confusing symptoms

Everyday living
1

I was diagnosed with MS 4 years ago.

My symptoms started with vertigo. My GP referd me to neuro fearful of an acoustic nueroma.

I saw the neuro and he did lots of tests including sensation tests and declared no issues found, but sent me for MRI.

Between the mri and the next Neuro appointment I had a nasty fall landing on my neck (did not attend hospital). This is when I started experiencing excruciating pain in my neck and shoulder.

At the next appointment I was told the mri showed some lesions in my brain and RRMs was diagnosed purely from the scan and the vertigo symptom ( I have since had my wisdom tooth out and the vertigo ceased, explained by Neuro as coincidence). At this appointment it was discovered that I had reduced sensation in my arm. It was a relief to know it was not a brain tumour, not happy about ms, but it made sense and was better that the other.

They since discovered a lesion in my neck and blamed the loss of sensation and pain on this, as the neuro said a normal individual of my age would show similar numbers of lesions, but because of the symptoms my diagnosis was safe.

after 2 years of passing out regularly from the pain which came in waves during the day every day I saw my GP and asked about the possibility of my MS causing muscle spasms. This was the first time any doctor had physically examined me since the original check prior to diagnosis, other than seeing if a needle poked in my arm hurt. :slight_smile: . The GP said the muscle spasms were some of the worst he had seen and that I should request Baclofen from the Neuro ASAP.

These were prescribed, but yet again no physical exam happened.

A year later I lost all normal sensation in my left arm, No treatment was offered. Six months later Optic neuritis, again no treatment offered. When I sleep at night I wake up with no feeling of any sort in my arm and a ache ( which hurts when prodded) in my neck. The neuro has stated that the Palpable pain is purely a coincidence and that it is not connected to my MS.

Twice/thrice a day now I have the following occur in the following order over the space of 10-15 minutes, 1- cold sensation on my face, 2-tingling in arm, 3-pain in neck and shoulder (burning), 4 eye starts to lose focus and “quiver”.

Has anyone out there experienced similar symptoms that develop over the course of 15 minutes regually ( in my case daily)

Just to clarify these symptoms are not due to the neck injury as the neuro only found a protruding disc @c5 on the scan.

I am just frustrated that every question I put to my neuro is answered with coincidence or we don’t know why? If anyone has experienced similar have they had a better explanation? None of my symptoms have remmited.

2

hello

that fall sounded dreadful, i’m still cringing,

it does sound like a lot of your pain stems from that fall.

have you seen any specialist for this?

same with your eyes, have you seen any specialist for this?

i had a bad fall last year and still have a sore eyebrow.

(landed on my face).

hope you find something to help.

carole x

3

Thank you cat woman :-).

Yes it was a fantastic fall, Missed the top step and ended up at the bottom. Ironically I did not see a doctor because I had an appointment for my ASD son which we could not cancel, and I was under a misconception that I was a tough cookie.

No I have only seen the neuro, I assume that any damage to my neck would be picked up on the mri scans. To begin with I asked several times if the fall was connected and have been reassured each time there is no connection and that it was coincidental that all my ms symptoms occurred after. It has taken me a while to accept that the pain was not connected, but have never doubted the ms diagnosis itself. It is one of those conditions that is done on the opinion of someone who has seen it all before, so although I am frustrated with the lack of reasons behind my symptoms, or more so the way they have presented themselves, lehermittes that was not presenting itself as they would expect and a lack of remittance they must be confident else I would not have been through several very expensive drugs, copaxane, tecfidera and aubagio (none worked as kept having more relapses) and ended up being discussed for lemtrada (still awaiting response).

xxx

4

wish you well with lemtrada.

it sounds amazing.