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Thread: My Mental Illness

  1. #1
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    My Mental Illness

    Hello.
    First post here. I really hope this doesn't upset or offend anyone. I'm going to tell you the story of my mental illness, which is quite involved so don't bother if you have better things to do...

    As a fit and active 48yo male I arranged to see a rheumatologist, in May of this year (2018), to investigate a pain in the region between my right shoulder and neck. Having played a lot of racket sports I assumed this was an overuse injury, muscle knot or maybe arthritis. I'd spent much of the previous 3 years visiting various physios and osteopaths to try and resolve this pain with little success. Temporary relief was obtained when someone dry-needled the trapezius muscle(s) - I can remember that physio remarking on how excessively twitchy some of the muscles were.
    The rheumatologist ordered an MRI scan of the neck. At the follow-up he reported some age-related wear and tear but nothing too sinister. “Go and get some physio and you'll be fine” (well I'd already tried that for 3 years). At this appointment I mentioned some strange issues I had with my legs over the last couple of years. I'd tripped up a few times playing tennis or table tennis and my legs would often feel weak late in the evening. Sometimes I couldn’t get my legs to go where I wanted them. These issues were getting worse and my legs were by now (late May 2018) permanently fatigued and I was unable to participate in any activity except walking and cycling (and much slower than I used to be).

    A scan of the brain and rest of the spine was undertaken. The brain scan had to be repeated because I was moving too much when trying to swallow saliva (thought nothing of this at the time). Again it was "good news". No sign of MS etc. All blood tests were clear, including Lyme’s disease. Was referred on to neurologist.

    First appointment with neurologist was mid-July. By now I had noticed twitching/rippling in the leg muscles and Dr Google diagnosed MND. I told the neuro this but they said nonsense, I didn't look like someone with MND and certainly didn't have it until they said so. A thorough exam revealed no clinical weakness and normal reflexes. First nerve/EMG test was performed and came back clear. Was referred to psychiatrist who diagnosed some kind of psychosomatic anxiety disorder. My calf muscles had begun to noticeably shrink by now and the twitching had spread to other areas of the body. Walking becoming increasingly difficult uphill, but I can still walk slowly on the flat.
    Start seeing the GP for review every couple of weeks with the wife in attendance. They both keep insisting my mind is playing tricks on me and though the symptoms are real they are caused by my brain misbehaving and not an underlying physical disease.

    Mid-September I had a second EMG test. I brought this forward from mid-October because my symptoms were deteriorating rapidly. I'd tried to play table tennis a few weeks earlier (for one final time and as much as my spastic legs would allow) but after 15 minutes effort was struggling to breathe for the following few hours. I no longer have the strength to push anything out of my bowels (prune juice has helped). Weakness was spreading to my arms which now feel tired after driving, cooking etc. Voice gets a bit gurgly after talking.

    During second EMG test neurophysiologist said things looked ok but he'd need to analyse them properly and compare with previous test.

    By now I've started to have problems swallowing and for the first time failed to swallow some food (a piece of cake, literally not metaphorically) - the food just sat there blocking the top of the windpipe until a second swallow got it. Terrifying. GP and wife say it's my mind/health anxiety.

    Met with neurologist last Thursday - I was expecting/hoping/dreading I’d be sent straight to hospital (being unable to reliably swallow food and drink seems pretty serious to me). However neuro says the EMG is clean therefore I can't have MND. No strength or reflexes tested - I need to see the psychiatrist about my swallowing and other problems. They were unconcerned about my disappearing muscles in legs and hands (strangely some muscles have wasted whereas others haven’t so the legs look more toned than before). When I said I can no longer walk uphill I was told to adapt my lifestyle to avoid hills (I was walking 20 miles/day in the mountains of Scotland 12 months ago and now get tired standing up in the shower). I will shortly have to adapt my lifestyle when I can no longer swallow food or drink. Wife obviously very happy with diagnosis and telling everyone I don't have MND, I'm just mad.

    Neuro suggested seeking a second opinion but can't send me to MND clinic as I don't have it.

    So there you go. Two years of the brain tricking my body into showing progressive physical symptoms of a disease I knew nothing about until 4 months ago.

  2. #2
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    Hi My Friend. I have read all of your post and I am "dismayed" by how the neurologist and just about everyone else is treating you. Before I continue, can I tell you that I have just been diagnosed with MND very recently. I am no expert and I have absolutley no authority on the subject, but from your describing, it sound very similar to my own experiences. Somebody needs to take you seriously NOW and help you my friend. If you want to chat on here please do. Take care . Steve

  3. #3
    Forum Member Ellie's Avatar
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    I hope you will work with a Psychologist / Psychiatrist re your anxieties.

    Anxiety can be very debilitating and manifests itself physically, as you have found out.

