How Many Have Had a Brain Lesion Show Up on an MRI???

Discussion in 'Fibromyalgia Main Forum' started by dd, Feb 12, 2003.

  1. dd

    dd New Member

    I am curious because I have seen a lot of posts lately regading MRI's and brain lesions. I am wondering how many of us have lesions on the brain and if you/your doctor think that it is Fibro, MS, complicated migraine, Stroke or what?

    I have a brain lesion on the right side. About 8 years ago I was driving and the left side of my body and face became numb and my vision got really blurry. I was 31 at the time. I thought that maybe I had a pinched nerve or something...I had a car accident in 1984 that left me with neck and back problems. Anyway, the numbness did not go away, it got worse. When I got home I went to bed and thought it would be gone by morning. It wasn't. By this time I could barely lift my left arm or move my left leg. My face was still numb on the left side also. I called my family doc and told the nurse about my symptoms. She called me back and told me that the doc was not worried because I was so young. By this time I was getting worried about my health so I asked her if the doctor could just take a look at me to make sure that I was ok. She said the next available appointment was in 2 weeks. I told her that if I was having a stroke that I would be dead in 2 weeks. This was my family doctor for 6 years. Needless to say I never went back to him and also sent him a letter along with the report from the neuro that I saw. I did get in to see a neuro that same day. He sent me for an MRI and it came back that I had a brain lesion and he told me that I had a small stroke. The neuro was surprised that something actually showed up because of my age. After a lot of questions and answers he thought that the stroke was caused by the Norplant that I had put in my arm for birth control (6 months earlier). He felt that the Norplant had caused migraines (which I have had since I was 10) and that the migraine led to a mini stroke. I had the Norplant removed the very next day by my OB doc. Thru the years I have had episodes just like the first one...numbness and the whole bit. I have gone to the emergency room on a few occassions when they were really bad...had more MRI's just to be told that I was having a TIA but the brain lesion has never changed. A few years ago I started to get the numbness on the right side of my body along with some other strange symptoms. My neuro started to suspect MS and gave me another MRI. He told me that MS is hard to diagnose and that we would have to just wait and see if I started to develop more symptoms. By this time I was sick with CFS although it had not been diagnosed yet. I had all my records switched to a new doctor and while in the room waiting for the doctor to come in I began to read the reports from the neuro doc. I was surprised to read that I had developed a 2nd lesion on the brain. The neuro had told me that nothing had changed. I was pissed to say the least. The answer that I got from the neuro when I called him was that it was not a significant change and that it was right next to the old lesion. The new doc thought that I did not have a stroke at all...he thought that the lesions were caused by compicated migraines. He told me that a lot of people that have migraines have lesions on their brains. I was FINALLY diagnosed with CFS and then FM. I am now wondering if these lesions are actually from the FM and not from a stoke at all. Of course the docs have no ansewers and the MS thing is still up in the air. I suppose if I did have MS it would have gotten worse by now though. I have such a list of I am sure all of us with FM and CFS do...that the doctors are tired of hearing it all and I am tired of them too.

    Anyone else with lesions???

    Sorry for the LONG post!!!

    (((HUGS))) to ALL

  2. Combatmedic

    Combatmedic New Member

    I have one lesion in my brain. The neuro thinks that it is early MS. He's waiting for a little more evidence for a clinical diagnosis. The radiologists report said due to my age, and the location of the lesion, that he'd suspect MS, rather than small vessel ischemia or stroke. I'm 25 y.o.
    My last MRI's in November also
  3. Combatmedic

    Combatmedic New Member

    My MRI's in November also showed no changes. Just the same ole lesion stickin' around. I also had an EEG, SSER, and ENG. The SSER showed I have permanent nerve damage consistant with the lesion location.
    I have to have repeat MRI's again in May/June. The neuro also wants me to come in for a spinal tap.

  4. dd

    dd New Member

    Bumpety Bump
  5. dd

    dd New Member

  6. klutzo

    klutzo New Member

    I'm so sorry all this happened to you.
    I have a friend, who does not have FMS or CFS, who had several mini-strokes at age 33 and has a permanently droopy eye as a result, so it can happen young.
    Migraines make a person much more susceptible to stroke, as they cause constriction of blood vessels in the head and neck, and abnormal clumping together of blood platelets, which can cause clots. I have not heard of migraines making lesions all on their own without causing a stroke, but I am not a Neuro!
  7. evileva

    evileva New Member

    I had a couple of lesions show up on my first MRI, they also said "possible MS" and then my PCP finally said that I had cfs/fibro. My new PCP is sending me for another MRI tomorrow. The MS is not ruled out yet. It has been over a year since the first MRI so we will see if anything has changed. Keep looking until you find a good doctor. If I were you I think that I would look for an MS specialist instead of a regular Neuro. LOL, The first Neuro that I saw told me I was depressed, and this was after seeing me for 2 minutes. So hang in there. I sure am trying. LOL
  8. dd

    dd New Member

    Just wanted to wish you good luck tomorrow. Let us know how the doc appointment goes.

    Thanks to all that have responded.


  9. dhcpolwnk

    dhcpolwnk New Member

    I have *lots* of lesions in my brain, as shown in my last two MRIs, but my first one back in 1985 showed only a few white spots. But that's from MS, not fibro.

