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

Posted , 8 users are following.

At the beginning of December I started seeing a chiropractor for ongoing neck and lower back pains that started following the birth of my daughter in April, after a few sessions the lower back pain eased but the neck pain worsened. (The chiropractor was very gentle and didn't try to crack my neck or anything). I had a random funny turn one evening where i thought I was going to pass out, felt very dizzy was seeing stars, legs went like jelly, my neck was really sore, and my right arm went numb and tingly. Went to the docs who arranged blood tests (which came back fine). The numbness and tingling has persisted ever since. The same thing happened the next night and i went to a&e - more blood tests and an ECG both came back fine. Since then, i have been experiencing more and more symptoms daily which come and go randomly and are all over my body. I have attached my ongoing list. I was referred to see a neurologist, all his physical tests for reflexes, vision, gait, strength etc. were normal and just had an MRI of my brain and cervical spine on Saturday, so nervously awaiting the results. I have found this site very helpful and informative over the past couple of months and in the mean time was wondering if anyone else had experienced similar symptoms to my list, or has any advice? Thank you!image

0 likes, 13 replies

13 Replies

  • Posted

    That is the way to go about getting help from this list. Congratulations! I hope you get a useful treatment soon. All the best.

    • Posted

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

  • Posted

    how did you get on? have you had mri results?

    • Posted

      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?

  • Posted


    i hope its good news for you. recently ive been having a loss of sensation all over and numbness. Also some of my muscles feel sore. Ive got a MRI scan coming up and i returned to my GP yesterday and she tried to shoo me out the door with anxiety, after a good 20 mins in there she eventually agreed to refer me to a neurologist despite the fact she's confident it isn't neurological and it was my insistence that led to her referring me. She cant detect weakness in me and reflexes she did were normal. Really struggling to be positive which probably isn't helping. Just want it to go away 😦

    • Posted

      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

  • Posted

    hi there

    I've read both if your stories kerplunk, holdenrad and can totally relate. not that I want Ms but I'm fixated in it and I've learnt so much about that I dont know what's real anymore.

    Been having some crazy symptoms like you both but muscle twitches are just unreal as well as numbness, eye pain, panic, mood swings, insomnia, back and neck pain, you name it.

    I suffer with health anxiety anyway so feared ms years ago and now it's back again and the fear is more than ever and its debilitating. I'm a mess.

    anyways doctor shrugged me off as anxiety for the passed 5 years so had to push for a referral to a neuro.

    I've had my mri of head and cervical spine privately and came back with no issues had 3 doctors examinations and reflexes and strength is ok. apparently but still getting insane symptoms so not sure if I should pay for a spinal mri?

    it's all so confusing isn't it is this anxiety because I can't believe it.

    how are you both getting on with your journey?

    • Posted

      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

    • Posted

      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.


    • Posted

      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?

    • Posted

      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?

    • Posted

      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.

  • Posted

    I have Idiopathic intracranial hypertension, and the passed year I've had a very bad stiff neck and shoulders and lower back pain, both knees ache constantly, pains and needles in both feet going up the legs and always fatigued, lower abdomen pains and cramping constant, cramping in hands and feet also and suffer with migraines which is a symptom from IIH anyway, plus I have very very bad vision and swelling behind the eyes, I new something wasnt right so contacted the doctor who sent me for a mri on head and cervical spine, results came back I have demylination currently awaiting to speak to a specialist neurologist to find out exactly what the hell is going on, I've done my own research as the doctors is my area arnt very good and waiting times for neuro is a joke, most of my symptoms point to MS but I'm not a doctor so dont want to speculate, I'm 32 and before this slowed me down I was very active, love the gym riding my bike and walking my dog, but my body physically wont let me do as much as I would like to do as much as I push myself I pay for it later in the day with the pain and also in pain while doing it, doctors say I need nerve painkiller but they cant describe until I've seen the specialist as it interacts with my other medication for IIH so they just loaded me up with tramadol which just makes me feel light headed and sick, currently I feel scared as I'm young and I dont know what's happening to my body, I've been told i have this disease but they didnt tell me much more about it so I've had to find out myself and what I've read so far doesnt sound good, it would be great to speak to people who have been through or going through the same thing and get some more understanding on this, i also suffer a lot with anxiety and depression and PTSD I have done for many years so this worry is currently sending my mind wild! I understand there are people worse off out there and I just have to ride through it and deal with that comes my way, i just feel the lack of compassion from the doctors giving me this information and not explaining anything about it and leaving me worrying and scared is outrageous, the symptoms you have written on your list I have many of those symptoms myself, do you wake up achy aswell? like your who body aches? I thought it was my mattress and pillows, I've gone through 5 mattresses and god knows how many different pillows in the last year and now I know it's not that causing the issue, I can sleep solid and wake up so tired, and still be tired throughout the day, even the smallest tasks are becoming a big chore lately and I'm normally flying around the house cleaning and tidying but it seems I can do one small task now and i feel so tired and lack of energy.

    thank you for reading, any information that anyone may have to help me will be greatly appreciated, take care and stay safe everyone x

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