In Limbo and feeling scared

[Peanuts]

I've had symptoms for about a year I'm not going to list them but just say that at present my main symptoms are breathlessness, fatigue, fascinations/spasms and nerve/joint pain which do seem to be getting worse and have affected my mobility.

We went through thinking it was physiological until It got more physical and I was sent for an MRI to rule out MS etc.
That was in late spring I wasn't very happy with the original neurologist so we went private and the second neurologist decided to do further tests an EMG and heart ECG.

So in between these tests I was diagnosed with ME and Fybromyagia (if no other cause is found) as my go also referred me to the cfs centre, feeling quite confident that this was my diagnosis and coming to terms with it in an upbeat positive way. Today I was then pretty shocked and taken back when the neurologist told me my EMG was NOT normal and I do have a muscle disorder and it defiantly is not ME/Fybromyagia.

He can't tell be what that is but having had a stupid amount of blood tests and various other tests my narrowing down seems to be pointing me to the one thing I've had as a small nic in the back of my head that I've been completely ignoring to more of a reality that I could be facing.

I hope to dear god I'm jumping the gun but I really would like to hear some 'real experiences' of early diagnosis symptoms. I'm only 32 and have two children at home I want to prepare myself mentally incase this is a reality that I might be facing.

 

[Peanuts]

Forgot to mention my next course of tests are:

More bloods,
A muscle biopsy
An MRI of my limbs

I've been referred to a respiratory clinic also to help with the breathing difficulties.

Really frustrated would love an indication of what it is but my neurologist is not letting on just stating a muscle disorder that we need to get to the bottom of

 

[Nikki J]

If they are doing a muscle biopsy seems like they are looking more at a muscle disease than a motor neuron disease. Muscle biopsy is not usual in diagnosing ALS/MND. Did ypu ask point blank if they were
Leaning toward an MND?

 

[skipper66]

How soon are they going to be doing the other tests for you? Please don't jump to conclusions that it's ALS. There are alot of other things that could be going on with you. Have you point blank asked the Dr. what he is looking to rule out? I can certainly understand your frustration. Please try to get your mind off of things until you get your tests back. Best of luck to you.

 

[Peanuts]

No I didn't ask a lot as tbh I was in shock it's not down to Fybromyagia and was expecting him to sign me off. Just got home and headed off to dr google! I know he was concerned about the breathlessness in particular which lead me down this path.
I know at one point he thought it was MG due to my constant eye twitch but it's not really a droop more of a muscle twitch that looks like its intermittently drooping with no other facial signs and the blood work now makes that more unlikely.