Neurologist report is in

Discussion in 'Fibromyalgia Main Forum' started by skyeone, May 24, 2006.

  1. skyeone

    skyeone New Member

    I dunno, do you consider this good or bad?

    My Neuro told me today that even though he's not going to rule out MS, he doesn't believe that's what's going on with me. In his opinion I'm predisposed to suffering from clotting problems, and therefore need to stay on low dose daily asprin as a regimine against forming more clots. He is hoping that the spots in the white matter of my brain are strictly from having strokes. (which coincidentally are continuing). He also says that the nerve damage that I have is irreversable and will likely continue to get worse.

    Further more he says that until I start to get worse, there is nothing more he can do for me. He is going to be sending a list of meds to my family doc for all the migranes that I'm having, but even with that, there are few I can use. Some cause me to become severely depressed, others induce clotting, and then of course there are all those lovely pain meds that aid in triggering heart murmurs, of which I already suffer.

    So there you have it, I did promise to let you all know what the doc said, once he gave me his conclusions. To me it doesn't sound like much more than a run a round, but who knows!?! And as for not having MS, I'm not altogether sure that I prefer having mini-strokes regularily over that, but what do I know? I'm not even sure what MS does to a person.

    So there you have it folks, the highs and lows of a doc not being able to come up with a true diagnosis. Oh yes, almost forgot! Everything is exasperated by my having fibromyalgia, go figure, chronic fatigue doesn't help either of course!!
  2. place

    place New Member

    He said you do not want one of those doc finding anything. He said lets hope you don't come back with a horible dx.

    I told him that's what everyone says about Rheumy's! He laughed and then 10 minutes later he gave me a dx or FM!

    I guess I will find out who the joke is on in the end!

    Keep plugging along and you will get there!

    good luck
  3. lenasvn

    lenasvn New Member

    Wow, what a situation you're in healthwise.

    May I be curious and ask; you mention mini-strokes. Do you have time to tell me how you experienced those? I wonder about some experiences I've had, but am not sure what to think.

    I hope you can get the help you deserve. Hopefully someone may have a better input/ advice than I (didn't) have,,LOL!

    Lena
  4. sydneysider

    sydneysider Member

    A Neuro that I went to suggested the herb feverfew as a blood thinner. I wonder if you've ever heard about this. There's info on the internet. Seems that it helps stop platelets from clumping.

    As I say...just a thought.
    All the best.
    Robyn.

  5. tlayne

    tlayne Member

    I just looked at your profile & you are way too young to be having TIA's. I am assuming that you have gone to a Cardiologist. Have they done an Echocardiography ( ultrasound of the heart which will show the structure & function of the heart)? Have they done an Transesophagel Echocardiography via the esophagus?

    I am asking because my 22 yr old daughter had a baby & 2 days later she had a TIA. The Cardiologist did these two tests and found that my daughter had a "Patent Foramen Ovale". She had to have heart surgery. Five years ago it would have to have been done with open heart surgery, now it is done thru the vein in the groin. She had the surgery and left the same day!

    Please search low dose Naltrexone for treating MS. It has had 100% success rate for stopping flares of MS. It has no side effects, so even if you dr. is not sure if you have MS, it will not hurt you to try it.

    I hope this helps. Keep your head up! Hugs, Tam
  6. winsomme

    winsomme New Member

    the only thing i would ask is if the neurologist is an MS specialist.

    because MS is a really specific disease with a very complicated disease process. that is why neurologists often have to specialize in this disease in order to really get it right.

    they also have to follow a lot of research because MS research is moving very fast and there may actually be some links between MS and CFS.

    so if you have an abnormal MRI, i might actually suggest seeing a neuro that only treats MS patients.

    here is a web site that has a "GOOD DOCS" list that might be a place to start if you want to do that.

    www.clams.org

    also you might want to check out Lyme. especially if you have neuropathy.

    the best place to get info on that is the "flash discussion" boards at LymeNet.

    www.lymenet.org

    let me know if you want any more info on this. i don't want to say that you should or should not do this, but it is nice to have options.

    thanks
    bill
  7. winsomme

    winsomme New Member

    here is a good forum for MS advice:

    http://brain.hastypastry.net/forums/forumdisplay.php?f=181

    you'll have to copy and paste this link into your search field.

    if that doesn't work do a google for:

    braintalk, multiple sclerosis
  8. skyeone

    skyeone New Member

    Tam, I'll answer your comment about a cardiologist in a seperate post, ok!?!

    Bill, thank you for those web sites, I will most certainly be looking into them.

    Winsomme, that comment goes for you as well, I'll also be looking into that one.

    Sydneysider, thanks to you as well, I'll talk to my doc about that herb, see what she says. And then perhaps try it out if it's not contraindicative of my other meds.

    Tam you mentioned that I'm too young for mini-strokes, I'll say!!! The first one I had I was only 22. And they've been going on ever since.

    Thanks again to all
    Hugs,
    Skye
    [This Message was Edited on 05/25/2006]
  9. dleaning

    dleaning New Member

    I also have white matter lesions on the brain, and my neurologist thought the same thing...MS. She did a spinal tap and that came back normal. I did go see an MS specialist who ruled out MS. I do have a seizure disorder. I have had 2 gran mals and a few petit mals. The gran mals where 15 yrs apart and the petit mals happen occasionally, for what reason, I still don't know! As far as mini TIA's, I don't know. My neighbor had one and he had numbness on one side of his body and I definitly think you would know something is seriously wrong.

