Discussion in 'Fibromyalgia Main Forum' started by monicaz49, Nov 9, 2006.

  1. monicaz49

    monicaz49 New Member

    after a year of many doctors i saw a neurologist.
    Keep in mind i have a CFS and a Fibro diagnosis.
    He tested me in his office by checking my strength, pupils, etc etc. He said i definitely see somthing is wrong. Your left side is obviously much weaker. (I also have a slight staggering left foot).
    He asked if my vision has been blurry..i said yes. he kept looking at my eyes with the i could tell he was noticing something.
    I told him i get numb sometimes..but mostly in my left side.
    I told him about my heat sensitivity, fatigue and weakness.
    He insisted we have an MRI done (which is what i wanted anyways).
    Now...there are plenty of symptoms i didnt mention to him (anxiety, irritability, alcohol intolerance, etc etc) So i'm looking for some input here. Does it sound like something familiar? Maybe MS???
    And if the MRI comes back with those white lesions i hear about...couldnt that indicate CFS also? Could one be misdiagnosed?
    Also, when i tested high for candida my doc told me that only haappens in people w/ seriously immune compromised bodies (like cancer). Does MS make u immune compromised? If so....then the candida can be likely??
    Sorry so many questions...i'm just lost.
    **Im so confused and veryscared.**
    I'm only 31, and a single mother of 2 very young boys.
  2. monicaz49

    monicaz49 New Member

    thank you both for writing.
    Its interesting because depending on what symptoms I choose to talk about....people tend to think it something different.
    Some have insisted im a classic Candida candidate.
    Others have said you are soooo CFS.
    Then there was Lyme....
    Now this.
    Ok...thx everyone
  3. jmcdelaney

    jmcdelaney Member

    Hi Monica,

    Take a deep breath. I totally understand where you're at. My doctor sent me to a neurologist prior to going to the rhumey. The very first thing he sent me for was an MRI. His notes said that a for woman of my age (39 at the time)to be experiencing such unusual symptoms MS must be considered. My MRI was clear. At the time I was experiencing weakness on one side (if I recall it was my right side which is unusual because I am right handed), wobbley legs, my legs felt like I was trying to walk with flippers on, tingly hands, puffy achey hands...and who knows what else.

    Also, I have read that lyme disease can cause white lesions. As far as misdiagnosis, I believe that if there are white spots on the MRI the next step is a (sorry...) spinal tap to confirm the diagnosis.

    MS is in fact an auto-immune disease just as are lupus, arthritis, and many others. Unfortunately, from what I remember reading, MS has many similar symptoms to FM; but so does Lyme disease. I know it's scarey, but do some reading on MS. There are many forms of it, and some people never get worse. And Again...It could just be Fibro. But Bravo to the doc for checking it out.; shame on the doc for mentioning cancer without evidence!

    Good luck, stay tough and if you can't stop worrying about it, research it.

    Rubbing your shoulders, Joann
  4. Gothbubbles

    Gothbubbles New Member

    My doc thought I had MS for a year.
  5. happycanuk

    happycanuk New Member

    I went to a Neurologist years before MRI's. I was having extreme back pain. He tested me for MS first, and then did surgery to remove a disc and other stuff. So, don't be scared. You have plenty of time to worry after a diagnosis. It might never happen, and you have wasted all your energy on worrying. Sending you soft hugs.
  6. chloeuk

    chloeuk New Member

    and weakness down one side, it lasted for a couple of months, I had mris and neuro tests and everything came back fine...if an mri does show something they can do a spinal tap to get a dx of MS...I know its hard but try not to the end of the day we dont have control in these situations...our bodies do what they do and we have to accept that we have no control...whatever is wrong you will deal with because as mothers thats what we do...stay strong I am sure it will be ok...but I know where you are coming from.

