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    Limbo Bimbo

    (I'm not really a bimbo. It just sounded good )

    Hey everyone! I’m new here. I’ve been in MS limbo for 2 years now, 1 non-active lesion in my brain, no spinal lesions. I’ve had three brain MRIs and one full spinal MRI, no spinal tap yet. I go in for an EMG in a couple of days. If I do have MS, I would be in the middle of my 3rd (known) relapse.


    It started in late 2018 with some really bad vertigo, which stayed for multiple months and would come and go – I would feel drunk and like everything around me was moving slightly. I was referred to a neuro in January 2019 and given my first MRI which showed the lesion, but bloodwork was perfect and no other hallmark MS symptoms at that time so my neuro just chalked it up to a viral infection I had the year prior, put me on meclizine and sent me on my way. April 2019 I was diagnosed with Celiac disease, but other than that I had no medical issues until late 2019/early 2020 (except a few times where I had something that I could only describe as an MS hug). I got strep throat in December, and in January 2020, after getting strep, I started feeling numb spots in random places on my body – like a patch of skin on my leg would feel numb/painful to touch, and couple days would pass, and then the spot would “move” to a different limb. This happened for weeks. I also had major “skin crawling” feelings all over my body, pins and needles, itching, you name it. it was pretty much constant for months and pretty maddening.

    Now, fast forward to November 2020 and I’ve had an entirely new set of symptoms creep up. I had a bit of vertigo but not nearly as bad as I had it before, and I still have the itching/skin crawling/pins and needles. I’ve had a mild/moderate headache every single day since probably the beginning of November (before, I would get the occasional tension headache but nothing frequently), I get random stabbing pains to the point I cry out because it’s so painful. My body will twitch especially when I lie still (sometimes it feels like a buzzing sensation, sometimes my foot will jerk toward me), and I’ve gotten frequent painful muscle cramps recently. I’ve been told by my long-term partner that I twitch/jerk in my sleep much more frequently than I ever have before. Been getting night sweats almost every night. To top it off, I have been incredibly exhausted despite sleeping at least 8 hours every night and eating relatively healthy and exercising.
    Has anyone had similar symptoms? I’m not good at waiting and I just want to know if I have it or not!

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
    Last edited by KoKo; 12-14-2020, 06:58 PM.

    #2
    (I'm not really a bimbo. It just sounded good.) Glad you cleared that up. I was wondering why anyone would describe themselves that way.

    Sorry to hear about your situation. It must be very frustrating not knowing what is causing your symptoms. I was fortunate to be diagnosed right away. I have had many of the same symptoms you have described. One thing I have learned from living with MS for 17 years is that it is a moving target. Weird symptoms seem to come and go at random.

    I know waiting sucks. I wish you good luck with your upcoming testing and hope you enjoy the holidays.

    Comment


      #3
      Welcome to MSWORLD Madison!

      So many of your symptoms sound like MS; many of them I have experienced. It is always frustrating to not know.

      I had to wait years, but nowadays there is so much more knowledge surrounding this disease. Although, for many, other conditions have to ruled out first. Have you been tested for others conditions yet?

      My advice is to keep complete records of all your symptoms (like you outlined for us) and have them on hand when you meet with your doctors. Hope your EMG appt goes well and will uncover more of this mystery for you. Please keep us up to date with your findings!
      Keep well
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        Hello madison ~ welcome to the MSW message boards.

        Thank you for sharing your situation with us.

        Many of us can relate to some of the symptoms that you are dealing with.

        Not knowing the cause of your symptoms can be understandably frustrating and stressful.

        Like CheerDown, I didn't have to wait very long for a diagnosis, as the criteria required for an MS diagnosis had been met after the test results were in (and other possible conditions were ruled-out). But even that short wait was certainly anxiety-provoking!

        Let us know how the EMG goes, and keep us posted on how you're doing, madison, ok? Thanks.

        Take Care

        PPMS for 23 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          I don't know; I think "Limbo Bimbo" is a good name. It'll definitely make you stand out, and most of us can relate! Yes, I've had those symptoms, and yes, it took a long time for my diagnosis. Hang in there. It sounds like you have a pretty good idea what's wrong with you, so welcome to the boards! There's a lot of information here and some really nice people.

          Comment


            #6
            Hey everyone...thank you so much for your responses! As much as I didn't want to hear that my symptoms were MS-like, I figured as much. I have had enough testing and google search experience to know I'm probably in the right place

            So I just had my EMG, and for anyone who hasn't had one yet, it's really not bad at all. the shocks were weird -- not really painful, just strange to see my foot jerking without me forcing it to. I could barely feel the needles as well, just felt like a tiny pin prick.

            Anyways, the neuro who did the test said that everything came back perfectly normal, within normal ranges for all tests. It ruled out peripheral neuropathy, which is what my neuro thought it may be. So...now I go back to her on 12/22 and see what my next steps are. I think it's a skin biopsy.

            Does anyone know what a normal EMG/NCT really means? From my understanding, it means that MS is not ruled out because MS involves large fiber nerves? I'm totally confused on why or what that means.

            Comment


              #7
              Welcome madison243.

              MS affects the central nervous system, not the peripheral nerves. So basically, a normal EMG leaves the central nervous system as a potential root cause for your symptoms and therefore, possibly MS.

              It is really hard to wait. Try to take it a day at a time. I am glad your appointment is in the near future. Keep us in the loop. Take care.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Welcome, Madison. Yeah; limbo isn't a fun place to be. Although some members found an MS diagnosis difficult, I found it a relief because then I finally no longer had a mystery illness. Once I knew what I was dealing with, i was able to begin to make decisions about how to manage or treat it.

