[Mary]

My story could be yours Lisa I am 2 years with symtoms first 2 emgs showed denervation in fdi muscle in hand then chronic neurogenic changes reduced recruitment in the one muscle its been hell I have seen 4 neurologist all saying that I have anxiety no wonder no confirmed diagnosis have wasting in right hand like yours constant aches and pains had 3rd emg which was apparently normal but still symtoms persist not sure what to do next have burning feelings spend my time analysing how I got this have an idea am based in Dublin seeing neurologist who did supposedly normal emg on Monday but not expecting much I think u have to be wheeled in for a diagnosis

[Mary]

Hi all, by the way I really feel for you mikael as I am going on 18 months nó diagnóis it’s like a living nitemare not knowing what is happening its madness in this day and age u should have to go through all this, I have muscle wastage on right hand and bad pain have been prescribed pregabalin for pain heavy feeling in my legs have had 3 emg abnormalities in fdi muscle with psw and fib in one muscle but 2nd emg no fib or psw but enlarged mups and reduced recruitment 3rd emg not much showing I have no clinical weakness which is main factor I think? I still have prob with hand have mri of hand not much showing and mri of back and neck, I think it’s a real shame when on some sites people r just plain rude or think u r some some of nutcase I think on this site everyone is really supportive and kind, sometimes u just need somewhere to vent I am just going to kerp going i don’t need counsellor as been suggested I just nerd to no what is wrong with my hand sorry for rambling post ?

[Mary]

Yes this i am not sure the first neuro didn’t seem to experienced and she referred the 2nd one when I showed him my hand he said well u don’t have weakness it’s like he was supporting her his report went on about my emotional state more I felt my reflexes etc were all normal he has sent report to professor hence not giving me much time as from report it doesn’t look like I have als but I feel I do I hope professor comes up with something I am so scared

[Mary]

Hi, I just wanted to add to my trying find a diagnosis story! Here I am nearly a year with symtoms wasted muscle on hand now looks on wrist can’t write without pain legs and feet that fill like anti freeze has been injected into them I have now see 3 neurologists and had 2 emgs been to my doctor numerous times given anti anxiety medication offered counselling even though the emg shows abnormality in muscle in hand one neurologist said try physio she recommended the other neuro who doesn’t no what is causing abnormality but doesn’t think ALS even though emg says chronic neurogenic changes slow firing of motor units!! So now a professor has said I can have a quick 15 mins go over concerns as v busy and my proper appt isnt til Jan with another emg it is so stressful what else can it b the I ternet points to ALS so why is is hard so hard I try to live a normal life with my daughter but this is always hanging over my head my fingers on hand are not right and feel dis ordinated ?

[Mary]

Thankyou dagmar, that is so funny reminds me of me with the coconut can’t bear the taste really ?I am glad to have found this forum thankyou

[Mary]

Thankyou for the good advice, the neurologist I see end of month is one of the best she is tied in with als research etc it all seems so daunting I am taking cod liver oil and vit C and b at the moment, I read about someone taking copious amounts of coconut oil and bought same made me heave better as massage oil! Mary

[Mary]

Thanks Jean Pierre for your input hopefully if I am diagnosed it is v slow?

[Mary]

Hi I just joined i haven’t had a definite diagnóis yet appt with 2nd neurologist end of month hoping to no exactly what is going on I am finding it hard to cope all I read on the Internet are horror stories with this illness it scares me I am on my own with a 11 year old daughter how does everyone manage?

[Mary]

Thanks dagmar, I am hoping I will get an answer to my symptoms when I go to the neurologist end of month then I can try and get my head around it all I am not coping with the possibility at the moment ?

[Mary]

Hi everyone, I just joined this site today,  I am at the tests stage although I no in my heart I have ALS it has started in my right hand where I have muscle waste and finding it v hard to write I have been to a neurologist who didn’t think I had ALS had a emg which showed an abnormality in muscle in hand did a spine mri nothing showing so am in limbo I have booked to see another neurologist end May meanwhile both hands cramp up numbness in legs I have heard there needs to b more abnormalities on emg to confirm a diagnosis but neurologist never went through report with me it is v hard at the moment don’t feel I can make any future plans til I no where I am on my own with my 11 year old, the one thing I did prior to all this was start running mayb that was where it started thanks for reading and it is nice to b part of this forum,

[Mary]

Hi Amanda thanks for asking well clinical exam was fine I had my hand looked at the neurologist doesn’t feel it is mnd as I have had 2 emg which show abnormality in just the 1 muscle he said it would b NY now its nearly 8 months more widespread he think I damaged muscle but no answer what to do plus he saw the muscle waste I am abit in limbo do I go to a 3rd neurologist or just leave and get on with life mayb muscle will sort out itself surely 2 neurologist wd pick up by now