    FOYBOYFOY New Member

    your going to worry yourself to death. many of us have been through similar situation. sending me to an oncoligist scared me to death, i figured i was a goner, bone marrow test, after 10 doctors i have several dx. 2 brain mri because they thought i had ms. it appears i will live !!!!!! the thing that helped me the most was live in the present, dont look to far ahead, just look a day or two down the road. this was and still is a great help to me, i will pray for you dear. THE BIBLE SPEAKS OF A MAN KNOWN AS "THE GREAT PHYSCIAN", HIS NAME IS JESUS, GOD BLESS FOY
  8. kat-E

    kat-E New Member

    Have you tried going on an anti-candida diet? It couldn't hurt.

    Look up The Yeast Connection by William Crook, series of books.

    My docs said the same thing. I was on the diet and took probiotics for a year and did notice a substantial difference in my energy levels and the numbness and tingling aspect of it all. I did have problems with most of the alternative grains, but I did find that rotating foods in my diet is extremely beneficial for me.

    It is worth a try. And it is something you can do for yourself.

    I would still get the MRI, if they still think MS they can always do a spinal tap to check the CSF for the markers that say MS.


  9. carebelle

    carebelle New Member

    I have had doctors tell me I might have MS only to send me for mri's and nothing show.They have been telling me this for 15 years.
    I am being sent to a Neuro Doc now because I keep getting needles shooting up my leg.

    I know this sounds terrible but I figure if I ever end up with a well known desease at least the doctors will take me serious and know how to treat me.

    I do not feel like I would be surprized at all if they find anything with me.I feel so terrible most of the time it would almost be a blessing to find out why I am so much in pain that no one can explain.

    goodluck but like most of us your test will probably come back normal .Only to confuse you more about these DD's.

  10. Cromwell

    Cromwell New Member

    If everyone had MRI's done 75% of people would have white lesions showing. Headaches can cause these. If peoople over 50 had them done the number would be greater that 75%.

    Please don't worry about them unless they are in unusual locations then your neuro will be on it.

    I do think that our tests can be alarmingly misleading. Get the test done, stop scaring yourself and see what the neuro comes up with. And yes, I think that FM and CFS does lead to some confusing medical results that look like other stuff and we can be run down enough to have odd numbers.

    Love Anne
  11. monicaz49

    monicaz49 New Member

    i appreciate you taking the time to reply.
    this morning my test from Igenex came back showing positive for Lyme doctor isnt worried...she says that doesnt mean you have active lyme and i dont suggest doing any treatment.
    now im even more confused and irritated.
    My candida was high...they dont care..
    lyme showed negative at kaiser but positive at igenex.they dont care
    cortisol very high but they are not concerned
    CFS diagnosis and now MRI from neurologist.
    Im TIRED.
  12. lenasvn

    lenasvn New Member

    Lyme is consistently ignored and it's seriousness as well. If you have a positive one, you need to learn everything about Lyme. (I think) have this info. It sounds Lyme-y to me. The mood changes, irritablility, weakness on one side, very much like Lyme. Find a Lyme litterate doc.
  13. abcanada

    abcanada New Member

    Hi, I'm in a very similar postion as you, except I just had my MRI last week, and still do not know the results. The other thing I would add to my condition is that I have severe daily migraines, and very strange visual disturbances that are always present. I saw a neurologist recenlty, and he kinda brushed me off. My doc feels it may be MS. We'll see. I'll let you know when the MRI is back. When do you go for your MRI? I actually had to wait 6 months for it, and my appt> wasn't supposed to be until Feb 2007. Great Canadian health care! I'm 32 and have 4 young kids, but am married, Thank god, as I couldn't have gotten through this on my own. He's been away all week, and coming back tonight. I missed him dearly@!!!Take care, and keep us informed. Do you have anyone in your family with MS? I know it's not directly related, but I just discovered a blood cousin who was adopted out at birth who has MS.
  14. lsmbrenz

    lsmbrenz New Member

    Hi Monica;

    I know exactly how you are feeling. For the first time since I got sick 2 years agao one of my doctors mentioned I needed to be tested for MS this past summer. I had the MRI, completely panicked as I read everything I could get my hands on about MS. I have blurred vision and tremors and also had a bad candida (thrush) infection when I was first diagnosed with CFS.

