Awaiting tests, nervous.

I’ve a few questions….
I’m 31, for years I’ve had random aches, pains, fatigue and numbness in limbs, migraine aura without headaches etc, I’ve been treated for vertigo about 5 times in the past 2 year.

I was diagnosed with AS (ankylosing spondlyitis) in 2020 after almost 8 years of being back and forth to doctors, i had an MRI of my spine but only up till the thoracic spine as I was too claustrophobic and freaked out so they never seen anything above my shoulders. They found several areas of inflammation and sclerosis on my thoracic spine, other than that some damage to my hip joints.

Gave me biologic medication and sent me on my way…

Anywho.

The symptoms were put down to my AS but the past maybe 6 month, move had episodes where I feel weak, I’m SO exhausted, the eye shakiness is back, the weird numb left arm that doesn’t feel like mine, tingly lips, the list goes on. Can last from a day or two to a week, then goes away! But always comes back?

Went to docs and they’ve put in a referral for neurologist as I had a positive babinski test? And my reflexes were ridiculous quick (I dunno if that means anything) he was only a GP so couldn’t say much. But he did say symptoms sound like Ms.

My dad has Parkinson’s disease, was diagnosed young in his 40, as did my Nanna.

I know some MS and Parkinson’s symptoms are very similar. But I’ve no tremors at all.

Basically my questions are

  • were you diagnosed with something else first?
  • how long did you wait to see a neurologist?
  • how were you diagnosed?

I’m so scared, my AS can wipe me out most days anyway and I’ve two little
Boys. I’m so exhausted and so depressed. I’m terrified of the outcome.

Hi welcome.

Good that you have been referred to a neurologist, and hopefully they will be able to cast some light on your symptoms.

As for your questions - some get the right diagnosis first time, some get the wrong diagnosis and eventually get the right diagnosis. Some are still awaiting diagnosis!

Waits to see an NHS neurologist are very variable between areas. Can be very many months in some areas. Some get seen much sooner. Hope you are in one of the better areas.

Most will have beeen diagnosed based on all of the following : symptoms, physical signs, MRI scans and lumbar puncture results. The latter two being the most important to get a diagnosis.