                I hope you get answers soon.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  Hey everyone,

                  Just had my follow up with my neuro and I have some mixed emotions. I told her all of my symptoms, and she basically told me to follow up with my GP and gastroenterologist, and she is referring me to a sleep doctor for my twitching at night/night sweats (she thinks I may have sleep apnea?! Even though I know for a fact I breath completely normally while I sleep and don't snore), she wants me to do craniosacral therapy for pain in my neck as she thinks that may be causing headaches, and she also wants me to do a skin biopsy to rule out small fiber neuropathy. And she prescribed me Gabapentin for the sensory skin issues.

                  She said she doesn't think I have MS, and if my skin biopsy comes back normal, she wants to treat each symptom as they come since there won't be an obvious cause. I think I'm just frustrated, because it seems to me that all my symptoms are related and I feel like I'm getting passed off.

                  Any words of advice? Maybe a second opinion?

                  Thanks!

                  Comment


                    #10
                    Hi Madison - Welcome to limbo! I recently posted for the first time and a fellow limbo-er. A lot of your symptoms sound much like mine. The big difference is that I ignored mine for years and you saw someone when something was wrong. I'm afraid I'm being taken less seriously now that I am trying to seek help because I didn't initially.

                    I'm curious how you would describe your "MS hug" feeling. I know this is different for everyone, but I get weird sensations in my torso that I have no explanation for other than that - often times super sharp feeling when I breathe in around my ribs, but sometimes presents differently.

                    I am feeling sort of what Mamabug says above - that a diagnosis may be somewhat of a relief at this point because at least I'll know. I honestly feel like the thing that scares me the most right now is not knowing what is wrong with me ever.

                    I hope you find answers soon, and while I've only been here a short time, I have read a lot of posts and many of them have provided me with comfort. Happy holidays!

                    Comment


                      #11
                      Originally posted by madison423 View Post

                      Any words of advice? Maybe a second opinion?

                      Thanks!
                      I would! Lots of us here have done so. It wouldn't hurt to have another opinion.
                      Craniosacral therapy for neck pain is not a bad idea either.

                      Hang in there

                      1st sx '89 Dx '99 w/RRMS - SP since 2010
                      Administrator Message Boards/Moderator

                      Comment


                        #12
                        I also would get a second opinion. Was your neuro an MS specialist? I am glad taking your symptoms seriously and exploring potential causes. I would follow up with the suggestions while also seeking the second opinion. Lots of luck.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Thank you so much ladies for your input and encouragement! My neuro is an MS specialist, and directs the MS program at the main hospital in the city I live in....So I'm inclined to listen to her, but at the same time, I couldn't shake the feeling that she was just brushing everything I said off. I will take her advice and get all the other things looked at, and see where that puts me.


                          Originally posted by BGSNOW View Post
                          I'm curious how you would describe your "MS hug" feeling. I know this is different for everyone, but I get weird sensations in my torso that I have no explanation for other than that - often times super sharp feeling when I breathe in around my ribs, but sometimes presents differently.
                          BGSNOW, I'm not even sure if it was an MS hug, but there were a few times where when I woke up, it felt like someone with large hands was squeezing my ribcage inward. It hurt to take a full breath and it just was very uncomfortable, lasted for about half a day each time. Sounds sort of similar to yours!

                          Comment


                            #14
                            Originally posted by madison423 View Post
                            Thank you so much ladies for your input and encouragement! My neuro is an MS specialist, and directs the MS program at the main hospital in the city I live in....So I'm inclined to listen to her, but at the same time, I couldn't shake the feeling that she was just brushing everything I said off. I will take her advice and get all the other things looked at, and see where that puts me
                            Hi madison

                            Your neuro, being an MS specialist and director of the MS program at the main hospital, is most likely sticking close to the criteria required for a diagnosis of MS.

                            You probably have already read the criteria, but I'll post it in case others are interested.

                            This is from the National MS Society website:

                            Criteria for a diagnosis of MS


                            At this time, there are no symptoms, physical findings or laboratory tests that can — by themselves — determine if you have MS. The doctor uses several strategies to determine if you meet the MS diagnostic criteria. In order to make a diagnosis of MS, the physician must:
                            • Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
                            • Find evidence that the damage occurred at different points in time AND
                            • Rule out all other possible diagnoses

                            The Revised McDonald Criteria, published In 2017 by the International Panel on the Diagnosis of Multiple Sclerosis, include specific guidelines for using MRI and cerebrospinal fluid analysis to speed the diagnostic process. The MRI can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as clinically-isolated syndrome (CIS). The MRI can also be used to confirm that damage has occurred at two different points in time. In some circumstances, the presence of oligoclonal bands in a person's cerebrospinal fluid analysis can be used instead of dissemination in time to confirm the MS diagnosis

                            Diagnosing MS | National Multiple Sclerosis Society (nationalmssociety.org)
                            PPMS for 23 years (dx 1998)
                            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                            Comment


                              #15
                              Hey everyone, I have a question about Gabapentin.

                              For those of you taking it, what did your neuro specifically prescribe it for? I know it's a drug commonly used for MS symptoms; my neuro prescribed it for all my nerve/sensory issues like pins and needles, itching, skin crawling, stabbing pains...I took it for the first time last night and it felt like my body had finally quieted down. Usually when I'm still, I feel something constantly (usually like my skin is crawling), but last night I felt nothing for the first in a very long time! Just curious if anyone else had experienced the same thing.

                              Comment

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