    Anyway, the MRI did not indicate MS, although it did show some type of lesions. So I am back to the CFS diagnosis, which was a relief, I am used to that one!

  15. I know you are scared out of your mind. Your doctors aren't exactly genius's in the area of, uh, not scaring the sh** out of you, either, and that doesn't help..when they act *interested* first off....we immediately get scared...cuz they usually care less. and when anyone looks us over like a neuro does...we think "omg, it's (a tumor, for example) I just know it! Why's he so quiet! What the heck does, "mmm" mean, or "mmmhmm" what's he doin' with *that* tool, why isn't he talking! etc etc"

    I was diagnosed with MS 5-6-04, by two neurosurgeons & a radiation oncologist, who were treating my Trigeminal neuralgia--a facial nerve condition, that "when seen in young woman, usually under 50 and especially under 30, is usually related to MS" (blahh blahh blahhh).....

    I guess, because, I had been to soo many doctors, saw my neuro every 4-12 wks for around? 26 months, before I'd heard the "official" diagnosis, is why I'm so non-chalant, or maybe even flippant? dissmissive, of it may be the word..

    I had known since my first MRI it was suspected. I was 23, and it said "due to the patients age, and lesion location, MS should be considered" Even my mom when I got in the car, said, "I've suspected that all along" I had tons of MS symptoms, and my hands got to where they stayed about 80% numb/tingly...feet burned like nothing I could describe, I've had heat intolerence since I was young, numerous vision problems, etc...

    But, Finally! After several years, some of those scarier symptoms (I walked with a quad cane for almost 2 yrs, due to falls, and also had a wheelchair for ANY decent amount of distance, ANY store, etc) I do not use them, and have not, since March. I don't know *why* I started falling, I don't know *why* I don't now...I'm just glad. Hope I don't ever again. My knee still caves, but, I don't go down.

    Who can ever tell on *some* things,--vision probs, yea, sometimes heat aggravates them---so did a lot of meds, same with balahce...

    I don't know....I've had the same 2 lesions for yrs now, haven't even gone for an MRI in 2 yrs...8 of them & 3 CT scans + Spine MRI's in 2-3 yrs was ENOUGH for me. One of my lesions went from 7mm to 2mm, both are 2mm at last check.

    ONE of the two, was in a 'typical' area for MS. In fact, the internet* every site, says lesions in that area of the brain, are seldom due to anything other than MS.

    I had always said, "I don't care what they call it, I still hurt just the same, I'm still as sick, and I just want SOMEONE to treat me.."

    Well, I've gotten that somewhat, but, really, my pain from fibro, neuropathies, arthritis, bulging discs/herniated disc....those, those are what stay with me 24/7 and what cripple me the most, & fatigue.

    Don't care what it's from, as long as someone helps me.


    You ask, does MS make you immune compromised--well, with MS, the brain sends out wrong signals/receives them wrong, and the body/brain attacks itself* which is what causes lesions...(this is a very loose, lazy, explanation, and I'm soo sorry, it's 5am and I'm drop-dead tired...)

    The immune system, is "amped up" so to speak, to attack...and attacks the wrong in acute flares with MS, people are put on I.V. Solumedrol, or oral steroids, to reduce inflammation, and somewhat suppress the system--to stop the attack..

    Please don't panic so much. I know it's easier said than done,...but, MS can take up to 15+ years to diagnose! Neuro's do A LOT of tests, history, monitoring, unless you have an undeniable full blown attack --say optic neuritis, total paralysis in one, or both legs, plus MRI shows lesions/active and or inactive, and then a positive spinal tap...

