limboland, diagnosis maze, not feeling strong…all of the above

Home Forums Newly Diagnosed and ‘Limboland’ limboland, diagnosis maze, not feeling strong…all of the above

Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
  • March 10, 2012 at 5:01 am #6510


    But most of all, feeling dismissed and ignored! I am in the process of ‘waiting’to see what happens to indicate if I have MS or not. In May of 2010 I went to a neurologist with a shooting pain in my mouth that was triggered by eating and washing my face ie: trigeminal neuralgia. I had evoked potentials done and they were ok. Then, An MRI of my brain showed two lesions in my brainstem with one of them being active. (My previous brief episodes of dizziness and walking to the left were chalked up to stress by my GP and Ear Doctor – I also had Bell’s Palsy in my late 20’s and juvenile rheumatoid arthritis when I was very young. That is gone now.)

    In Sept. of 2010 my neuro said that he felt it was early stages of MS and I should go on meds as well as have a follow up MRI to see if the lesion was now inactive. I did all of my research on meds and was ready to go on Avonex when I went back to find out that the MRI showed activity again in the same lesion and a brain tumour was suspected. (This result, by the way, had been sitting in his file for over a month without me being notified!)

    I am a 42 year old mother of an 8 and 10 year old, so this of course terrified me for them as well as myself. Even so, somewhere in the back of my mind, it just didn’t feel like a tumour was the case.

    More tests showed demylenation and not a tumour. Phew.

    I went to a highly respected MS neurologist in T.O. for a second opinion and he said that it was too soon to call it MS. Previous to that, I had also had my first ‘attack’ of symptoms that included slurred speech and very unsteady walking as well as fatigue. This lasted for a couple of weeks, but not severe enough for me to need steroids or a visit to the MS clinic. This still didn’t qualify for a diagnosis.

    I asked for a spinal tap in order to do my due diligence and put my mind at ease, but it came back clean. I know I should have been happy, but I just wanted them to find a little something to prove that I am not crazy and am really going through these things! Lyme disease, lupus, cancer etc…have been ruled out which is also good, but I still have no answers.

    Since that time I have had a more severe attack of trigeminal neuralgia, as well as having an episode lasting for a month of my arms and legs feeling very heavy and like they were falling asleep and extreme fatigue. It’s much better, but I have lasting feelings of my left side feeling weaker. Or, at least, I feel like my left side muscles have to work harder and get tired easier for very normal activities that do not seem to effect my right side. it has been 3 months now.

    My ‘problem’, so to speak, is that I can still function, can still feel everything during the doctor’s tests, walk without a limp etc. But the fact is, I know that something isn’t right and I can feel the weakness. I say that with much guilt because I know that so many of you would love to have that so called, ‘problem’ and are experiencing symptoms so much worse than mine.

    It is for that reason that I believe my doctor’s don’t really give my situation the attention it deserves, likely because they have seen so much worse. The MS neurologist literally told me so.

    There aren’t significant changes in my brain MRI, but it shows activity. I have had a spinal MRI over a month ago, but both Neurologists are away, and I have heard nothing back. Normally, I would think no news is good news, but , I have had such a hard time with both doctors, misplacing MRI requests, not getting back to me on appointments, referrals that never materialize etc., that i don’t feel confident that either of them have even looked at the results.

    Yesterday, I experienced a very strange feeling while driving that I haven’t felt for a very long time. It’s happened before, but not this severe. I’m driving along fine when all of a sudden the lights ahead of me seem very bright and I have to squint, and everything around me feels very unsteady. I have to concentrate very hard on driving properly because I feel so detached and almost powerless over my body as my brain seems to have trouble processing all the things going on around me. I have since felt very tired, and feel like I’m a little bit slower doing everything. Definite brain fog. I also had an experience at the grocery store the other day where I just became overwhelmingly tired, was sighing alot, and just had trouble processing all the things I was looking at while walking down the isle. I feel a little crazy as i describe these things. I hope that someone out there can relate to what I am going through.

    The long and the short of it is, both my neurologist are away and I can’t get to see them for a few months and I’m at the point where I feel like, why bother? They always try attribute things to my age, weight, hormones, a virus, They don’t seem to realize that this is impacting my life and that I have had many more symptoms and relapses within the past 2 years than ever before, even if the tests aren’t showing anything.

    I feel like asking my GP to refer me to someone else, however, I’m concerned that this will only muddy the waters more. I know that I have a highly respected MS specialist seeing me, however, he is only in the office 1x a week, frequently away ill or on a conference, therefore, my appointments often get cancelled and just basically at the end of his carreer. The neurologist who was ready to put me on meds, has now deferred to the specialist because of his reputation and calls my new symptoms just variations of the old ones. However, they feel new to me,and are definately more severe.

    I used to take meticulous notes of my symptoms, but, now I don’t even bother because neither doctor really looked at the documents I provided.

    So there, I’ve had a chance to vent a give an overview of my experience. Maybe I do or don’t have MS, I just don’t know. But I feel like no one is trying to figure out what else it could be if it’s not MS after all. I’m hoping that someone else out there has had similar symptoms,experiences and can give me some insight.

    March 10, 2012 at 6:40 am #7068


    I feel for you. The whole diagnositic process can be long and frustrating, especially since there is no difinitive test for MS. It sounds like you’ve been through alot of tests they use to compile evidence of MS and they’ve come up empty. They usually do rule out Lyme, lupis, HIV, etc. like you said. Sometimes the diagnosis comes after everything else has been ruled out.

    It took me 7 years of insisting something was wrong and then an accident and fall out from that that led to severe MS symptoms finally prompting my GP (who is no longer my GP) to listen to me and send me to a neuro, who diagnosed me. I had to go through all the testing twice to be sure and to rule out a more serious disease that is somewhat like MS. Even when the neuro is 99.99% sure, there’s still a process to go through.

    Part of what was confusing in terms of the diagnosis is that I didn’t present like most people do-most people are diagnosed after a bout of optic neuritis. I’ve *touch wood* never had that because my lesion damage is limited to my spinal cord.

    It is frustrating to know something’s not right and not know what. I hope that somehow someone will make the connection for you, one way or the other and figure out just what is happening to you and why.

    March 12, 2012 at 7:47 am #7069


    I am sorry to hear you are going through the medical maize that most of us deal with in some way or another. I think its ironic that the medical system puts more stress on the people who need to use it the most….You know what you are experiencing and I hope that you find a neuro who can help you figure out what is going on.

    My diagnosis took a year and I did not know what was going on—they thought it was a spinal issue since I was experiencing numbness. I passed all the neurological testing and I was fully functional during the numb stages. When my GP finally said –she wasn’t sure it was a spine structural issue, I pressed for a second opinion and she was willing to accommodate (thankfully with no argument). I was diagnosed with little/no further testing beyond my symptoms and MRI. I am guessing that each doctor proceeds differently in the diagnosis process–being diagnosed early is the best if one wants to take the medications (in terms of effectiveness).

    I can totally relate to the frustration with a neurologist—keep pushing, you deserve to know what is affecting your life.

Viewing 3 posts - 1 through 3 (of 3 total)

You must be logged in to reply to this topic.