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Awaiting diagnosis & petrified

Hello everyone, newbie here,

I’ll try & keep it brief!..I’m 46 fit & well, no medical history to speak of apart from history of migraines…fast forward to 3 months ago when I was woken up in the middle of the night by what I can only describe as severe pain in one eye as if someone was trying to remove it with a rusty spoon!..my eye was also swollen but still open, vision 90% ok, I work in a healthcare setting so mentioned it casually over a coffee to an ophthalmologist & that’s when it all began to turn into the NHS roundabout…blood tests revealed high levels of TPO antibodies but T3 & T4 normal so was treated with steriods for thyroid eye disease (even though no previous thyroid probs) eye soon recovered & feeling fine…follow up & MRI with contrast ordered to check any residual swelling around optic nerve…all good in the eye dept!..but MRI showed “diffuse high density signal areas frontal lobes, white matter not breached, highly suspicious of demyelination”… referral to neuro, appt around here around 16 wk wait so still waiting, appt for endocrinologist next month to check if thyroid issue a red herring or not.

With having no symptoms I’m struggling with the ?MS diagnosis & frankly I’m petrified…

Sorry for this epic ramble & thank you for reading!

Hello welcome to forum.

My neurologist seems to think that my thyroid could be part of the problem as I have an underactive thyroid which is delt with tablets, or that it could be my tablets or migraines, that have caused the lesion that I have, I haven’t had a migraine for three years.

A lot of the people here can say how they found out what they have, whether it is MS or not, please don’t go on dr Google they just tell scary stories. With you being in the healthcare setting you would know a lot more about it.

They’re a caring bunch here and might be able to give some advice to help you.

So ask away, it’s a shame that you have to wait four months before seeing the neurologist is there anyway you could get on the cancellation list or your GP to hurry it up a bit.

We call this part limboland and it sucks. Good luck .

Kay

Hello

I wouldn’t call that an epic ramble. I’ve rambled far more, with less reason!!

It does sound a bit odd, thyroid bloods being a bit strange, but with no thyroid disease. Plus scary demyelination so time for a very long and worrying wait for a neurology appointment.

Hopefully the endocrinologist will be able to help explain the strange thyroid thing.

But as for the demyelination, it’s flipping unfortunate (at the very least) that you’ll have to wait for the appointment to get some answers from a neurologist.

As Kay said, maybe you could try to get a quicker appointment, a cancellation perhaps, or ask your GP to request an ‘urgent’ appointment rather than just joining the back of the queue?

Hopefully you’ll get seen sooner than 16 weeks, and that the news is not quite as frightening as you’ve been fearing.

Sue

MissMeg,

Being scared of the unknown is completely reasonable so it important to find out exactly what you are dealing with as quickly as you can. The NHS has finite resources so things take time. In my limited experience I have found that sometimes you might need to make a bigger fuss than you are comfortable with. One of my arguments for rapid support is that the sooner you get a diagnosis and treatment the lower the cost to the NHS in the long term.

Try to let any fear drive you forward rather than consume you…

All the very best

Mick

Hi Kay, Sue & Mick Thank you so much for your replies! Have spent a precious day off work being consumed by worry, which is not like me at all :slightly_frowning_face: It’s almost the not knowing not the possible diagnosis that’s got me today, it’s funny how worry can also manifest itself physically…managed to convince myself at one point today I had tingling in hand & foot…think I need to take a deep breath & give myself a good talking to! Sarah

Hi MissMeg, I’m currently a year into my journey and am still awaiting a diagnosis - towards the beginning when everything was new and there were lots of long waits with no real action it felt very scary and it was all I could think about. As time has gone on and long waits have become par for the course I generally worry less and only get more anxious/emotional when I’m about to have tests or about to receive results, because suddenly it all feels real again and I’m desperate to get answers. The good news is that your initial symptoms have gone - that’s one hurdle you’ve already overcome. If your scan shows something is happening but you’re not feeling unwell that’s quite positive as there’s a chance that if you do have MS it may not affect your day to day life as much as you imagine. Do you have an option to go private? It may be worth looking into as speeding the process up may put your mind at ease. And in the meantime, use resources like the MS Society and MS Trust to educate yourself as much as possible so you feel like you’re regaining some control over things - like I said, when it’s new and you don’t know much is when it’s most scary, but starting to learn about it can help to settle some of your fears. It’s amazing how many advancements are being made with treatments and to see how people are getting on with a relatively normal life regardless of a diagnosis. I hope things start to feel better soon :slight_smile: Sarah

My daughter is an incredibly smart, Horseriding , swimming , scuba diving 15 year old . She complained of tingling in her right Leg 7 weeks ago. The dr thought she might have pulled a Muscle . We took her back and got a referral that a neurologist . Her walking deteriorated and two weeks ago and took her to A&E. She had an mri which showed damage to the coating on her nerves going up her spine and two lesions On her Brain. They think she has ms but Gosh will not confirm until all test results are back . She now cannot walk without a wheelchair for long distance and gets tired very quickly . She Does not want to accept it which is understandable at this early stage and we are in shock. We are back at Gosh tomorrow as her left leg is not improving after five days on iv steroids she is now on oral steroids . Very seriously worried for the future .