    Otherwise, the majority of the people I know with MS, on average, took between 5-7 years, and a lot of them saw as many NEURO's before diagnosis. I have had a TON of neuro tests, many many doctors said MS, but, I think they just jumped on board with the two neurosurgeons from Methodist, my *treating* neuro, "doesn't feel comfortable with that" and said putting me on an injectable med, could possibly make me sicker, and there's no proof whether the drug is working, or if it's just a person's natural course of the disease" --he's got a point. And the injectables are a very personal choice for everyone..they are rediculous (over $1,000 a month!) and come with MANY side effects. I feel I'm ok, and just trying to survive FM/CFS & other illnesses.

    I'll probably have an MRI sometime next year, just cuz. haven't since Nov 04' but, I'm not real concerned. I'm too tired & in pain to be.

    Please don't worry, we're all here with ya... LYME btw, I've read, can *also* cause lesions in the white matter. An educated neuro can tell what's what..

    Take care, we'll be thinkin of ya~~

    ~~~Laura-28, FMS, CFS, MS, IBS, FBI, CIA, PMS, ESP :)~~~

    Keep us updated.
  16. winsomme

    winsomme New Member

    if you want to investigate Lyme, you really need to see a Lyme Litertate Medical Doctor (LLMD).

    to find an LLMD near you, go to, and go to their flash discussion section (this is their message boards).

    register (it's free) and go to the "seeking a doctor" or "medical questions" sections and post a question asking for an LLMD in your area.

    let me know if you ahve any questions.

  17. karinaxx

    karinaxx New Member

    i am going through the same thing in the moment.
    since about one month i am supposed to fly to another city to see the Neurologist and i am not able to, because i am to weak.
    it is scary, but i would prefere to be diagnosed only with MS, as crazy as it sounds. it is better known and at least some treatments are available.
    But i am so typical cfids, that a diagnosis of MS would just add to it.
    i also have a son of ten and it scares me every day, because i see i am barly able to take care of him.

    its all very hard, wish you luck and take care
    P:S: the sooner you know and treat, the better chances you have it will not be progressive.
  18. MelaC

    MelaC New Member

    I have white lesions on the frontal lobes of my brain. They were first noticed when I was 19 and no one semed overly concerned about them. About 6 years ago I began getting really severe migrains. It felt as if there was a build up of pressure in my head and it was going to explode. The left side of my face went numb and my eye looked as if it was bulging. The left side of my body felt lame and I was very clumsy. I found i had problems speaking as well. The exhaustion was terrible. I was sent for an MRI and saw a neurologist. Well he first said he thought I might have had a stroke but that was ruled out he then said maybe it was MS as the area where the leasions are tie in with that of MS. I had a spinal tap but that came up negative. I was sent to an opthalmologist and they could see something going on with the optic nerve but they weren't sure it was MS. My symptoms got worse so the neurologist admitted me and gave me intravenous steroids, well it made me so ill I felt like I was going to die, due to the reaction I had from the cortisone he said it wasnt MS as people with MS get better on steroids. They then sent me to a rheumtologist who tested me for Wegener's and so it went from one condition to the next, each illness worse than the last. All the test came back negatively. My nerves were shot and without me knowing one of the specialist who came to see me brought a psychologist with them. The specialist said he was sure it was not MS and there was nothing he could do for me and I would just have to live with the problem. I burst into tears from all the stress and frustration. He left and I couldnt understand why the other doctor stayed behind only then did she introduce herself. She told told me she believed I was ill and wanted me admitted to a psychiatric hospital well that was the cherry on the top. I was so devestated, I phoned my hubby to fetch me and I went back to my GP who was horrified. I told him I didnt care what it was I had had enough.

    I have since had a couple more MRI's done and the white lesions have increased. I have been told that MS should not be ruled out. I have been told I definitly do have ME and candida. My immune levels are very low as is my cortisol both definite symptoms of ME. I have stopped worrying about what could be wrong and just accept that I am ill and take thinks one a day at a time.

    I am blessed with 2 wonderful sons and a husband who support me. I can only say yes doctors can really scare you half to death but take it a day at a time. Yes we would all like to hear them say right you have whatever it is and this is what we will do but its unlikely and stressing and getting worked up wont help but rather make things worse. Hang in there Okay.