Hi all. First time poster after 4 months of worry

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highslip87

New member
Joined
Oct 20, 2019
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Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
VI
City
Melbourne
Hi all,

I've read the original post at the top of the page and I know it points away from ALS but I just can't get this feeling out of my head. I've been seeing a psychiatrist to try to get over my anxiety towards an ALS and started on prozac around 1 month ago to assist in my anxiety.

It all started when I noticed a bit of weakness in my right forearm and upon looking at it vs my left (i'm right handed) I realised my left looked a little bigger, although I brake on my bike using my left hand which could be the cause. My brachial muscle on my right forearm was also difficult to flex/contract. My GP agreed there was a difference and sent me to hospital. The hospital discharged me and said come back if anything changes. I went back in when I realised I couldn't push as hard off my 2 toes next to my big toe, I woke up during the night and knew something was off with them and was admitted back in to hospital. I could still curl them but without the same power... 4 months later and that hasn't changed but I now have a bunion growing on my foot because my big toe does so much more work and cramps due to the strain it's under. The brachial muscle on my right forearm is still hard to flex but hasn't changed since the initial realisation that it had changed or was hard to flex.

The neuro at the hospital said my CK levels were 1000 at the time and said something was happening and gave ALS as one of the possibilities. After multiple MRIs, lumbar puncture, blood tests etc I was discharged and went to the neurologists rooms the next day for and EMG and NCS which all game back normal. A week later I went to a specialist in muscular neurology and she also performed an EMG and NCS test in the specific areas/muscles I was feeling weakness in which all came back normal again. My CK levels had also dropped down to 145. My neuro said it was maybe due to the extreme diet I was on at time under the guidance of a naturopath for a bacterial overgrowth in my small intestines that had been causing me stomach pain for a year.

I went on my merry way (relieved to have avoided an ALS diagnosis) and started to enjoy life again and eating normally before I had a work trip and the 'feeling' of weakness spread to my shoulder and I noticed my breathing was more difficult and wasn't helped by anxiety meds nor ventolin. I went to the pulmonologist who did a lung function exam which found a mild obstruction but my MIP was very strong (meaning my diaphragm is working well).

I just had another CK blood test at my GP and levels are raised again, this time at 580. I still have this feeling of weakness in my hand/forearm/shoulder, less dexterity in my right hand and I get aches now in my right arm and leg as I try to stay as active as possible. I ride my bike to work everyday, train at the gym and surf.

I know it has been 4 months and I should have seen more progression if it was anything very serious however I just can't shake this feeling. I also get fasciculations in the arch of my foot now as well as some in my shoulder which have started more recently. I know that can just be stress but I'm having a hard time accepting that it's not something more serious/sinister that is getting worse. I also tried to upgrade my insurance however with no diagnosis I was told it's impossible. So I'm in limbo.

I'm very sorry for all of you that are going through this but thought I would post to see if anyone had experienced anything similar leading up to their diagnosis.

Kind regards,
Sam
 
You read the sticky— good.

Your story is very much consistent with anxiety. The absence of muscle function failure and the normal EMG clear you of ALS. Congratulations.

Please keep working with your psychiatrist.
 
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