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I need some opinions please?

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BeausMomma
BeausMomma

So I went and got my MRI done on my brain with and without dye. My neurologist seemed to just want to call it fibromyalgia and call it a day from the get go. The results came back and said there are "scattered juxtacortical foci of increased signal seen on FLAIR imaging." The neurologist says I don't think this is MS, I think it's Fibromyalgia. I think you should just go to a Rheumatologist, have him slap a Fibromyalgia diagnosis on you and call it a day. So right at the end of my visit he say here, I'll send you for a MRI for your spine and neck. My question is do I spend the money on the spinal/neck MRI for a doctor that already has it in his head it's Fibromyalgia or should I just find a Rheumatologist and see what happens there?

0 likes, 16 replies

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  • wendy80842
    wendy80842 BeausMomma

    Posted

    If you feel, strongly enough, that this Fibromyalgia diagnosis isn't correct, then you may well need to get this other MRI done. However, perhaps it would be both more cost effective AND more reassuring for you to seek a second opinion instead.

    As you're mentioning paying for MRI's, would I be right in thinking that you're in north America?

  • Oddity
    Oddity BeausMomma

    Posted

    May I ask what are your symptoms?  What prompted your PCP/GP to send you to a neurologist?  I myself have twitching in my legs, pain my lower legs, and some parathesia throughout my body.  I am in my 40's.  My brain MRI shows similar white matter lesions in the subcortical region.  My diagnosis is still in limbo based on a clean spinal tap and clean thoracic MRI.
  • BeausMomma
    BeausMomma

    Posted

    You're right Wendy. I live in Pennsylvania. It just felt to me like he had no interest in what I had to say. He didn't look up at me once as I answered his questions. He closed his folder and said "You have Fibromyalgia, go to a Rheumatologist and have them slap a fibromyalgia diagnosis on you. At least you'll get some relief.

    I've been going back and forth with my primary doctor for about 5 years now about this. It started with just some pain in my hip and a little in my back. It lasted for a few weeks then was gone. A few months later the hip and back pain came back but this time it brought along knee and ankle pain. I kept telling her it feels like a deep like down to the bone just ache.

    She sent me for a ton of lab work and ruled out Lupus, Lyme Disease, and any issues with my Thyroid. My rheumatoid factor was at a 7. She said it needs to be a 14 or plus to be considered a rheumatologic issue.

    Every time I have an "episode" it seems to be worse than the last. Right now I'm going through another "episode" and I feel dizzy, lightheaded, I'm having muscle spasms, my toes and fingers tingle, I've been forgetful, hard getting thoughts out when I'm talking, so tired and weak all the time, my balance is off, I'm depressed, I now have 0 sex drive, mood swings, hard time falling asleep, I get winded doing simple tasks now, constipation, my eyes are blurry sometimes, my right side seems more weak than the left, I've been falling a lot, and I have this pain around my waist that makes me feel like I'm wearing a corset all the time ... This has been my worst episode so far.

    • wendy80842
      wendy80842 BeausMomma

      Posted

      I'm so sorry that you're going through all this pain and stress, I remember only too well what it's like. I also remember how it feels to be dismissed out of hand, like you've been. Dr's who treat people this way ought to be sent for retraining.

      You don't mention having had a lumbar puncture done, unless I'm misreading your posts. The way you describe the awful neuro. he sounds like he's 'older', if he isn't, he sounds like he doesn't give a rat's a$$ about patients, it really isn't good enough. I do think, IF it's possible, a second opinion is called for. I'm in the UK, so I don't know anything about the kind of options you might have now, sorry. Write EVERYTHING down that you can, including about what you're feeling, I know, from personal experience, what it's like dealing with illness and depression, if you can, it really can be useful to cry at regular intervals (I lost sight of this, ending up having a few weeks of panic attacks, until it was pointed out to me). If you aren't already taking any, do please talk to your primary Dr about antidepressants. If you're taking some already, perhaps a change of med or dosage could be called for (?!)

    • BeausMomma
      BeausMomma wendy80842

      Posted

      You're right. He is older. I asked him about the lumbar puncture and he completely dismissed me. He said it would just be a waste of time and a procedure. He just handed me the script to get the spine MRI, reinforced to get a Rheumatologist because he knows it's Fibro, and sent me on my way.

      Maybe I'll try my luck at trying to find an MS Specialist Neurologist and see how that goes.