    With 2 clean EMGs, you do not need to worry about ALS/MND - any issues regarding nerves and signalling is obvious on an EMG, even before muscles begin to fail.

    Best of luck to you.

    Ellie.

  4. #4
    Forum Member Twinkle's Avatar
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    Hope you get everyone sorted, there's nothing worse than toing and froing between consultants, Dr's, hospitals, etc.

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    After the distractions and activities of the weekend a very blue Monday is passing very slowly. So here's the latest in my battle with anxiety (I promise no matter how preposterous this sounds it's entirely true and reported without exaggeration or embellishment):

    Symptoms continue to progress. Meals taking a long time now - simply can't get my jaw muscles to chew the food properly. The feeling of constant fatigue in my legs is spreading elsewhere. When I mention this to the wife she looks at me as if I'm mad (which is in fact true so can't blame her).

    Met with GP last week. She offered to tell me about the end-of-life experience of a previous MND patient. I declined.

    Met with psychologist to discuss psychosomatic disorders, again. This is looking like the most extreme case known to medical science.

    Seeing second neurologist later this week.

    Thank you for tolerating the ramblings of a madman,
    Phil

  6. #6
    Forum Member Marigold's Avatar
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    Hi Phil,
    I can totally understand how scared you are feeling right now! I have certainly been there.
    I can only speak for my own MND and have limited medical knowledge but your symptoms seems to be developing far too rapidly for MND. In my experience, each stage takes time to develop, the symptoms don't all come together and so quickly.
    Im not saying they are not real, just must be something else.
    Try to keep positive, otherwise you will stress yourself into something worse!
    Marigold

  7. #7
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    Quote Originally Posted by haggis View Post
    After the distractions and activities of the weekend a very blue Monday is passing very slowly. So here's the latest in my battle with anxiety (I promise no matter how preposterous this sounds it's entirely true and reported without exaggeration or embellishment):

    Symptoms continue to progress. Meals taking a long time now - simply can't get my jaw muscles to chew the food properly. The feeling of constant fatigue in my legs is spreading elsewhere. When I mention this to the wife she looks at me as if I'm mad (which is in fact true so can't blame her).

    Met with GP last week. She offered to tell me about the end-of-life experience of a previous MND patient. I declined.

    Met with psychologist to discuss psychosomatic disorders, again. This is looking like the most extreme case known to medical science.

    Seeing second neurologist later this week.

    Thank you for tolerating the ramblings of a madman,
    Phil
    I fully understand where you are coming from , I am 22 months into a similar nightmare with shrinking muscles in legs and hands , breathlessness and muscle twitching all over , had numerous consultations 4 Neurologists ,3 EMG's and all have said not MND but can give me no answers as to what is the problem , all i know i is i have gone from being an Outgoing larger than life type of guy who loved his job to a virtual shell of the man i was , I have spoken to MND association several times and they have been really helpful ,the last conversation being last week when i asked how long you could have Fasiculations for before something fails as i have had them in my leg for 18 months and i was told something would have failed by now! Sorry to hear you going through it too but you are not alone

  8. #8
    Forum Member Lynne K's Avatar
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    Andy and Haggis. I hope that you both find a reason or solution soon. Loosing function is no joke whatever the cause. Also remember back pain was seen as psychosomatic years ago. Doctors are clued up more nowadays. Your symptoms could be something not often seen so nobody you've seen so far can help. I find it hard to believe that anybody would will mnd symptoms upon themselves. It would be a seriously troubled person who did that. I'm no psychologist so that's all I can say as an interested observer. Take care. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #9
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    Quote Originally Posted by Lynne K View Post
    Andy and Haggis. I hope that you both find a reason or solution soon. Loosing function is no joke whatever the cause. Also remember back pain was seen as psychosomatic years ago. Doctors are clued up more nowadays. Your symptoms could be something not often seen so nobody you've seen so far can help. I find it hard to believe that anybody would will mnd symptoms upon themselves. It would be a seriously troubled person who did that. I'm no psychologist so that's all I can say as an interested observer. Take care. Lynne
    Thank you Lynne , it has been one long road and two of the four Neurologists i have seen have said I need to see a Psychiatrist as my main symptom is Anxiety !!! -never knew anxiety made your muscles shrink Silly me eh!

  10. #10
    Forum Member Ellie's Avatar
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    Andy,

    Don't underestimate exactly what anxiety can physically do to one's body...

    I am sorry for what you're going through but after 3 EMGs and 4 highly trained Neurologists said you do not have an MND, I would be full of relief if I were you.

    Every one of us with MND on this Forum would have loved to have got that result!

    Continue working with your doctors and get the help you need and deserve so you can start living again. You have been cleared of MND.

    Best wishes,
    Ellie.

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