MS symptom Limbo land

Welcome and introductions
1

Hi, I’m new here and hoping to find other people who can relate.

Over time i’ve been experiencing symptoms that have been debilitating but with no real explaination as to why they are happening.

For over a year off and on i’ve been experiencing fatigue, brainfog, headaches, twitches, eye disturbances, muscle stiffness and headaches.

However, in the last few months my health has really deteroriated to the point i’ve been unable to work. I’ve been having so many issues all at once along with other usual symptoms - voice loss, chest pains, tremors (internal and external), twitches, pins and needles in my feet and hands, a constant ‘tv static’ feeling in my legs. Burning and crawling feelings in my skin and hearing sensitivity.

I’m already under ENT for the voice loss and ive been referred for speech and language therapy which i can expect to recieve in 12 weeks.

I’ve had a multitude of tests, kidney scans, ct scans, gastrointestinal tests etc and there is nothing glaring that is being picked up.

I have been backwards and forwards to the doctors and have felt like a hyponcondriac despite having very real symptoms.

To me, my symptoms really align with MS. My GP has agreed that it probably is a neurological condition and has now referred me. But i’ve been told it will be months until i’m seen.

It’s just such a horrid waiting game when you feel terrible, day in, day out without even a clear diagnosis.

The financial impact is also a huge worry, as SSP is not a lot to live on without a diagnosis or an idea of when or if i’ll be able to return to work.

I know it’s just a matter of patience, but it really does suck. I just feel miserable and defeated and wanted to share my thoughts hopefully with people who get it.

2

It’s awfully tough to have symptoms spanning a number of the specialist silos into which Western medical practice and expertise is organised. I wish there was more than I could wish for you than the patience that you have already prescribed for yourself!

For what it’s worth, which isn’t anything much, what you describe doesn’t sound anything like my personal experience of MS. But others on here might recognise aspects of it.

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3

Hi bemused. Yes the waiting can by frustrating and emotionally draining. My sympathies to you.

I’ve absolutely no idea whether your symptoms point to MS. Have you researched other possible causes?

In the meantime you could try taking Vitamin B12 supplements - low B12 levels can cause some MS type symptoms.

Also keep a written record of the various symptoms, when they appeared, how long they lasted etc. This could be very useful for when you see a neurologist- who will no doubt ask questions about symptoms, when etc.

I’m not quite sure how you do it, but for your peace of mind, see if you can find out what the waiting times for neurologists are like in your area.

4

Thank you for your reply. It’s just a case of taking care of myself and being patient I guess. What will be, will be.

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5

Thank you for your reply. I have had lots of tests to rule out various things. More blood tests than I can count and various other investigations. It has ruled out quite a lot.

I have a bit of a background in neuroscience and my GP and I are pretty certain its something neurological at this stage. I’ve looked deeply into several different things and my symptoms rule them out - for example the type of tremors i’m having is not consistent with Parkinsons. Some of the other things i’m experiencing arent typically seen in MND.

Time and again, every symptom i have or get, corresponds with MS, however. I also since learned I have a couple of friends with MS who have had a very similar journey to mine.

I know only an MRI and specialist can diagnose it for certain. But at this stage i’d be shocked if it WASN’T MS to be honest!

I think that’s why i’m finding it so hard to cope with the limbo of waiting.

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6

It sounds as though things are stretched financially already, so I expect that you have already considered and rejected the idea of seeing local MS specialist neurologist privately to begin with? It can at least shave a bit of time off the wait.

Accepting (or even asking for) help from others - financial help from relatives for medical fees, for instance- can be a bitter pill for an independent person to swallow, as I know only too well, but sometimes needs must.

7

I remember the anxiety of the time between having an MRI and getting the ‘formal ‘ diagnosis from a Neurologist (I fired off a few stroppy emails and phone calls).

I hope very much that you soon get a diagnosis

8

Hi @bemusedsheep,
I feel your pain and frustration and can relate 100% to your journey, although I’m not medically trained and have had several medics tell me I’m not presenting as they’d expect with someone who has MS so like you it’s a waiting game with multiple ongoing tests and more head scratching as we try to rule things out. Ive got my MRI in two days time so im hoping this will shine some light and give something more concrete for us to go on. I hope you get your scan and answers soon too.
Sending positive vibed your way :sparkles: