waiting for a diagnosis

Hi. My name is Sammi. i was diagnosed 10 years ago with what the doctors believed to be M.E. However they now feel they may have misdiagnosed me. i have problems with balance and co-ordination, numbness and tingling, weakness, i cant seem to shake illnesses off and i am dizzy and have had some falls. i have a fixed pupil with brain blowing headaches 3 to 4 days a week which can land me in bed up to 3 days and i am vomiting the whole time. my arms are worst affected at the moment. and thats just the physical issues!. i also have a illeostomy and epilepsy. i have the support of others and one person recommended that i contacted this forum for additional support. i feel frightened and hate feeling always so ill and out of control.

Hi Sammi

is your GP helpful?

if so visit regularly and keep him/her up to date on your symptoms.

if it is on your medical records any specialist you see will have access to them.

keep a diary of what symptom occurred and when.

are you seeing a neurologist?

it’s so cruel to be suffering and not know what it is and what to do.

i wish in had some pratical advice for you.

carole x

Hi Sammi

Sorry to hear you are in limbo waiting for a confirmed diagnosis. Your symptoms sound quite distressing no wonder you feel out of control.

Have you had an MRI scan ? This is one of the main tools neurologists use to diagnose MS, it would show up if there are lesions on the brain and spine. Do you have a meeting coming up with a neurologist?

I have RRMS. I also have lumber spine issues not connected to MS, these can cause numbness in my feet and sciatic nerve pain in my legs. I slept on something by accident in my bed last night and woke up with a numb patch on my foot. After going to the toilet I got back into bed and the numbness had gone, so that numbness was probably caused by my lumber spine issues rather than my MS.


Hi Sammi,

You were right to open up on this forum. That’s what its for. We are here to help support folks with MS issues. I’m so sorry you’re so unwell plus the illnesses to boot. What a picture you describe.

We have all experienced episodes that are scary, debilitating and emotionally draining. It will pass at some point. Do you feel alone with your issues? It can hit from time to time even with a circle of support around you. You are the one who has possibly been misdiagnosed. Now you are in limbo waiting for confirmation or otherwise of MS. While waiting though you should not be vomiting, etc. Please speak to you doctor about this. It may be a side effect of meds and can be managed.

You sound a brave person. I can only say stay with it and don’t be frightened. We send you warm hugs.

Kindest thoughts, Anne

Hello everyone. Thankyou for your kind words and support The vomiting is due to the eye pain and not being able to cope with any light in that eye Yes I do feel very alone and frightened as although I have been ill for so many years, this is now constant pain and loss of independence and that is what I don’t like. I have a baby grandson and I supposed to be having him twice a week but I am worried I won’t be able to. I am frightened and fed and scared of losing my new partner He already has seen me through 3 operations, pneumonia and he is my full time carer and we have been together just over a year. Now I woke up with croup this morning! Gah!

My emergency appointment with neurologist is July! My gp is trying to get it brought forward

Hi Sammi,

Have you seen a neurologist previously, so you are under the care of a neurologist ? If your GP is trying to hurry your neurologist appointment along there are a few things that may help this.

You could contact the bookings people at your hospital who make the appointments. I have done this before and found out the name of the neurology appointments bookings person. You could tell them that you would be fine to take a last minute cancellation appointment to see a neurologist (two or one days notice sometimes). This has worked for me.

Hi Sammi,

That all sounds rotten, I vomit with migraines so I feel your pain. The only suggestion I can give you is to consider accupuncture. I had a particularly bad couple of months with chronic sinus infection which kicked the migraines off…I was desperate so booked it up. Ironically, the Doctor I saw is now my GP and that’s a god-send, I can go back for a accupuncture session if I make it clear when I book. I’ve only had one session since MS diagnosis but really don’t need it for my head often now

The bottom line is that I get far fewer migraines and they’re not usually full blown, I don’t lose a day hugging the toilet… I might need to sleep desperately or I might even be sick but don’t have the blinding headache.

It doesn’t work for everyone but it really helped me.

I hope you get an answer soon and I’m so sorry to hear it’s probably the MonSter

Sonia xx

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Hello everyone. Yes I might call the neurology department and say that I will take a last minute one. My neurologist was originally based in Kent and the hospital has shut down now! Re acupuncture, I love it but I can’t get it on NHS and I can’t fund it myself.

Hi, some charities offer free ear acupuncture, I did a search online in my area and was also told about it by other people.

I have heard it can work well. I’ve had low cost acupuncture before it was twenty five pounds for an hour.

I had a operation just over 2 weeks ago and obv I have had illness in between that and now. Today I have woken in general pain, nausea and pins and needles in my arms. I feel tired and weak and very very fed up