partial mylitus

i am at my wits end to be honest i had an episode where all my left side was affected so i was sent for spinal tap,mri etc in around feb last year.they found i had leasions on brain and spine.

now i have seen neorologist who said it was ms and another professional has stated the same yet my ms nurse constantly says its an episode of partial myalitus (prob not spelt it right lol) i have not been able to move the toes at all on my left foot since last year everytime i have mentioned it to anyone its like they take no notice of me.

also my foot gets icey cold and changes colour blue/black, i have had this since last year too. which now i have been told is raynauds which is another auto immune condition , i also suffer tremors full body everyday some days much worse than others and i have read that this is related to ms,parkinsons etc, but my ms nurse said no it’s unrelated ?? it’s a separate thing.i have also read that raynauds can be caused by other health conditions ie auto immune conditions ms etc ??

everytime i see her and tell her whats been going on with myself i feel she just shoots me down and straight away no no thats nothing to do with it .

yet what i am experiencing and what i read up on here and other medical soarses tells me otherwise???

i just don’t know where to turn

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Thanks for sharing. I get an idea what you mean. A similar situation was the start of my personal journey. I use the term of too many cooks. The best thing I can suggest is, take a deep breath. One thing at a time & avoid stress where possible.

I started taking multi vitamins, exercising, changing my life & considering how to move forward with life. It’s been very odd trying to understand and not many will. You have these issues & we have to take the bull by the horns. Filter out what is relevant to your situation & take a step back.

If you stand very close to a big painting, you don’t see the whole picture & have the ability to take it all in.

You’re in the messed up system, but it’s you in control. Your situation is not the other persons.

Take it easy out there & good luck.

I think maybe you mean Transverse Myelitis?

Your nurse sounds no good for you regardless and if it was me I’d be saying goodbye and seeking a better one. Your neuro is more qualified than your nurse however it is worrying there seems to be confusion. Ask for your notes.either via the neuro’s secretary or your GP. I’d be tempted to call the neuro’s secretary, explain you are having new symptoms and ask for a follow up appointment. You need to know one way or the other what your diagnosis is and you want this in writing. Once you know you can ask about treatment.

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humbug is being nice - your MS Nurse sounds like a waste of a good skin.

According to the NHS, secondary Reynauds Disease is associated with auto-immune diseases:

so she is not exactly on the ball.

Essential tremor. If it is like a vibration - small movements but quite fast - this is usually associated with Parkinson’s Disease which was (last time I looked) a neurological condition.
Intention tremor. If it is more of an uncontrolled lurch - one or more limbs going in a different direction to the one you wanted it to move in - big movements but at a relatively slow speed - this is usually typical of MS which was (last time I looked) another neurological condition.

Do like humbug says, ask for your notes you have an absolute right to see them. Now, ask yourself if you really need that nurse. I doubt if a complaint to PALS would get you very far - MS Nurses are hard to find even if they are crap - but it could be worth bending your GP’s ear about it - the GP can go direct to the Neuro if it looks like it is doing you no good.


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