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Could it be MS? Advice greatly appreciated!

Posted , 6 users are following.

RachRoux
RachRoux

Hello, I'm 30 years old and I'm struggling with a lot of issues at the moment so I'm sorry if this goes on a bit i will try to condense it as much as possible.

I have chronic joint and muscle pain, fatigue, pins and needles in my feet hands and face that gets very painful and can go numb. I get sudden burning pain all over my body that feels like sunburn that comes on out of the blue and can last for hours. My hands and feet spasm and twitch uncontrollably either going into claw like positions that i can not straighten out or my fingers and toes will rapidly twitch. I have double vision when both my eyes open, dizzy spells like i am spinning and i get pain in my ribs almost like my ribs are being squeezed.

I have been diagnosed already with fibromyalgia, trigeminal neuralgia, intussusception, rectocele, stress incontinence, slow bowel motility and vitamin d deficiency.

After much research ms seems to explain pretty much everything that is going on.

I was admitted to hospital back in 2016 with suspected tia as the left side of my body went numb. I was given an mri of my scan came up clear and I was diagnosed with hemiplegic migraines. I was sceptical as I was diagnosed with chronic migraines at 11 so knew what to expect pain wise and I was only suffering from numbness, tingling and loss of strength but had no headache at all but the neurologist assured me it was migraine.

I have asked my neurologist since about repeating an mri to check for ms as the symptoms I am now experiencing started worsening but the idea was dismissed instantly as she said nothing showed up in 2016. She since said she would no longer see me as a patient and only writes to my dr to advise of my treatment for my migraines and trigeminal neuralgia.

I am now at the point where i can't see any other explanation and I am having trouble walking.

My doctors have done so many blood tests and said they think i need to go to rheumatology despite my blood tests coming up clear. None of my symptoms are explained through any rheumatic illnesses they just have some similarities.

I only ever had an mri of my head and not my spine so maybe that was the problem?

I'm sorry this was so long i just feel very lost at the moment especially as I am in lockdown on my own.

Any advice is greatly appreciated and if you think this sounds nothing like ms or possibly something else really appreciate your honesty.

Thanks

Rachael

0 likes, 10 replies

10 Replies

  • kerplunk321
    kerplunk321 RachRoux

    Edited

    Hi Rachael,

    Sorry to hear you are suffering so much with all of your symptoms. I can't really offer much in the way of advice as i am in quite a similar position. I'm a 32 year old female, and i think we have a lot of similarities in our symptoms. (Feel free to have a read at my post where I have attached my list of symptoms and latest updates in the comments thread, I think its currently the post below yours titled "Advice Needed - Long list of strange new symptoms started in December, could it be MS?) I am an NHS patient in the UK, are you the same?

    Basically, this is all very new to me, the majority of my symptoms just started in December past. So far ive had a brain and cervical spine MRI, both of which came back clear (with the exception of an "incidental" pineal cyst in my brain which apparently won't be the cause of my symptoms). My neurologist is satisfied that the clear scans rule out MS entirely and is currently leaning towards a diagnosis of Fibromyalgia too. Once normal service resumes, he has arranged for me to have an MRI of the 2 lower sections of my spine (they can only apparently scan 2 areas at a time) nerve conduction studies and physio. He doesn't think the lower spine scans will show anything up as that would typically only cause symptoms to the lower half of my body whereas, like you, my symptoms are widespread. it sounds like you were only given a brain scan, I may be wrong but i'm sure I have come across folks stories where they had lesions in their spine but not brain, and also some rarer instances where initial brain scans were clear and later ones showed demyelination, perhaps due to the initial ones being too small or not in a visible location. My neurologist was quite dismissive when i asked about that, but did say they could potentially rescan to see if there had been any changes a year or so down the line.

    With all that said, I definitely think it would be worth you pushing for a repeat brain scan and (at least) the cervical spine, since they haven't done that yet. Is there any possibility you could also ask for a second opinion from another neurologist? I have no idea how you go about that, whether your GP could request it or if you would have to request it from your neurology dept directly? But i have certainly read of folks having seen multiple consultants before getting a diagnosis.

    I am sorry I can't be of any real help, but I know having lots of doubts, not to mention the invisible symptoms, can feel very lonely - especially right now. I feel the very same way and get a lot of comfort in speaking to someone in the same boat, I am always here to chat if you want to. X

    • RachRoux
      RachRoux kerplunk321

      Posted

      Thank you so much for your reply!

      I just had a look at your post and yes it definitely sounds like we have similar things going on at the moment. I am based in Leeds. If your symptoms started in December i guess it could be ms but the early stages and that could be why the mri came up clear. Maybe repeating in a year like you said would potentially show something if the symptoms are still present.

      It is the same reason why i want to repeat my mri as it was done back in 2016 just of my head. It has been 2 years since by fibromyalgia diagnosis and since then my symptoms have got a lot worse.

      I definitely want to see another neurologist as the neurologist i am under doesn't specialise in ms but I am always sent to her for everything as she has been my neuro for migraines and trigeminal neuralgia for years. I'm hoping my drs will agree to see a different neurologist they are just very stuck on the rheumatology route as my dad has rheumatoid arthritis but I have had many blood tests and my inflammatory markers came back normal.

      I am under a specialist urologist and colorectal team as i am awaiting surgery and they mentioned ms as demyelination can be a reason for incontinence and prolapse which i am suffering from and they told me to speak with my neurologist about it but when i mentioned it she simply said no.

      I hope you get some answers once you get your next scan, if it is fibromyalgia or ms or something else entirely it just helps to know how best to move forwards.

      Rachael

  • carol41331
    carol41331 RachRoux

    Posted

    Please keep pestering them, I had brain scan nothing showed up, even after a further MRI my consultant still said what were clearly lesions was probably not due to MS! A lumbar puncture finally convinced him. My age was a factor at nearly 60 I was deemed to old! Don't give up, good luck xx

    • RachRoux
      RachRoux carol41331

      Posted

      Sorry I missed this. I'm still pestering them and they just out everything down to fibro it's incredibly annoying. Thank you for your message, I'm so glad you finally got a diagnosis!

  • debbie84914
    debbie84914 RachRoux

    Posted

    I wrote a long answer elsewhere, but I would like to offer a possibility you probably haven't heard yet. Parkinson's Disease. I too had a multitude of symptoms and was undiagnosed for six years. Get a referral to a neurologist who SPECIALISES in Parkinson's... that's important. I saw two neuros who didn't pick it up, wasn't in their field of knowledge. Medication changed my life! Good luck.

    • desperation
      desperation debbie84914

      Posted

      I thought Parkinson's was involved in heavy shaking like Mohammad Ali had!

    • RachRoux
      RachRoux debbie84914

      Posted

      I don't have any kind of involuntary shaking that is linked to Parkinson's. I have spasms and twitches particularly I my hands but no tremor.

      I'm really glad you were able to get a diagnosis and the right medication is helping you ♡

  • diane73605
    diane73605 RachRoux

    Posted

    same here i've been getting pins & needles in my feet my thighs are weak & feel so heavy that i cant walk i have memory loss fatigued all time headaches & my emotional state is so bad i'm crying then angry feels like i have no happy hormone in me my knees are painful i get a twitching in my sleep & above one of my eyes my eye sight is getting worse & i'm starting to see muddy rain drops falling down my eyes.getting dizzy now too!..the emotional state now i'm in is very much a reck smoking all time & picking like i cant stop myself have no control i have booked a private mri scan but few wks off & my now desperate for answers as each day im suffering been like this now for months tried so much to hold it together but now i want to end my life over it

    • diane73605
      diane73605

      Posted

      also got throat issues where food gets stuck the tiredness is unbelievable one simple job & i need to sleep 😭😭😭😭😭😭

    • RachRoux
      RachRoux diane73605

      Posted

      Are you okay?

      If your mental heath is really bad you definitely need to contact your doctor or local crisis team for support.

      ♡

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