Page 1 of 5 123 ... LastLast
Results 1 to 10 of 42

Thread: Not diagnosed but concerned

  1. #1
    Forum Member
    Join Date
    Jan 2018
    Posts
    36

    Not diagnosed but concerned

    Hi s to all on here.

    I am at present without a diagnosis as such ,i have had so many varied symptoms but all i seem to get told is that i am suffering from anxiety which is ridiculous as i have worked all my life and in challenging jobs so being anxious would not fit .

    This all started for me on Christmas day 2016 when i awoke and said to wife oh got a pain in lower back ,didnt think a lot of it at time as done a physical job , within a week i was in A&E as just didnt feel right , usual tests ,xrays etc and told possibly muscoskeletal and any problems come back ,well i was back twice by end of month but with added symptom of left sided chest pain too ,had CT scan should degenrative arthritis in lower spine but nothing else, was put forward to have an endoscopy which i had mid FEB showed Hiatus Hernia and Mild Gastritis , i amended my diet accordingly but noticed no difference and more symptoms including severe headaches , hot/cold feeling back of neck and just generally a feeling of being out of synch but unable to work out why.

    In April i noticed twitching on left calf and also in abdomen , went and saw GP who done a referral to see a Neurologist , within a week i was sat in front of a Neurologist (who had an attitude problem) she put me through a full Clinical exam ,tiptoes/heels etc and said i was fine and nothing Neurological was evident but would get me to have an MRI of head done ,this was done and was clean and i was discharged from her care, however symptoms persisted and i then started getting very breathless (elephant sitting on chest) and would go out for walks and end up going to ground , was found a few times like this and on each occasion was told i was very Pale, was taken to A&E in ambulance a few times but nothing was found and no answers given , i also felt like my left side leg/arm felt weaker than right but hard to be sure as right handed.

    Fast forward to July back to GP who was not happy and referred me back to Neurologist , saw same one and again she put me through a full MOT /Clinical test and again told me nothing Neurological going on ,I asked if could have and EMG and Lung Function tests done , she was hesitant but agreed for my reassurance (her words) , had EMG first which picked up fasiculations in Legs and left arm and also pointed to a problem with Ulnar nerve (reassuring!) then Lung function tests received letter from Neurologist to say slightly elevated KCO and she had referred back to Respitory dept and they would be in touch , well i then got an appointment to see Neuro again early September and went there thinking she would have some answers for me but what i got was her basically saying it was all in my head and that i needed to see a Psychiatrist !, I could'nt believe her attitude towards me , and with that i was discharged again from her Care .

    She had discharged me before she had heard back from Respitory dept too , i chased this up and received a letter eventually saying my Lung function tests were all normal even though i had a letter from Neurologist saying KCO was elevated , by now also i had noticed also that my left ankle /bottom of left calf was thinner than right and also felt weakness on left side appeared worse , I went back to GP and he was fuming and said going for 2nd opinion as i had very real symptoms , I got my appointment but wasnt going to be until Mid January 2018 and we were still in September , i wondered how i would be by then ,subsequently had a couple more collapses and ended up back in hospital where again the Anxiety issue was thrown at me and i was asked questions like'Are you from a broken home and did you have a happy childhood?' ,I just could not believe that even though i had these very real symptoms that was the best they could come up with.

    Enough was enough so i decided couldnt wait until January appointment so going Private , saw a Consultant end of November (Old school Professor type) he had me marching up and down corridor ,done various strength exercises and diagnosed me with Functional Neurological Disorder , he said he could not see atrophy on my leg but did agree was thinner than right leg , he catergorically ruled out MND and said i was a very strong man , I was again in limbo land , he then said would like to see me again just before Christmas , by this stage i had noticed that now my left hand appeared smaller than right and muscle between thumb and index finger looked thinner than right , I asked him about this and he done strength tests on my fingers and said they were fine , i have measured both hands and there is a 1/4 in difference in circumference , i asked him if i could have another EMG and Lung function tests done again which he has agreed to ,I have my EMG next Monday and Lung Function tests week after.

    It has been the most traumatic year i have known and i still do not know what is wrong -my Symptoms as of today are twitching all over but left calf constantly , breathless upon exertion, left arm/hand and left leg paler than right side, internal tremor feeling , left ankle foot thinner than right, pain in left wrist /back of hand ,malaise/fatigue ,Insomnia and so far been told my main symptom is anxiety and then FND diagnosis from Private Neurologist.

    I am lost in Limboland but feel like i am getting worse and i cannot get my head around how i was such an active outhere chap who loved his job has now become so nervous about going out -even to local shop for fear of collapse .

  2. #2
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    405
    Hi Andy,

    Blimey, that is a story and a half.

    Sorry to hear it is the same for me, going from a bloke who was strong as a horse to having bits of me not working properly, has been a real challenge.

    From your report that neurologist sounds if she was less than helpful.

    I know motor neurone disease is really difficult to diagnose as it involves a series of possibilities concerning observation of the patient, rather than anything that is on its own proof positive.

    And it is interesting that your private consultation bod saw the difference in size but did not think the fasiculation was an issue?

    Where in the country are you?

