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Frustrating and bizarre journey

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    Frustrating and bizarre journey

    Hello! I’m not sure where else to turn. The journey so far has been most frustrating, to say the least, I apologize ahead of time for this background/venting being so long.

    It started August 2018. The first episode I was driving on an interstate, my entire body ‘jolted’ like I stuck my finger in an electric socket, as I was exiting the interstate, I pulled over. Things haven’t been right since. This is the beginning of nine months of vertigo and all manner of bizarre symptoms.

    After this happened I went to my PCP, who ran an ekg, ordered numerous blood work to check my vit levels, specifically vit D and b12. I had recently recovered in 2017 from a severe vit D deficiency (blood level 8.) Was also tested for Lymes (negative every time.) Everything came back normal, but during the visit I showed neurological concerns specifically with my eyes and balance.

    Fast forward a week, and my coworkers are calling an ambulance when I experienced whole body parasthesias and wicked increase in vertigo. Some labs and a chest xray were performed, and I was sent home with information about parasthesias and inner ear issue, and a prescription for dealing with the vertigo. My follow up with my pcp was the next day, and he put me on a medical leave with a referral to a neurologist.. I was also evaluated at our local center for dizziness and balance disorders two days in a row, stood on the machines and ran that gauntlet. Their recommendation was to see the neurologist as they ruled out inner ear issues and determined it was centralized.

    The appointment with neuro was ok, he put me on a low dose of topiramate and sent me for a head MRI w/wo contrast and an EEG. Radiology report was normal, EEG was normal. Also labs to check thyroid again, b12 (which shows I’m depleting it now) and more autoimmune labs (all normal.) More waiting and back and forth with the neuro. My reflexes when checked were all over the place. The symptoms are random tremors, muscle spasms, electric shocks starting in my neck and sometimes spreading like a lightning bolt would, vertigo, pins and needles, numbness and other odd random skin sensations (sometimes like ‘phantom limb’), vision issues in right eye, balance issues, leg dragging intermittently, dropping things, memory and cognitive issues (can’t find words, speech sometimes messed up, etc) and soul crushing fatigue that I describe like being drugged and feeling that sensation in waves throughout my body while trying to walk through quicksand.

    I also feel like I have to give my hands, arms, and legs encouragement to function properly. He asked me how I could tell which eye was going blurry. I also asked him to look at my records for when I completely lost vision in my right eye in 2016, was misdiagnosed with ‘pink eye’ and given an eye drop it turns out I’m highly allergic to (including all sulfate meds we’ve learned), which caused the vision loss to almost be permanent and severe swelling (uveitis.) It took months for it to come back, and we never to this day discovered a cause to the initial random loss, no one even the eye doc has any answers or ideas for that.

    To this day, nothing has changed. I had periods of decent days, then it would hit out of nowhere and incapacitate me, but some times I feel like it’s just progressively worsening. I had an emg test which was somewhat normal (mild ulnar neuropathy showed) but only on my left side, despite my right side being at times worse. I went for a second opinion, this doctor told me I must be “hyperventilating” my husband and I both looked at each other and back at him, and mentioned the possibility of MS, but radiology report was normal, they also put someone else’s vitals on my record that I had to fill out a HIPAA amendment form to get removed.

    I then had a whole spine MRI ordered w/wo contrast. The radiology department refused to do the contrast, they said it wasn’t needed. This showed some disk generation in neck and lumbar and a mild herniated disk in neck. They said it wasn’t severe enough to cause my symptoms. I headed for a neurosurgeon who specializes in spinal issues and brain surgery. He read my scans and discovered the brain MRI I had in September showed “small punctate white matter signal changes” he put in his report and inquired about lymes testing and symptoms.

    Since then, my one MRI has been hotly contested among doctors with no one willing to order another one. He ordered a nuclear speCT bone scan of my spine, which came back quite normal with very mild uptake in a couple of disks. He said there wasn’t anything he could do, and sent me on my way. I then soon after had a follow up with my PCP who was quite frustrated I’ve been bouncing around and getting brushed off, he could see how this had affected me as much of my symptoms are quite visible (sometimes I have to use a cane...) He inquired if anyone had mentioned MS and wanted to send me to Penn State Milton Hershey, he thought they still had an MS center, turns out they do not as I found out when we arrived just two days ago for my appointment.

    So this doctor, as soon as he walked in, insulted my mother, and my husband, had me in tears, my hubby was fuming, my mom was speechless. He ripped out all of my records from my binder, said there’s no way a radiologist would make a mistake, “they don’t make mistakes” he said. After being what felt like criminally interrogated, he said there’s no way I had that and that I have fibromyalgia. I told him, I know that I was diagnosed with that a long while back and tried and failed treatments then due to severe medication sensitivities that are well documented in my records, all of which were sent to him. My diagnoses then was due to low back pain, fatigue (definitely not fatigue like this) migraines, and random like pressure point pains. He insisted on writing a script for Effexor and gabapentin for that, despite my protests. I said look, perhaps it is not MS, but it’s something, I wouldn’t be here if it were just the fibro. He said since I was in the clinical field, I’m too well versed in some medical terminology to “my own detriment.”

