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Unsure what to do

I was diagnosed with Transverse Myelitis last April by my neurologist. He felt there was no need for treatment at that time but told me if symptoms got worse in one year I was to go see him again.

He did tell me face to face and in writing it’s likely to turn into MS in later life. Of course this devastated me.

Luckily I have a very supportive partner to help me through the journey.

So for some time all symptoms disappeared, but for last month everything has been starting again and worse than last time along with knee problems.

i had numb fingers to start which then turned into painful joints in the right hands fingers. Then last week my feet went completely numb the other hands finger joints have started to become painful with the first hands fingers pain becoming worse.

Then my legs have felt heavier and my hips and legs are going numb now too.

About a month ago my gp put me on gabapentin to help with neuropathy but this has made no difference as you can read above.

My GP can’t see me until 18th July and it’s really getting to me. My mum told me to go to a&e but I’d feel an idiot going for these reasons

Any advice I would appreciate

Hello Sarah,

I’m sorry your symptoms have come back. The only suggestion I can make is to ask for a telephone consult with your GP and ask for a referral back to the consultant and or ring the neurologists sectary and ask how to be seen again.

Can you make on line booking with your GP? If so sit on your computer at about 8.30 in the morning as they quite often release on the day apts,.

Hello Sarah

I agree with Horsemad, get some advice from your GP. However, if your symptoms get very bad, eg, if you start falling or finding your legs won’t hold you up, then consider going to A&E. Think about it as a safety net. If you need that net to catch you, then use it.

Otherwise, 18th July is just 2 weeks away. And if you can cope with the symptoms until then, then at that point you’ll probably have a longer wait anyway as the neurologist will probably want to do an MRI and maybe other tests.

It’s an absolute bugger having neurological symptoms that are just waiting for someone to stick a label on that you don’t want, but would be somehow relieved to get.

And waiting for diagnosis or otherwise of MS is a very uncomfortable place to be.

Sue

Thank you to the both of you. I just get so frustrated lately and get angry at myself when I have spasms and drop things.

I agree sue, it is uncomfortable I’m terrified of that future day whenever it is and I don’t completely understand it all but I don’t wanna jump into reading about it all as I don’t wanna ever panic or scare myself enough than what is needed

Hi Sarah

I think you’re being very sensible. Jumping into diagnosis before the neurologist has actually said the words would probably worry you more.

The really positive thing about possibly getting the diagnosis is the availability of so many disease modifying drugs nowadays. In actual fact, supposing you are now diagnosed with relapsing remitting MS, you’ll be able to start a DMD that will hopefully stave off further relapses and reduce the chances of disability.

Sue