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 .
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 .
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