    Hope this helps!!
    Dawn
  10. Cromwell

    Cromwell New Member

    I just wanted to tell you that almost everyone over 45 has white brain lesions and your neuro should be telling you this. Mainly they are caused by migraines.

    I also wanted to add that the migraines I have make me go almost blind (optical migraines in left eye looks like the room is breaking into shards), cause me to get very foggy, floating, lose my memory, and cause left sided numbness. TIA's (mini strokes) are absolutely nothing like this, they cause little to no symptoms, as they get bigger, they cause a sort of jolt feeling. I am thinking you are having very sever migraines that are causing the lesions and the symptoms. I would see a vascular specialist and find out exactly what it is. It sounds so much more like migraines than TIA's to me, but I am not a doctor just familiar with both.

    I felt he is worrying you without due cause saying strokes. What sort of strokes have you been having? How were you tested for these? How were they confirmed as definately strokes? The white lesions don't conclude strokes by any means,(my cousin who is aprf of radiology said that if everyone over the age of 45 had to have an MRI then nearly all would have white lesions (called UWO's-unidentified white objects by radiologists) unless you have also had the physical symptoms of stroke, which you may have had, but you need a finer dx on that so as not to be worried without due cause. Even so, the lesions are probably from the migraines right now with a lower possibility they are strokes.

    MS cannot be detected from MRI's and any neuro having any doubts at all would order spinal tap. If he has not done so, I would ask him why, does he think it is too remote a chance?

    Has he done the sitting, lying down and standing BP tests re clots?(Pooling factor) Has he ordered dopplers on your limbs and a spiral CAT scan to see if you actually have any? If not, he should be. 81mg asprin is a good idea for any of us.

    To say he cannot do anything as yet is stupid. You can help with nerve pains by good PT and certain meds, like neurontin can help many people. If not that, which I cannot take, 1mg valium helps me. My nerve pain and numbness is greatly helped by my good PT.

    Your heart murmur- many people live long good lives with same, my mum had one for 25 years and lived to be 88. You are right, some meds can cuase them.

    I would go and get a second opinion as he has been far to suggestive and vague-was this guy just trying to scare you or what as his responses sound totally unprofessional and not accurate at all. He is guessing out loud, but leaving out details. Have you had all the other rule out tests? Be proactive here, some neuros say and do things just to be grandiose. I went through this with one, and two others laughed at the same suggestions that had me scared to pieces. This is why I am writing to you, just in case you are getting the same deal, not to doubt you, but to check on the neuro.

    Love Anne C
    [This Message was Edited on 05/25/2006]
    [This Message was Edited on 05/25/2006]
  11. skyeone

    skyeone New Member

    Yes I've had the doppler sitting, standing and lying down. Also the ct scans. I had a massive DVT 2 years ago and since I was taken off my warfarin and fragmin I've been on low dose asprin.

    As for my heart murmur, I've had it since I was 6 when I had rheumatic fever. At that time I was diagnosed with rheumatic arthritis and a rheumatoid heartmurmur. So now whenever I go to the dentist, or have any type of surgery done I have to be on anti-biotics.

    The only test my neuro hasn't done is the spinal tap. I've had all kinds of nerve conducion tests. Including the staring at a tv screen to seee if I have any blind spots or whatever. None of these tests came out looking too terrible good. I have a lot of optical nerve damage in my right eye, and the left sometimees feesl like it's going blind on me.

    Another symptom I have is dizziness, I can't shower anymore without getting incredibly dizzy. As for the tia's I can't remember all the tests I had done for it, but they did come back positive. The worst symptom on that was temporary paralasis on my left side, thankfully it went away and is now just a lot weeker than it should be.

    Thanks for your advice, and wehn I next talk to my doc, I'll make sure she clears up what the neuro is saying. Due to the fact that I have had that massive blood clot there are a lot of meds I can no longer take as they "promote" clotting. And yes I do know that I suffer from a lot of migranes as well, which makes it hard to tell if that's alll I'm suffering from or if there are strokes involved as well. But I've had enough independent doc's saying there is enough evidence to show that I have indeed had several strokes. The neuro only said that about strokes as he knows what the other docs have said about it.

    Thanks again,
    Skye
  12. Cromwell

    Cromwell New Member

    Thanks for responding. Well it seems as if it is this, but I do think still your neuro could be more proactive for you.

    I am sorry you are going through all of this. Now it makes ME wonder if these same symptoms I get that are dismissed as nerve and migraine could be TIA's(LOL)

    The dizziness is the pits. I had vertigo for 9 months thought it had cleared up then today I was hit wham with massive attack. it has taken Mecalzine and 6 hour rest to make it calm down some. I HATE feeling that way.

    You know DH had been cooking using a teflon pan on high heat when I was out and the vertigo hit me as soon as I waked in the door, I wonder if it is the chemicals from the teflon?

    Love Anne C PS Let us know how things go. I feel so sorry for you Hon.
  13. skyeone

    skyeone New Member

    Don't feel sorry for me, I do enough for the whole world sometimes......lol. And as for the teflon you mentioned, it is incredibly toxic and not only if the pan is scraped and some of the coating comes off in your food. I've worked as a cook in enough restaurants, and have been told at each and everyone that you would never find a utensil, pot or pan with teflon coating in any self respecting place of business. It's been too long for me to remember all the reasons except that it is very toxic. Sorry aobut that.

    Skye

    and yes I will keep everyone updated as to what's going on with me. One thing I don't think I mentioned before, when I get a migrane it usually lasts about a week. This last one I've now had for 2.5 and no amount of tylenol will work. Unfortunately I can't take migrane meds, and I believe I explained why already, if not I'll edit this comment and explain.