    • wendy80842
      wendy80842 BeausMomma

      Posted

      While I appreciate that you can't rule out fibromyalgia entirely, you're not going to be able to get to grips with your situation until you have some faith in your diagnosis. As there's such a big crossover of symptoms, between fibro. and MS and you've been seen by a very obstructive (so called) professional. I can't imagine that you're going to be happier until another opinion has been sought. BTW, any competent neurologist should understand, that MS can't be ruled out without a SERIES of at least 2 MRI's being done, with time between, to look for possible progression, a lumbar puncture sample being examined and a good history of your experiences being taken. My blood is boiling for you. It's just too easy for older Dr's to get out of touch with modern standards and procedures, and it's we, the patients who suffer.
    • BeausMomma
      BeausMomma wendy80842

      Posted

      That's what I mean. I'm suffering in pain and everything, no medication or anything but the neurologist just wants to slap Fibro on me and ship me to a rheumatologist but the rheumatologist I saw first said no it's ms go to a neurologist. So frustrating.
    • wendy80842
      wendy80842 BeausMomma

      Posted

      I think that your idea of finding a specialist MS neurologist sounds good, even if you just ask one to look at the MRI that's already been done, to begin with. As a point of interest, when I was being diagnosed, I had a few different MRI's done, in varying standards of quality. They never found conclusive evidence of brain lesions, in any of the 3 or4 brain ones done. There 'appeared' to be a 'suggestion' of minor lesions. In the end, I was diagnosed from my lumbar puncture sample results being positive and there being a series of large lesions, in a line, pretty much joining up, slightly coiled round my cervical (neck) spinal cord
    • wendy80842
      wendy80842

      Posted

      Sorry, I hit the reply bar too soon. I meant to go on... Bear in mind, due to the nature of relapsing/remitting MS, there can be periods of recovery, while in remission. This means that it's possible to get negative results from either LP's or MRI's, so it can take plenty of time to get a diagnosis, without having to deal with dismissive Dr's too
  • wendy80842
    wendy80842 BeausMomma

    Posted

    Sorry to post again, but, isn't it possible to get some kind of pain meds/management? Might you be able to get a referral to some sort of pain clinic?

    Apart from having the National Health Service, in the UK, we're also lucky enough to be prescribed pain meds, as and when we need them. I've been told, by other Americans and Canadians, that Dr's over there, don't tend to distinguish between addiction and medical dependency

    • wendy80842
      wendy80842

      Posted

      I've done it again... I was just going to say: I know that the US has amazing hospitals and cutting edge medicine, but, sadly for anyone dealing with chronic pain, or who doesn't have particularly extensive health care coverage, it's got to be very hard to deal with long term health problems.
    • BeausMomma
      BeausMomma wendy80842

      Posted

      Do you think it's even worth it to go for the spinal MRI for this neurologist? Just go to the rheumatologist? Find an MS Specialist neurologist?
    • wendy80842
      wendy80842 BeausMomma

      Posted

      If I were you, I'd give the neurologist you saw a VERY wide berth, avoid him at all costs.perhaps, if you can manage it, find a DIFFERENT neuro and see if he/she thinks you should have your (typically) upper spine MRI'd, as you've been referred to a neurologist BY a rheumatologist already, it seems more likely that it's where you need PROPER assessment, by someone who gives a rat's a$$ about his/her patients.
    • Oddity
      Oddity BeausMomma

      Posted

      The first neuro I saw was fairly incompetent now that I have had time to look back at it and with all the knowledge I have now.  The second neuro I saw was not an MS specialist.  While he/she was a good neurologist I don't think he/she wanted to deal with my issues.  Then he/she sent me to get the wrong type of MRI of my brain in a .7T machine.  They also submitted the wrong diagnosis codes for blood test I had done and the insurance company sent me a bill for almost $4k.  It took many a few hours and many phone calls to get that resolved.  At that point I found an MS specialist at the Cleveland Clinic and got the first neuro I saw to give me a referal.  So far the MS specialist has been very thorough.  So I guess I am telling you to seek out an MS specialist.  I have considered seeing a Rheumy as well.  Guess it could never hurt other than the pocket book. 
    • wendy80842
      wendy80842 Oddity

      Posted

      I also had the wrong MRI done, first time around, in an MRI that didn't take the appropriate type of scans. I was also in the position of not having been identified as having a neurological condition.
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