Help - Advice needed please


#1

Bit of a long post, will try and keep it as direct as i can.

I was diagnosed with ME/CFS a couple of year back because of pain and fatigue (I was under investigation for MS originally)

 

My symptoms are

Fatigue

SEVER Back pain , neck pain and leg pain ( I walk with a crutch) with sometimes but not always short steps

A very very pronounced stoop

Mind fog/unable to get my words out

Migraines, dizziness that causes falls , choking on food and sometimes a brief tremor in my fingers, mouth or legs (rarely for a long time)

In work (when i could) we used to joke "This is my happy face" this is my angry face "(While having the same expression)

Icy cold hands and feet.

(there more but thats just setting up)

Symptoms including the tremor get MUCH worse when stressed and cold.

My History is

 

  • At 2 i had a very nasty accident on my bike, i hit a tree at a very high speed (it was down hill), I bannged my head and was knocked out, i was never check over medically.
  • at 3 I choked on food , so bad i went blue, i developed a eating disorder that took me over 20 years to shake (even now im fussy)
  • I was very ill as a child, always picking up stuff and taking an AGE to shake it
  • at 15 i had a bad cycling accident and again a head trauma (no helmet)
  • I was then in a abusive relationship where i was physically beaten up , again with head issues
  • at 29 I was a semi pro cyclist and suffered a horrendous accident , i was cycling at 25 mph and i was hit by a van at 30 mph, i didnt have a helmet on, i flew over 10 foot into the air and i landed HEAD FIRST onto the road, was ko'ed and taken to hospital, despite clear head injures and symptoms (being sick , upset etc) i was never scanned.
  • Between 20-35 i choke on food at  least once a month, a few times very very seriously to the point of almost passing out.

I went to my GP last year with the aim of talking about all the above and saying that I believe its parkinsons and not ME/CFS, my Gp said "only Muhammad Ali and boxers with head trauma can get Parkinson" and that was it, it was over, i was relieved and TOTALLY forgot about it , until last weekend , when i noticed i kept biting my lip when chewing , in the same place, harder and hard, so i googled it and up came Parkinsons again.

 

So was my GP Right? am i just letting my mind run away with me ? or could i be right?

Im a 37 year old man BTW

 


#2

 

Hi

I'm no doctor,so cant really give you an answer that a doctor can but it sounds like they went for 'auto immune' route originally  with the me/cfs did they consider ''sjogrens disease'' at that time of diagnosis, only it can display some parkinson like features.


#3

No, they literally did an MRI - "Its not MS, so its ME/CFS bye" ive had nothing since, that was 2 years ago.

 

 

Do you think the above then ISNT parkinsons?


#4

 

I'm in no way qualified to say what and what it isn't toglife  only a specialist can do that i'm afraid i realise you are looking for answers and its stressful , there are symptoms that 'fit 'parkinsons but there is also symptoms that could fit other illness's like srjogrens for instance.

If you feel wrongly diagnosed and suspect so then please do seek advice if not from one gp then another,as ultimately you'd be referred & passed on to a neurologist if PD is a suggestion.

it can be a short or long wait too get a answer with blood test's & scans like a mri to discount other causes as im sure your aware.