankyou for writing and offering your time.

    I mentioned small vessel disease (and he also knew about high cholesterol being 238) and said, but you don't have diabetes, or.... or... And he said you've got cholesteral but it isn't with anyother disease. Okay, whatever... He is suspecting i've got FMS and has referred me to a Rhuemy. I've got all sorts of more blood test results to get back, only if they are bad i suppose. Being tested for Lupus again. My knees were hyperreflexive and he wants to do another MRI on not only my head but my neck. He said it is very abnormal to have these hyper reflexes and my whole body sort of jumps when he does that too. I think it's MS though... I'll let you know of anything... thankyou

    Hazygal
  16. sujay

    sujay New Member

    YES, YES, YES!

    I see these ALL THE TIME, but other doctors don't seem to take it seriously if they can't diagnose MS. However, one of the internists in my county understands, and he's started sending patients to me, including his MS patients, to evaluate for problems with HYPERCOAGULATION. Look it up on this site's search engine.

    I'm so glad you've got a doctor who recognizes the importance of looking into this. Show him a copy of Berg's article on CFS as a variant of Anti-phospholipid Antibody Syndrome. (It should be in the archives, or you can search the WWW.) I am convinced that this holds the key to understanding and treating this disease.

    Did you know that the trigger points of FM have also been shown to have reduced blood flow? Someone else on this thread mentioned that 80% of CFS patients have demonstrable reduced blood flow to the brain. Doesn't that support my thesis that it's got something to do with hypercoagulation or "sticky blood"? Look into it and let me know what you think. Better yet, SEE WHAT YOUR DOCTOR THINKS.

    Good luck and best wishes,
    Sujay
  17. carolweedwad

    carolweedwad New Member

    dear hazygal
    I also had an MRI of the cervical......you can get MS in the brain stem as well as in the brain.....i think that may be a reason for the cervical MRI......i'm not sure but based on what happened in my case I just put the bits and pieces together.........they may want to do another spinal tap but i found out from the MS research that 5 to 7 % of MS patients do not show the dymelyniation in the spinal tap.......i guess it can take a long time to show up in the spinal fluid.....take care.....weedwad
  18. hazygal

    hazygal New Member

    Hi carolweedwad:

    Thankyou for your info. I'd like to ask you what you think of the doc. not responding too well to my mentioning a "small vessle disease." He knows i've got high cholesterol. He told me that my lesions weren't indicative of MS because of the shape. But hey, they've been known to be totally wrong before right? Guess what? I really don't mind if it was MS; at least i'd know what it was and people around me would understand me better and the search would be over. I could even get on medication to help it. But at this juncture, this is driving me crazy! Someone on here thought I may have "sticky-blood" or Hypercoagulation, one symptom is the spastic knees... What do you think? Tx Hazygal
  19. hazygal

    hazygal New Member

    I better write that down before i forget... That was so sweet.... thanks again... Hazygal
  20. carolweedwad

    carolweedwad New Member

    dear hazygal
    Having lesion on the brain is just the beginning of a POSSIBLE diagnosis.....very hard and time consuming to get to a diagnosis of MS unless you have the bad, fast crippling kind. I got a lot of free info from the National MS society that helped me make sense of things when they were thinking i may have ms.

    they have to let time pass because in the beginnning stages they just can't pin it down because there are so many variables.

    they moved onto small vessel disease because it mimics ms..and the neurologist who specializes in ms thought it was not ms because there were no new lesions after 2 years on the new mri. This went along with my high cholerterol so they decided to put me on meds to lower my cholesterol and another drug to reduce the stickiness. This does nto mean that another 2 years down the line i won't have 50 lesions and they decide i have ms after all.In the mean time my cholesterol and blood will get better and that will help in other ways......No two doctors are up to date on anyone subject. I know you want to know something but even if they give you something it will be tentative probably. Try to get your doctor to send you to specialists that's my best advice. I think the blood angle is worth following up. Just hang in there.....and keep learning you have got to do as much research as you can and that will help........take care