Possible neurological condition?

[nicky2512]

I just wondered if these symptoms sounded familiar to anyone!
I have fibromyalgia. I have got a lot worse in the last year with extreme tiredness and a list of new random problems including a strange tingly sensation in my feet, legs, hands and now my mouth and cheeks. I have dizzy spells and trip a lot, I also get very hot.

I attended a clinic due to severe pain in my lower back. An mri of my back showed disc problems but not touching nerves so not responsible for my problems. The doctor thought my reflexes were strange too and has referred me to neurology as he suspects a neurological problem.

I just wondered if this sounded familiar to anyone. Thank you.

I also have Fibro and am having similar symptoms, I'm booked for some blood tests soon and then a GP appt to discuss any results. Just wanted you to know you're not alone.

@daisy129437
Thank you. I hope you get to the bottom of what's wrong. Please update if you find anything out.

I think what is worrying me is how much worse I have got recently. If it is 'just' fibro that is fair enough but it just feels so bad that i'm scared there is more wrong.

The other problem is that GP's tend to put things down to having fibro and say there is nothing they can do.

@nicky2512

You're welcome. I understand what you mean about GP's (and other Drs in my experience) put everything down to Fibro, it's so frustrating, although I do sort of hope this is the case with both our symptoms.

Perhaps you could write a list of your symptoms to give/read to the GP so you don't forget anything?

Wishing you luck and will let you know if there's any update.

@daisy129437
That is a good idea as my mind goes blank sometimes and I find it hard to find the words.
Thank you and I will be thinking about you.

PenguinsRabbits - look up POTS UK or STARS for POTs stuff, and if you're in the SE, PM me for the name of the best specialist for POTs.

Nicky2512 - I have almost identical symptoms to you, was checked out, MRI-ed all over, and left the neurologist with a diagnosis of "hyper-sensitive nerves" , which has since been re-diagnosed as fibro. So one person on the "similar symptoms but not MS" list . Hopefully you get to the bottom of it, it's incredibly stressful not knowing exactly what's wrong, and what you can do. I was also v low in vit D (but not low enough for the NHS to treat, as per just about everyone else on MN who has low vit D)and supplements have helped, as well as accepting I can't do too much. Gentle [hugs].

@MyVisionsComeFromSoup
Sorry for you but glad there is someone similar to me. Anyone I know personally with fibro seems to function a lot better than I do!
Same here with vit D and take supplements.

The Dysautonomia International website has good information on POTS and other autonomic conditions:

www.dysautonomiainternational.org/

This fact sheet is good:

www.dysautonomiainternational.org/page.php?ID=180

"POTS or POTS like symptoms can appear secondary to other autoimmune conditions, such as Sjogren's syndrome, lupus, antiphospholipid syndrome, celiac disease, ankylosing spondylitis, sarcoidosis, Lambert Eaton myasthenic syndrome, myasthenia gravis, and mulitple sclerosis."

Good luck with your appointments.

Unfortunately it sounds like ms to me, I was diagnosed with neurofibromyalgia years ago and my gp warned me then it was a condition that was diagnosed by elimination of other causes - there was a chance that it was the early stages of ms. 10 years on I suspect my diagnosis is correct but alas sil has ms and it's similar to your symptoms

@stucknoue
Thanks. It is the speed it is getting worse that scares me. I took a wee funny spell in church today. Got very hot and shaky and had to leave. That has never happened before.
I will phone this week and see if there is any indication of how long my wait will be but unfortunately here in NI it could be very long. Doctor that referred me suggested a private consultation but i'm hoping to avoid that.

Have a look at functional neurological disorder this is what I’m diagnosed with at the moment
It presents similar to ms bit without any of the medical evidence of lesions

@Chouxalacreme
Will have a look. Thanks.

Thanks very much for info on POTS / Lyme - I would prefer a retest for Lyme as I was taking antibiotics at the time and had a matching rash and symptoms which reduced massively when I took the antibiotics used for Lyme treatment. I now just have the neurological / POTS type symptoms and bladder but it is so hard to get help for those. Private is a lot more thorough when I've used it but no longer have PMI and it runs into lots of money very quickly without. I've had that hot and shaky thing before a few times, seems to come on after eating out which hardly ever do now, no idea what it is though. Presume you've had all the usual blood tests for diabetes etc, mine was normal. Anything neurological like often gets put down as psychological/unexplained here which wouldn't be so bad if they offered help but its normally goodbye and its annoying when you know its happening in the same physical circumstances every time. I'm seeing them in October and they've said I've had mini-strokes but still say there's no help available but that's why I'm back then but its neurology rather than cardio. Hope you can get some help.

FND?