Waiting for diagnosis

I am 49 and have felt like I have slowly been going insane for last 22 Years. I have it just been referred for MRI and to see neurologist to Investigate symptoms have been intermittent over the years . 22 years ago I started getting severe dizzy spells and backing out. I came round with no use of right hand. It did come back but with reduced grip and I had complete remission during pregnancy followed by severe neck a few months after giving birth. Dizzy spells still ongoing. So through the years since I have been diagnosed with fibromyalgia, unexplained paryial hearing loss in one ear, water I fectiins so severe they thougt it was cancer at one point,spinal stenosis, I have constant pins and needles now in left leg, and right foot and to going in both hands. Numbness in left calf. My left arm went by b about two months ago for a week, no diagnosis? My left eye went from 100% vision to extreme shirt sighted in matter if months. Blurred vision often. Blood pressure averages now 88/55. Blacked out in may. Couldn’t walk whilst on holiday in August as left leg just went into soadmsy and cramps for five days, I was in I tense heat. My toes go into spasms on an evening regularly. I have had severe muscle spasms in back. Last one last year and had to have steroid I hection to get rid. I have brain fog and forget my words. But this symptoms cone and go but are now more frequent. What else could it be? Had blood tests and everything else came back fine.

hello goinginsane

the intense heat bringing on worsening of symptoms sounds very familiar.

after being referred to a neurologist i went on holiday to greece.

a beautiful country but oh man! the heat!!

i had a desperate craving for watermelon so walked the 100 yards to a local shop.

all well but walking back i got lost!

walking round in circles, wanting to sit on the floor and cry.

my legs wanted to give up on me.

i know now that it was a massive relapse.

in fact it was what led to my diagnosis.

just remembering it has made me afraid to get up to make a cuppa!

write down every strange symptom you have had in chronological order, saying if they improved/got worse.

this information will help the neuro.

good luck

carole (beeninsaneforyears) x

Hi Goinginsane

As Carole said, write down all your symptoms over the years in advance of seeng the neurologist. A sort of timeline is helpful. So it’ll be a case of cast your mind back as far as possible, note when symptoms began and how long they lasted. Include anything that completely went back to ‘normal’ as well as anything that you gradually got used to and maybe compensated for.

Obviously, it still might not be MS. In particular I’m thinking that extremely low blood pressure doesn’t sound like it has a neurological cause (although I’m not a doctor, so I don’t really know). Is your GP thinking about anything except neurological problems, do you know? Have you had blood tests to rule out vitamin deficiencies, especially B12 and D? I know you said you’d had blood tests, but what for?

There are other diagnoses that look from the outset very much like MS, so don’t decide for yourself that it’s what you’ve had for 22 years. It may be something else.

Best of luck.

Sue (completelybonkersforalongtime)