How many of us have had lesions on the brain??????????/

Discussion in 'Fibromyalgia Main Forum' started by twood, Mar 25, 2005.

  1. twood

    twood New Member

    Just wanted to kinda get an idea of how many have had lesions detected on the brain from an MRI.
    They found some on mine about 3 years ago and the latest Mri showed a few more.
    Also wondering how many have MS?

    Thanks- Teri
  2. RitaS

    RitaS New Member

    I discovered that I had a couple of lesions on the brain and the first neurologist seemed to think this was MS (esp. when considering the symptoms) which have changed alot since onset of CFIDS as a bout of pneumonia in 1990 and 5 years of recurring URIs (infection-prone)to what now seems a very neurological type of condition (plus neuro exam is abnormal).

    But I am going for 2nd opinion and more thorough work-up before I consider using any of those potent disease modifying meds. In my case, these brain lesions in the opinion of this much older/experienced neurologist at a major MS Clinic, do not have the same pattern (which he showed me using another scan for comparison sake) and could be more from the numerous migraines that I've had over the years (mine are those with aura / visual changes which are recently reported on the nightly news as putting one at a higher risk for stroke and are damaging to brain tissue).

    Because of certain symptoms (that could be coming from the spine), his focus has now turned to checking out the spine for lesions so I had another MRI scan of spine with enhancement, am awaiting to undergo a spinal tap in near future to check if there are enough oligoclonal bands/ certain proteins that are the breakdown products of myelin to suggest MS and then, evoked potentials.

    BTW, I have been spending a little more time on MS boards and have attended several major MS seminars (these are funded by pharm. companies)over the last couple of months and saw/ heard a lot. The meds used to treat MS are quite potent (interferons and even cancer meds) and when meds stop working, the outcome for some, can be very difficult. There are varying levels of progression/ disability in MS, but it is a very destructive illness. I am glad that this time around, this doctor is being as thorough as is possible before offering any DX and making any treatment recommendations. As a PWC underneath all the "stuff", just speaking for myself, I believe that such treatments could be quite tough to tolerate - they are quite toxic.

    Rita

  3. newmank

    newmank New Member

    Hi Teri,

    I also had an MRI with lesions or white matter, they are also called "u-bows". This has been often related to fibromyalgia. My neurologist wants to repeat MRI's every few months to see if they go away. White matter can also be related to MS or an infectuous disease process. I was recently on antibiotics for strep and felt much better, so am going to see the infectuous disease specialist for more tests. I have already tested negative for lyme and MS. At least now I can blame my scattered brain on these lesions!
    I live in Virginia in the DC area and it took me 8 months and several doctors to get an FM diagnosis. You'd think I lived in the sticks, there are so few specialists who are familiar with any of this...Hang in there and remember that attitude has the greatest impact on your life
  4. cindymindy

    cindymindy New Member

    The neurologist sent me for a MRI last year. The comment he gave me was it showed a possibility for arteries hardening and said to continue to take liptor.
    New doctor (Rheumy) sent me for another one last month. He said it didn't show any growth of my lesions. I had no idea what he was talking about! I don't have an appt. with him till next week, but I am wondering if these lesions are causing my problems. Forgetfulness, confusion,
    Lack of concentration, stumbling amd getting words mixed up. What do you all think?

    cindy
  5. foxglove9922

    foxglove9922 New Member

    Your story is exactly like mine. My first MRI revealed brain lesions and the the second one about 3 years apart revealed more. I was told it's part of this mysterious illness,,,,,,CFIDS.
  6. RitaS

    RitaS New Member

    In response to Cindymindy who wrote:

    but I am wondering if these lesions are causing my problems. Forgetfulness, confusion, Lack of concentration, stumbling amd getting words mixed up. What do you all think?

    --------

    First, I should have phrased my responses more clearly to make a couple of points, but I only posted my own situation. The first point that I should have added was lesions can result from many other things that have happened in the brain and someone else kindly pointed out - lesions have historically been also found in PWCs/ FMers.

    My other point is that if anyone is concerned about having MS then your best bet may be to meet with a neurologist who specializes in that disease (again, not necessary 100% of the time, but they will tend to pick up on the more subtle things). So, I would not jump to any conclusions or worry ahead of time until you have gone through one thorough neurological exam (imho, a 2nd opinion can be extremely helpful).

    Personally, I find there is considerable overlap in some of the symptoms in folks with MS and CFIDS/FM. Symptoms, in when/how they present, are taken into consideration while making a DX of MS, not just the MRI results, plus the neurological exam and possible a few other tests (MS can also be fairly tricky to diagnose in some people, like myself, with so much "stuff" going on). And I had noticed, ironically, that the first neurologist was quickly brushing my symptoms off as everything now being "part of MS" and the 2nd one says, not so fast. For the tingling/ numbness down the legs was actually shown to be connected to severely degenerated lumbar discs and a very narrow spinal canal - my nerve pathways are getting flattened. Now, to walk away with a misdiagnosis on those symptoms is one thing, but not to check this out and urge someone to start interferons (as quickly as possible) is another thing.

    Another thing -- from my own experience, some of these MS neurologists/ specialists can be very prejudiced against CFIDS/ FM because several years ago. When I started to have balance and sensory problems and I made the "grave mistake" of calling one of the MS specialists in my state and saying that I have been DX'd with CFIDS but was having many new symptoms and would like to be evaluated for MS, they hung up on me saying ..."oh, we don't deal with CFIDS". At these recent MS lectures that I atteneded to get a "crash course" about the disase, well here was the same MS specialist, he was one of the speakers on a panel. They all urged early DX and early intervention (but I hear the Mayo Clinic has another view on that now). So, I had submitted several written questions to the panel (about distinguishing CFIDS from MS, the overlap of symptoms, and even getting an evaluation, etc...) and these were not answered. Finally I approached one of them face to face and asked how is early DX possible with the kind of dismissive attitude against individuals with other existing conditions/ diagnosis - was it not realistic that people do often go onto have other conditions that they should get a fair evaluation for. He kind of squirmed/ did not even look me in the face and told me that people could call one of his associates at one of the other leading MS Clinics.

