Progressing more and more

[Mike001]

Hi all, i've posted a few time and i've got nobody else to turn to for help or guidance. I've tried to go private for further testing instead of thought the NHS, but it's the same neurologist i've seen previously. I've switched GP's now as well. GP says I need to go to a Neuromuscular specialist, but he said only a neurologist can refer me to one and she wont because she said my EMG from 2 years back was clean . I'm going around in circles and I don't feel I have much time to mess around.

I went back down to my GP today and he said I need a repeat EMG as soon as possible, and he can see the muscle wasting and said there's a dramatic change, but it's 11 months wait just to go and see the same neurologist again that won't refer me. There isn't a neuromuscular specialist anywhere local to me that I now of. I live in the UK, Cardiff, in Wales. I don't know if there's any specialists on here, but i know there's a lot of people that has witnessed/gone through the whole diagnosis process and knows what to look for or who I should see.

I have attached more pictures of now my upper body (deltoids) and a few others sites. I have visible muscle wasting that's not symmetrical (at first, until months later) throughout my body. More so my dominant sides. (upper left side, lower right side) I'm left handed and right footed.

Im sorry for the longwinded message and i've tried to break it up. I can't go anywhere for anymore guidance or even to ask what else could actually be causing this other than ALS and I know nobody can diagnose me, but i'm just looking for some sort of help or just anything. I have everything that points to it apart from the main thing of weakness. I haven't noticed any worrying weakness, but then I know weakness is usually gradual. I do know i'm not as strong as I was. (p.s my diet hasn't changed so loss of fat wouldn't be the problem and i've always been thin)

I've attached pictures from 2015 (when i first noticed little twitches and had the burning and itching) to now 2018

 

[Bestfriends14]

Mike, I see nothing in your pictures that looks like atrophy. The reason I say this is because, while you are thin, I can clearly see muscle definition. That is not even in the tiniest bit remotely like atrophy.

You're saying that all together you've had issues for 4 years. Do you know that if you actually had ALS, even the slowest progressing kind, you'd be pretty handicapped right now? You've been posting for three years and you.still.do.not.have.anything.near.to.ALS. Please, for your own mental health, let this obsession with ALS go. It's a fantastic thing that you do not have it.

Take good care and please remember that your questions are posed to people who actually have ALS. Asking the same thing again and again is unfair to their time.

P.S. if mods allow this, I've attached a pic that shows what atrophy looks like. Zero muscle definition.

 

[KarenNWendyn]

Mike, I agree with BFTTE.

Also, even if you do have atrophy, it is not specific for ALS. If you feel you are losing muscle mass, you need a good workup by your primary care doctor, including a search for metabolic conditions, autoimmune disorders, malignancies, chronic infections, and psychiatric illness..

The time course of your symptoms points away from ALS. You say you haven’t noticed any worrisome weakness, and that’s a good thing. People with ALS will have some sort of muscle function failure. It’s great that you don’t!

 

[Mike001]

Thank you for replying. Some of the picture are form 2015 and some are now to show the difference. In my right leg there's no definition, its just like a bag of fluid it feels like now. I really do appreciate you messaging back and my apologies for posting... I'm just getting no help from anyone i'm going to see to even look down an alternative route. I am taking in everything being said and i do again appreciate it. I just know the huge difference from when it all started with me to now.