    My MS was diagnosed in 1978, though the first symptoms showed up as early as 1967. To be honest, your description really sounds a lot like MS to me. Back when I was diagnosed--boy, I really sound like an old fogey after using that expression, don't I?--anyway, when I was diagnosed, the MRI wasn't yet being used. It was common for diagnosis of MS to take 7-10 *years*. I know that even now, it's sometimes difficult, but it shouldn't take nearly that long for the vast majority of cases.

    I'm no expert on MRIs or radiology, but I would think damage from a stroke would look different from MS lesions. Also, there are different kinds of lesions they can look for in an MRI. I also thought imaging for strokes are usually done with a CT scan rather than an MRI. Maybe be doing both and comparing them, your doctors can tell whether the MRI lesion is likely to be stroke damage or not.

    You said you were 31 when your neuro expressed surprise about a lesion showing up on your MRI. I was 32 when I was diagnosed. I did know a woman about that age who had a stroke, but I think MS is actually a much likelier diagnosis than stroke for that age group.

    I don't know anything about lesions from migraines, but I never heard anyone indicate that fibromyalgia or CFS causes brain lesions. In my case, I guess there would be no way of knowing, since I have both MS and fibro.

    I know it's tough to go through the diagnostic process, especially when the major possible suspects--MS, FMA and CFS--all are so hard to pin down. But it really is important for you to get a diagnosis if you have MS. The new MS drugs aren't cures, but they have been shown to reduce the number and severity of attacks and to slow the accumulation of long-term disability.

    Good luck to you. If you have any questions about MS you would like to ask me directly, you can reach me at

    --Laura R.M.

  10. Carlacat

    Carlacat New Member

    I had two that showed up. Doc said it was not MS cause it didnt have the "black hole" look so they said it was from headaches. Which I dont understand cause I really dont get too many headaches but I've had 3 MRI's and they said they were okay. I have one every 3 to 5 yrs anyways cause my mother had a brain tumor at one time and they said it could be passed down.
  11. momofafibro

    momofafibro New Member

    I'm new here and have been reading some of the posts. When I came across this one it reminded me of posts I have seen on my lupus board. TIA's are sometime caused by Hughes Syndrome which affects the way blood clots. Maybe a google search on this suject would be of some help? I hope I haven't offened anyone by jumping right in.

    [This Message was Edited on 02/13/2003]
  12. bunehgr

    bunehgr New Member

    I have had severe migrains since i was 6 years old and have had many MRI of my head and neck and no leasons. I have FMS. I questioned my Dr on my last viist after reading about so many fibro having them. He checked all of them MRI and said I didn't have any leason. I am 52.
  13. Harmony

    Harmony New Member

    I do! I just picked up a copy of my report of the MRI I had last week. It says I have 2 lesions of increased signal (whatever that means?) in the left periventricular white matter. These are parietal lesions. One is 5mm and the other 3mm. I had it done by my Neurosurgeon at Barrrows who is going to do my back surgery in July. I told him how lightheaded I get so much so he order this MRI. He has not talked to me about the results so I am curious as to what he will say about the lesions. I was interested in all the posts on this when I did a search on it. I too, am wandering if FMS and CFS has anything to do with brain lesions.

  14. Applyn59

    Applyn59 New Member

    Those of you who have had them, were you having
    particularly bad symptoms that prompted these
    tests or did you ask for them to rule MS out
    without any kind of symptoms?
  15. goingslowlycrazy

    goingslowlycrazy New Member

    Paul Cheney sent a lot of his cfs patients for MRI's and a high percentage of them had 'pin prick' lesions.

    The CDC tried to say that, in that case, these people did not have cfs, but MS, despite the fact that MS lesions are not pin prick 'bright spots'.

    As far as I know, 'bright spots' on MRI are not considered diagnostic of cfs - but it has long been recognised that people with cfs can definitely have them (if that makes sense).

    You can read much more about this in 'Oslers Web' - a stunning (and anger inducing!) book about the 'history' of cfs, from the Tahoe outbreak onwards.

    It's very detailed, about the docs concerned, the government bodies involved and the research undertaken. I couldn't put it down...

    Mary x
  16. joannie1

    joannie1 New Member

    I have been curious about this also actually. I have been going through the mill with medical tests in the last month. I have been dealing with severe migraines and coordination and balance problems. My Family doctor sent me back to the Neuro who treated me when all of this began 31/2 years ago. he began by sending me into PT for 6 weeks. I went into a terrible flare and she is the one who seen all the symptoms that went with it. She personally called the Neuro herself and he called me into the office for medical testing for "MS" to begin. My MRI report came back with three large areas of demylenation/lessons whatever in the white matter of the brain. He then insisted a spinal tap. I did not want this at all. And it was horrible. I returned to him yesterday and am totally angry with him. I have to go to the U of Iowa because I have all the symptoms and the "progression" of the disease is documented for MS he said. he said he figured this to be the most clear cut diagnosis he had ever made. the MRI is showing positive BUT because the spinal tap came back normal he wants the U of Iowa to diagnose this. I stated that I had read that only 90% of the time does it show up on the spinal fluid. He was shocked and said you are right, and doing your home work. So, here i am going through all of this at the expense of my banking account and progressing with every flare but they just don't know. How can they not the proof is there.

    I have read so much about Fibro and MS and I have to wonder are they one in the same disease? Is fibro the very mild degree of MS to where often times it doesn't disable and show no brain lesions? It sure does carry so many overlapping symptoms to make one wonder if this is really something that could be possible?
    Take care,