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.

[nicky2512]

Anyone?

[BusterGonad]

Sorry to scare you, and I only know about the symptoms from google and a friend who has it, but maybe MS?

[nicky2512]

Thank you for replying! That is my worry too. I am trying not to google too much but doctor did suggest that.
I would like to know if anyone else had similar and it turned out to be that or something else.

[PenguinsRabbits]

Not exactly the same but for about 2 years now I've had a lot of problems with balance and dizzy spells - its all the time but worst moment is on going from seated to standing up and often collapse then. Its like being on a boat in a storm all the time. Sometimes things spin but generally not. First 9 months of it was getting infection after infection but a longer course of antibiotics stopped that but dizziness remained. Get tingling in left arm, neck/ jaw and fingertips though it comes and goes, sometimes one leg goes weak or one arm goes so can't move it but comes back in minutes to half a day. Get very hot and cannot tolerate heat at all - need to drink crazy amounts of water to not feel losing consciousness and to be able to hold a conversation.

I am also with neurology and failed a lot of neurological tests - weakness on all right side and right eye, failed balance test, failed test were put hands on each other. They initially asked about MS / Parkinson's, after MRI they've gone with mini-strokes with high risk of stroke but I've asked to be referred back to double check that and see what I can do to keep risk down. So I don't really know but have similar. Currently my back is giving out sometimes but only mild pain from lower back.

The other thing I wondered about is I am close to peri-menopause and whether some symptoms are related to that like the going hot and getting palpitations.

[swingofthings]

How old are you? I suffered from all you've described, very scary. Was referred for MRI, ENT etc... turned out it was all symptoms of the perimenopause.

[PointlessUsername]

Low B12 can cause Tingles,dizziness & tierdness amongst other things.
Has that been checked?

[nicky2512]

B12 has been checked and is fine. I had loads of blood tests.
I am 42 so possibly age though I was diagnosed with fibromyalgia about 5 years ago and was having symptoms before that so has been going on for a long time. It is just that since last year it has all gone down hill fast and even over the last few weeks I notice a big change.

Doctor also mentioned unusual reflex in my feet but I cant remember the name!

Thank you for your replies.

[nicky2512]

Oh and I also have a twitch/shake in my right arm if I use it too much.

[FrappeLatte]

I don’t have any experience but it does sound an awful lot like MS to me. Hope you get some answers soon

[nicky2512]

Thank you so much. I have got to the point where I don't think I will care what it is just as long as I know because sometimes I feel like I am going mad!

[nicky2512]

PenguinsRabbits did they do a brain scan? Doctor that referred me said they probably would want to. Problem is where I am the waiting list is horrendous.

[Yogagirl123]

Try not to worry OP, are your vit d levels ok?

I have MS some of my symptoms are similar, but I also have fatigue, bladder issues etc. See GP to discuss.

I hope you get on ok. It could be many things but if it does turn out to be MS, there are lots of different disease modifying treatments available.

[nicky2512]

Yogagirl123 Vitamin D is ok. I am permanently exhausted and sleep a lot during the day but that could just be my fibromyalgia.
I also have a recent problem of not completely emptying my bladder and having to go back to the loo several times.

I suppose I just don't know anyone with things like MS and ignorantly assumed it meant being unable to walk etc. I was therefore very shocked when the doctor suggested it.

[Hecateh]

A second for B12. Ask your surgery for your actual result. Your B12 has to be almost non existent for it to show as low in NHS eyes.

I had all those and my GP said my B12 was fine but because of gastric surgery B12 injections were recommended any way. It took some time but I am much better now.

[Nat6999]

I suffer from Fibromyalgia & ME/CFS, I have times when I get tingling through my body & often wake up to my face & lips having pins & needles. I also have problems regulating my body temperature, I'm either red hot or freezing cold.

[PenguinsRabbits]

Yes I had a brain MRI - the wait wasn't as long as I expected, maybe a month to six weeks. CT and neurological tests were done same day in A&E then referred for non-urgent brain MRI. May vary from area to area - next neurology appointment is end October so had a long wait to get that from June. The doctors said mini-stroke and not MS after that report. It's odd though as symptoms match MS or Lyme much more closely than mini-stroke symptoms but from what I can see online MS white lesions looks very slightly different to ones I had. I would prefer to have a spine MRI too though as have problems with legs / balance and bladder - my issues started with very sudden bladder issues and NHS said no infection.

I think most people they test for MS they say don't have it - it also seems to often take years to get a diagnosis. My bloods come back normal. I have also started getting twitching in one leg and a finger, just comes on randomly. Since I've had the antibiotics I don't get as tired though always fall asleep mid afternoon and get very dizzy / confused / hard to wake up then and have trouble speaking on waking at times. I can't tolerate exercise unless its swimming and just fall asleep with no warning in the day.

MS was initially suggested to me a year and a half ago then a year ago and both times I ignored it as I thought couldn't be that. But now I would prefer they test thoroughly to see if it is or isn't that. I've always suspected Lyme as had an insect bite mark about 3 weeks before 95% of symptoms started suddenly and it matches Lyme rash but blood test was negative (though on doxy antibiotics at time which can give false negative).

[nicky2512]

Will def check about b12 levels.

PenguinsRabbits. That sounds familiar especially the sleeping. My mum has to ring me a few times in the afternoon to wake me up. Suppose I will just have to wait and see. In NI and due to problems with neurology here even an urgent appointment is over a year.

[Bluesheep8]

I was diagnosed with MS 20 years ago after an MRI and a lumbar puncture. My symptoms at the time were visual and sensory, no loss of balance or weakness etc. The thing with MS is it's unique to each individual.

[ToLiveInPeace]

For @PenguinsRabbits - dizziness when standing (and improve with water) sounds like it may be POTS, which is postural orthostatic tachycardia syndrome. It's caused by problems with blood pressure but lot of doctors don't know much about it. I regularly step over my poor DH when he's landed on the floor again.

Hope you and OP both find some answers.

[youarenotkiddingme]

Reflex in feet may be the Babinski sign?
When the soles of your feet are strokes the toes fan up or the big toe does.

There is also hyper reflexia. These are exaggerated deep tendon responses. When my ds has his knee reflex tested his opposite thigh contracts 😂

He also has spasticity in his muscles.

The tingling could be peripheral neuropathy.
So other conditions as well as Ms can include Charcot marie tooth, hereditary spastic paraplegia and other neuropathy conditions.

A good neurologist should be able to test and rule out all conditions. You can also ask to be referred to a specialist neuromuscular consultant who deals solely in muscular conditions.

[nicky2512]

Thank you youarenotkiddingme - it was Babinski!

I suppose it really could be anything and I will just have to wait and see. I really appreciate so many responses though. Thank you all.

[PenguinsRabbits]

Thanks LiveinPeace That does sound very like it.

A year is so slow.

[ToLiveInPeace]

@PenguinsRabbits - you'd need to see a cardiologist to diagnose and manage POTS. Treatment is usually betablockers plus water, salt etc. Some hospitals have cardiology people who know about POTS but not all - worth researching where you'd want to be referred.

[PenguinsRabbits]

Thanks LiveinPeace That's interesting about the beta blockers - my Dad has been on those since about 18. The hospital I go to since I moved a year ago is excellent and looked it up and they give talks on POTS so think would be fine there but current referral is neurology.

[Walkaround]

A false negative result for Lyme disease with the blood test is not at all uncommon. One test early on really isn't enough if you have continuing symptoms and had the distinctive rash.