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New and help because I give up now

Hi all thanks for reading.

i would appreciate your advise on what’s best to do next or shall I just give up?

history:

sudden vision loss and right sided paralysis 4 years ago that came and went over several months and then left with some mild permenant vision loss and some very mild right sided wealness​. Nothing on MRI’s, confirmed weakness at time and confirmed vision loss

Intermittent worsening right sided weakness, numbness and tingling face, forearm and lower leg, all right side. Mild weakness found my physio but GP says no weakness

Jan this year, worsening of symptoms above, plus loss of balance, breathing difficulties, problems with eye sight but different this time. Intermittent episodes, very severe some days that I have to use a stick to not fall over and it’s been difficult to walk and drive with the numbness. Double vision as well, also intermittent. Admitted into hospital after new right sided numbness and weakness, mri brain clear. Further more detailed MRI, clear.

Saw neurologist 2 weeks ago and I’m no longer getting the above symptoms and have been left with no balance and a new numb patch on my belly. He says he doesn’t know what’s wrong and again because my MRI is clear they are not worried.

this all seems like MS to me. I’m frustrated because I always see GP or neurologists etc usually on a good day. My physio and the episode where I was admitted, seems to be being ignored as they confirmed there was weakness.

what else do I do or say? Am I expected to wait until this very mild weakness becomes visible because it’s daily or has worsened before they take it seriously

I feel like I need an advocate at these appts because they just seem so dismissive

your gp is the one who can help you by referring you to specialists.

the neuro has said it isn’t ms and i assume it isn’t another neurological issue.

but there is something obviously badly wrong.

perhaps your gp could ask the neuro for his best guess.

my gp was wonderful when i was going through diagnosis.

i would say not to give up.

this is having a serious impact on your quality of life.

let us know how you get on.

Thanks for your reply Carole

they haven’t said it isn’t MS. They have said they don’t know what it is and are almost implying that I need it to get worse before they can actually decide how to treat it

ive kind of been left in limbo? But because I seem to have these relapses and then almost completely recover, it seems like MS to me.

Going through the forums I see some people get the lesions on their spines instead. I didn’t know this and I’ve never had a scan of my spine, only the brain

if anyone has been through similar and had an alternative diagnosis to MS or you have been through similar and a diagnosis has taken a long time to be made, I’d be really interested to hear your stories

thanks

keep on seeing your gp with your symptoms, if and when they change.

this way the full story will be on your medical records.

hope you get more replies

Hello Polly

There are certain signs that a neurologist can see on a physical examination that would indicate whether or not it could be MS. The fact that the neuro hasn’t mentioned MS nor requested a spinal MRI, together with your clear brain MRIs seems to indicate that it is not MS.

Having said that, as Carole said, clearly you have something going on, so should continue to chase up. Probably with your GPs help.

Best of luck.

Sue

You may have remitting remission ms. I do. When I have symptoms my mri shines up with “white hypersensitivities “ in multiple places and when I have no symptoms nothing shows up. Your immune system may be attacking the myelin ( you get symptoms) the recovering ( no symptoms). Push them. The squeaky wheel gets the oil.