    Folk in this forum, probably know who are the motor neurone disease specialists amongst neurologists - as I say it is a funny disease in that it consists of a number of things that look the same and are caused by different problem, together with a number of things that look different, but caused in the same way - so you really need to find somebody who has real experience of MND, and even then it may be some time before you get a definitive diagnosis.

  3. #3
    Forum Member
    Join Date
    Jan 2018
    Posts
    36
    Quote Originally Posted by nunhead_man View Post
    Hi Andy,

    Blimey, that is a story and a half.

    Sorry to hear it is the same for me, going from a bloke who was strong as a horse to having bits of me not working properly, has been a real challenge.

    From your report that neurologist sounds if she was less than helpful.

    I know motor neurone disease is really difficult to diagnose as it involves a series of possibilities concerning observation of the patient, rather than anything that is on its own proof positive.

    And it is interesting that your private consultation bod saw the difference in size but did not think the fasiculation was an issue?

    Where in the country are you?

    Folk in this forum, probably know who are the motor neurone disease specialists amongst neurologists - as I say it is a funny disease in that it consists of a number of things that look the same and are caused by different problem, together with a number of things that look different, but caused in the same way - so you really need to find somebody who has real experience of MND, and even then it may be some time before you get a definitive diagnosis.
    Am on the South Coast near Portsmouth

  4. #4
    Forum Member
    Join Date
    Jan 2018
    Posts
    36
    Must point out that both Neuro's i have seen have said Benign Fasiculations and also the Neurophysiologist who done my EMG said same

  5. #5
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    405
    Hi again,

    Ah! New information.

    That does not really sound like motor neurone disease, but I am sure somebody else here who knows more than I do will be along in a minute to say something.

  6. #6
    Forum Member
    Join Date
    Jan 2018
    Posts
    36
    I have some of the symptoms but know others are not -the paleness of limbs being one such symptom ,also the collapses when i run out of breathe,Thanks for your reply

  7. #7
    Forum Member
    Join Date
    Jan 2018
    Posts
    36
    Do not think i have been so nervous as EMG tomorrow -fearing the worst

  8. #8
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    405
    Just wondering if there is any more news from you Andy ?
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  9. #9
    Forum Member
    Join Date
    Jan 2018
    Posts
    36
    OK so it is over a year since i initially posted on the Forums and i am still none the wiser as to what is going on with me however my symptoms seem to be progressive and picking up speed .

    To bring up to date ,I saw a Neuromuscular specialist in May last year ,he was adamant i did not have MND and that all my symptoms were related to problems with my spine (Degenrative disc disease,Stenosis, compressed nerves) my symptoms being Fasciculations , Fatigue,Breathlessness ,muscle loss (left leg /arm/hand) and said would refer me to a spine specialist .I waited for appointment taking into account NHS wait times but my symptoms persisted and seemed to be progressing so at end of July decided couldnt wait for NHS so went Private(2nd time) Neurologist i saw confirmed i had atrophy in left leg (ankle/calf area) i had first noticed this July 2017(year earlier) ,he felt i could have sleep apnea based on my size and symptoms(breathless /fatigue) but to me didnt explain muscle loss at all , he diagnosed me with Benign Fasciculation syndrome and also Cramp Fasciculation syndrome and organised for me to have some tests done , I had another EMG done in August which picked up chronic neurogenic changes in my left leg but the technician put this down to spine related problems (again) .Anyway had a sleep study done and was initially told i had SA and was issued with a CPAP machine .I went for a follow up appt with Sleep Specialist at start of January who looked at my results and said i do not have SA !!!!! and that all my symptoms point to a neurological issue.

    I have been referred by Sleep specialist back to the Neurologist (whom i saw Privately) but under NHS and due to see him in 3 weeks time.As of today my symptoms are Muscle loss on left leg from ankle to above knee (1/2 to 3/4 inch compared to right) pain in right hip/pelvic area , Fasiculations all over ,left arm thinner than right also left hand smaller too , fatigued , breathless (still) worse laying down,back pain , internal tremor , sneezing all the time , frequent urination ,fingers and toes move all the time -i cannot get it out of my head that this can only point to it being MND .

    I have spoken to MND association several times about my progression of symptoms ( I am 26 months from when it started) and i have had fasiculations now for 22 months , I have been told that by now something should have failed but i am not sure -sorry its a long post (again) but i am still down the rabbit hole with no answers

    Thank you for taking time to read this .

    Andy

  10. #10
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,410
    Quote Originally Posted by AndyM View Post
    ... i cannot get it out of my head that this can only point to it being MND.

    I have spoken to MND association several times about my progression of symptoms... I have been told that by now something should have failed but i am not sure...
    Hi Andy,

    I am genuinely sorry you are still having issues.

    I really don't know if anyone can give you the reassurance you want - you don't get assurances from Neurologists, Neurophysiologists or trained people from the MNDA Helpline, so I doubt if anything I say will change your mindset. But here goes...

    What were your latest EMG findings, apart from chronic "neurogenic" changes (they're normally more specific than this) You have had multiple EMGs and each diagnosed BFS.

    Given your explicit symptoms, yes, you would have had functionality failure by now.

    It's best to get ALS out of your mind and focus on working with your Dr.

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •