Advice Needed - Long list of strange new symptoms started in December, could I have MS?

Thank you for taking the time to reply. I wish you all the best too.

Hey, thanks for getting in touch! i'm still awaiting my results. I called the imaging dept yesterday and apparently my results had just been sent back to the neurologist, so hopefully hear really soon. How have you been getting on? I just read your recent post, have your symptoms still been ongoing?

Hey, how have you been getting on? I'm glad to hear that you stuck to your guns and got a referral. All the reflex and strength tests the neurologist did on me were within a normal range too, but surely something must be causing us to have all these symptoms!! Good luck with your MRI and neurologist appointment, I hope you get some answers soon and things start to

improve. I am still awaiting my MRI results, apparently they are back with the neurologist and he has dictated a response which has still to be typed up and posted. They reckon another week or two until I get them yet, then I'll also get a follow up appointment separately in the mail. Keep me posted with how you get on. X

Hi Ron, Thanks for reaching out! I am so sorry to hear how much you are suffering with all of your symptoms, and I can only imagine how difficult it all must be with anxiety on top of it all! I really hope you are able to get some answers soon, keep me posted with how you are getting on. I know how lonely and confusing it can all be and I definitely find comfort in talking to people in a similar situation.

My symptoms have been steadily worsening, my full right arm is constantly weak, aching and heavy and my hand cramps up badly now as soon as I try to write. My legs feel very weak and heavy too and painful standing up or climbing stairs, i've also had a few instances of my leg and arm giving way under my weight when standing up or getting out the bath. My cognitive issues seem to be worsening too, my memory is really bad and i keep jumbling my words and more recently started to stutter on occasion. (Also sometimes get bad tingling on my tongue?) Generally just lots of cramping, twitching, tingling and aching all over with bad nausea and fatigue every day. Ive also been experiencing a sudden sharp tightening crampy feeling in what feels like my ribcage that makes me short of breath and a strange crawling, warm buzzing feeling that spreads across my shoulders. I am sure there is more than that since my original list, but I can't remember off the top of my head.

I got the results back from my brain and cervical spine MRI both of which the neuro said were fine, other than an "incidental" cyst on my pineal gland in my brain - which he isn't concerned about and said won't be causing my symptoms. (Although i have read to the contrary in some instances so i'll ask more about that when I see him next). He said since the scans were ok he is confident that rules out any of the more serious neurological conditions such as MS. (If any one reading this has ever been told the same only later to be diagnosed id love to hear from you, as I have also read stories where nothing was spotted in first scan). He has said he suspects Fibromyalgia or Functional Neurological Disorder, but since neither have a diagnostic test, its a case of ruling out other things first. Next steps are MRI of lower sections of spine, nerve conduction tests and physio. He was reluctant to out me through a lumbar puncture since the first scans looked ok.

Anyway I will keep you posted too. Thanks again for your message! xx

it is really comforting to know that someone else is going through something similar and a place to vent. I think, and my closest think that I'm going mad with these symptoms that is constantly being put down to anxiety or stress and no one is really seeing the bigger picture and putting 2 and 2 together. its causing alot of tension as people want me to just accept its anxiety and I cant because you know when you know something isn't right.

your symptoms are not far from mine, I get more cramping in legs than anything and muscle twitching also have visual disturbances and one pupil bigger than the other without a reason ( had thorough eye examination) which you don't seem to mention which is why it's more likely to be fibro or fnd.

I have read that some scans are clear as it may be too soon to pick anything up on the mri or the lesions may be too small to be picked up on the 1.5t scanner- the basic mri scanner that most places and nhs use. But spinal lesions show clearer on these scanners.

its un common to have no brain lesions but spinal but it does happen.

Equally it could be fibro for you as you've been having symptoms for a while and no sign on mri.

dont know much about FND think it's when doctors have no idea what you have so they put that label on it.

has your doctor given you anything to help relieve symptoms?

mine keep giving me anti depressants for the pins and needles and numbness but I have side effects from everything.

whens your spinal mri?

I have mine tomorrow afternoon. 17/04/20.

you know the funny thing is I haven't even seen a proper neuro due to the covid-19 it's all been private mri's and reading the reports that they send through to my doctor.

the waiting game is annoying and I feel your pain it's so frustrating.

but on a positive one you are being seen and evaluated which is great. it's the not knowing what's going on is a nightmare.

I did a fasting diet for 5 days and i felt a bit better, i take supplements and I do some yoga and walk ( I used to cross country run 2 months ago) crazy how things change.

if you need advice on anything let me know.

I am by no means a doctor but I've researched a whole lot on neuro problems and natural remedies etc.

let me know how it's going? hope your getting some let up with those symptoms.

😃

That sounds very tough going, definitely stick to your guns, no one knows your body and what you are experiencing more than you do.

I too have been having visual disturbances I think. My peripheral vision in my tight eye has been blurry for months, daily see stars/flashing lights and regularly have a pain in my eye that feels like tugging from behind. All these symptoms only started for me in December last year, so 4 months or so ago and i got my first brain and cervical spine MRIs pretty quickly. I haven't been given anything for my symptoms yet as my neuro wants to do further testing first. I don't have appointments yet for the lower spine scans or nerve conduction studies, in fact i got a letter cancelling the scans until normal service resumes then ill be added to a waiting list, i expected as much. How did your scan go?

scans were ok thanks, couldn't find anything but yet symptoms persist.

currently on medication for pain (amitriptyline) but internal tremor and muscle twitching is going crazy and not sure if it's because of the medication or what's going on with me. very confusing time.

I still have the neurologist appointment on the 6th but only telephone so no tests etc. he also has all my private mri scans to look through.

4 months is a long time, did they say Ms to you? or have you not got your results?

Hey, how did our appointment go with the neurologist last week?

No, my GP initially suspected MS and the neurologist agreed it was a possibility, but my initial brain and cervical spine scans came back showing no demyelination, so he thinks that more or less rules it out.

More recently one of the most prominent symptoms for me has been muscle weakness, dropping things more, struggling to stand up or climb stairs, foot drop, and i even ended up in a&e earlier this week as i briefly lost control of my legs completely, like they went limp and i fell to the ground, i kept falling when trying to stand up and my husband had to pick me up again. Arm was affected too as when i tried to take a drink i more ore less threw the contents in my face. Following that i experienced an all over jittering/internal tremor and an electrical/buzzing feeling in my legs and arms. I was able to stand again shortly after but walking still felt strange, like i wasnt fully in control and was flapping my feet when walking. By the next morning i was ok again, other than more intense than normal tingling and lower back pain.