So Low and its only the start!

Hi everyone, this is my 1st post. Im not diagnosed as of yet ( waiting for thoracic and brain mri) Just feel like im going a bit crazy, I waited six weeks to see my neuro only to mess it up! I took a long list of my symptoms and promised myself i wouldnt get emotional at the appt, the guy examined me and didnt find anything concrete physically, then asked about my mood. I welled up and said “not great” He then said - my symptoms could be an anxiety problem which antidepressants may help! My symptoms have been quite scary and and have included losing the feeling on left side of face, numb throat difficulty swallowing, numbness/ pins & needles on left side, excruciating eye pain on left side, weakness in arms, urgency urinating, numb back, feeling spaced out, emotional, passage etc etc… I dont want MS but i dont want to feel like a hypochondriac either!

the neuro found nothing untoward from your appointment.

however you have real symptoms and need answers.

see your gp, who should receive the neuro’s written report.

explain how let down you feel and that you need answers.

the gp may consider referring you to a specialist in another area of medicine.

after this if no conclusion is made, s/he may re-refer you to neurology, they cover other conditions as well as ms.

calm yourself down by deep breathing.

inhale for 5 seconds, exhale for at least 8 seconds.

I thought I’d share my diagnosis

3 years ago I went to see a neurologist about tingly legs. He did a few tests (not mri or LP) and “dismissed” me with some drugs. I decided that I wouldn’t take them as I could live with tingly legs.

6 months ago I still had my tingly legs but started dropping things, tripping, and numb fingers and toes so decided I’d go back (I’m very fortunate I can go privately) also discovered I had Lhermitte ie bending neck and symptoms appear

i saw a different neurologist he did his initial examination asked about my symptoms and said I didn’t have ms but decided to do am mri scan of brain and spine plus blood

4 lesions on the brain but wasn’t convinced as I’m 60 and said I it could be wear and tear and on C6 on my spine which also only showed on one plate and therefore could be an anomaly on the scan

still saying it isn’t ms but have a lumbar puncture.

Well low and behold the LP was positive so he then decided my MRI was positive and gave me the diagnosis of RRMS three weeks ago. He was really surprised

I have never had “episodes “ as defined by the neurologist text book. And obviously not presenting as a text book MS patient

it seems to me from reading so much on here that a lot of neurologist seem blinkered by txt book theories. I do realise that they have to be very cautious with their diagnosis but it does seem unfair that they can’t be more open minded and reassuring with their patients.

It sounds like a rant but I do feel strongly that the uncertainty is far worse than the diagnosis and people like you Valentines baby are left in limbo with no one taking you seriously .

Sorry to pipe in because I am not diagnosed with anything yet regarding my tingling left leg and general feeling of weakness on my left side but my GP’s are putting it down to my chronic migraine and prescribing my antidepressants??!!

Gloves - did you have the lhermittes sign from the beginning or did that come on after a while? because I don’t have that although do have stiff neck and left shoulder.

Hope anyone in limbo can get answers soon.

I’m not sure about my lhermittes as I wasn’t looking for it 3 years ago and hadn’t heard of it. It was only when I had read about it I consciously bent my neck, which was about 4 months ago, and experienced the effect.

i have never had l’hermittes and i was diagnosed 10 years ago.

i have been bending my neck since reading this post.

oh well.

now i’m bending my neck back hoping it will do something with my double chin!

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Ah ha thanks for that cat woman Carol thought I needed a neck lift! Will bend it back now.