    Another point, what I done recently is go in with "just the symptoms" and any abnormal tests for evaluation. Even if somewhere during that appointment the "C" or "F" word comes out, I find I have at least had the opportunity to offer the doctor a "general picture" of what is happening to me and hopefully, the fairest chance of them hearing this before they form a biased reaction/opinion to me. Imho, it still can be fairly hard for our patient community to be taken seriously by the medical community. Not that I consider it my good fortune, but now I have many, many abnormal scans (from head to spine)which now provide them something to examine.

    Lastly, something backfired on me --- I thought I was slick <grin> and kept to my pre-rehearsed presentation to this last neurologist, but did not realize how all the hospitals are connected electronlically, so patient info is stored in a large database. When I offered several select reports/ tests, this MS neurologist said that he did not need them (not even from another hospital where I had met several times with a neurosurgeon) for he had already read about my medical history ahead of time -- :-/

    Good luck to us all!!

    Rita



  7. Harmony

    Harmony New Member

    Hi Teri!

    I have lesions on my brain. The dr. told me they don't mean anything is wrong and passed it off as nothing to be concerned about. I am still wondering why I have them. I do know it is a symptom of MS which as far as I know, I do not have, but it could be from something else.
    I hope you can get an answer as to why your are showing up.

    Harmony
  8. smiffy79

    smiffy79 New Member

    anurisms yes(sorry about spelling) that would be a bleed on the brain.
    is that the same thing? just bent down one day and bam it was as though i was hit over the head-my sight went i couldnt hear properly i went all pins a needles,it was really weird.any way told my boss then he accused me of being on drugs(i was 16 at time)-got to hospital was told what it was then i freaked out and discharged myself.stupid eh.i dont think i regret anything more in my life.
    is this the same thing?
    smiffy:)
  9. Tamzyn

    Tamzyn New Member

    Yes, and of course I was frightened as at times I fumble for words. I was told they were most likely from migraines I had when younger.

    I have Fibro and it has become worse the last five years to the point that I can't do simple things such as folding laundry without pain. I do exercise in a warm pool but this doesn't help. It is very hard to deal with and pacing doesn't help. Just resting seems to be best and this becomes boring.

    Had symptoms for about 18 years with gradual worsening.

    Happy Easter All
    Tamzyn
  10. darude

    darude New Member

  11. MtnDews

    MtnDews New Member

    Add me to the list too. Lesions in the white matter. The notes from the MRI said that they were either from an ischemic event or a demyelianting disease. So brain fog is for real here. This is an interesting thread.
    H
  12. foxglove9922

    foxglove9922 New Member

    The good news is that even though these brain lesions may be causing us to forget words, numbers, etc. Once that word and number is located again, it is stored somewhere else in the brain.

    I just recently couldn't for the life of me come up with the word "cookie sheet". I asked my mom where she had the plate to bake cookies on? She said cookie sheet and this word is back with me now!
  13. jbennett2

    jbennett2 New Member

  14. darude

    darude New Member

  15. sydneysider

    sydneysider Member

    Years ago when I was trying to figure out what was wrong with me, I found that MS symptoms were similar to mine, but slightly different. At the time, I consulted a neurologist, just to be sure.He examined me in his office, using only simple tests, such as walking up & down, putting a tuning fork on me, etc., & he was sure it was not MS. I later came across some info on FM, and it matched me perfectly.

    I believe that the main differences between FM and MS, are, firstly that with FM, your skin sensitivity is high, whereas with MS it is dulled.

    Secondly I believe that problems with the eyes, or visual symptoms, are quite different for both diseases.

    Devin Starlanyl has excelent info on FM eye symptoms on her web site.



  16. natrlvr2

    natrlvr2 New Member

    I had another MRI in 2003 and was told everything was FINE. Just last month,I read my report online and found out noone told me I had brain lesions.(I did nto have them when I had my 1st CaT scan in 1987)
    It went on to say that I had more than the 'normal' amount for someone my age and that many migrainuers commonly have brain lesions.(I have 4-5) When I tried to talk to acouple of my Drs. they could nto answer any of my questions about lesions and just blew me off.
    I definitely know this affects my cognitive and my memory.Some days my brain just feels burnt out.Makes me so mad,noone can answer my questions. I am afraid to even go back to a neurologist(have seen MANY for my migraines)because all they ever want to do is make me keep trying preventives and after 15 yrs. I KNOW nothing has ever worked.I do not have simple migraines.
  17. JuteJuteJudy

    JuteJuteJudy New Member

    Add me to the list, I also had a MRI done and had several lesions that showed up.

    Judy
  18. Lynikins

    Lynikins Member

    I'm also on a migraine board and they say the white lesions can be from severe pain.
  19. darude

    darude New Member

    What were yours caused by if they put that on your mri report
  20. gravitychallenged

    gravitychallenged New Member

    I, too, have brain lesions, which were discovered when I had a SPECT scan many years ago. The test was done by the doctor who developed it at Children's Hospital in Boston. It is a very extensive brain scan that provides numerous colored cross sectioned photos. At that time, the doctor explained that these lesions would probably change over tiime and were responsible for the difficulties in cognitive funtions that I was having.

    He also told me that although some connections seemed to have been disrupted, or lost, new ones could be developed to compensate. So I took that to mean that I could somehow still find a way to get describe a cookie sheet, for example.

    GC