    He wrote a referral for the center for dizziness, which I’ve already been to who bounced me back to neurology…he didn’t believe me, I tried showing him the report. I wasn’t surprised, since he argued with me about who my PCP was, insisting it was someone I’ve never heard of before. I am actually starting to wonder if they had me mixed up with someone else, like signals and records got crossed. We left, and let them know we would not be back.

    AT this point I lost my career I worked hard for after exhausting all of my sick, vacation, personal medical leave weeks, and FMLA weeks, and had to leave grad school because I couldn’t remember my readings and went from straight A’s to can’t spell what feels like over-night. Quite frankly, this is scaring me, and I do not know where to turn next or what to do without looking crazy for “doctor hopping” as it’s called around here. I now have anxiety, starting to feel depressed, and now mild bladder issues. I’m not sure how much more fight I have left.

    So in summary, I have a contested MRI, a doctor who thinks it’s likely MS, and two more who said it’s virtually impossible, and no one willing to do new scans or other tests. The dx on the MRI order was headache and tremors, I believe. Current running dx’s are migraines, Lhermittes sign positive, fibromyalgia, parasthesias, myoclonus, and “dizziness and giddiness.” I do not know what is wrong with me, but something most certainly is. I’m 35 years old and losing my independence, and something is causing it, but no one knows what.

    Dear stargazer,

    First, I want to welcome you to MSWorld and to thank you for pouring out your medical history thus far. Wow, you have been run through the proverbial mill! I am so sorry.

    I have read other accounts of others here who have myriad symptoms and had different Dr. diagnosing them with myriad conditions. Sometimes, getting a clear and definitive dx of MS can take a long time, as many others conditions must be ruled out first. All in all, it can be a frustrating roller coast of a ride! I was misdiagnosed for 10 years, but that was a long time ago and nowadays they have better diagnostic tools.

    I might suggest you find a teaching hospital near you to do further testing on you. Clearly, something is not right and needs to be addressed, be it MS or something else. You poor dear, you must be at wit's end!

    This article from the Nat'l MS Society spells out what is needed for a definitive dx of MS. I hope this is helpful for you.

    Keep posting here on MSWorld and sharing your journey.
    Wishing you peace and wellness!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator


      Hello stargazer83 and welcome to MSWorld

      I can certainly see why you would be frustrated.

      Have you been to an Ophthalmologist regarding your vision? If not I would like to suggest doing so, PCPs really are not all that knowledgeable with vision problems.

      Lhermitte's sign can be common in those with MS but is not exclusive to this disease. When related to MS Lhermitte's sign is caused by lesions on the cervical spine (neck). Brain lesions do not cause this symptom.

      The radiology department refused to do the contrast, they said it wasn’t needed. This showed some disk generation in neck and a mild herniated disk in neck. They said it wasn’t severe enough to cause my symptoms.
      This could very possibly cause Lhermitte's sign. Information about Lhermitte's Sign:

      Just a little information about MRIs and the use of contrast: Contrast will only "light up" active lesions (inflammation) but will not show any thing that wasn't already seen (or not seen) on the MRI without contrast.

      There is no symptom(s) exclusive to MS, there are other conditions that mimic the symptoms of MS and will need to be ruled out. Information about some of the other conditions that mimic MS symptoms:
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic


        Hi Seasha and Snoopy,

        Thank you for the replies and information!!!


        I went to the eye doc/opthamologist, where I was given a dose of steroid eye drops to bring down the inflammation caused by the gentamicin sulfate. Even made part of my face swell, it was a horrible reaction. I think the most frustrating is while a laundry list of things have been ruled out, something is definitely very wrong. I feel like it's just bizarre that my one and only head scan is being debated,

        I'm very willing to go back in the machine for a second look to settle it, it's been 8 months- they are either there or not there. The disk may be causing the shocks, I do think it's possible, but the docs do not. It's barely noticeable on all the imaging but I'm certainly not ruling it out. We've ruled out most on the list. I do have spondylosis in my lumbar spine, that was found a few years ago when xrays were ordered on my lumbar and c-spine.

        Spine issues run in my dad's side and autoimmune disorders on my moms. I know it doesn't necessarily mean that's my fate, but I see what it does.

        For the other conditions, only some have been ruled out. The nuclear speCt bone scan apparently ruled out spine as a cause (still up in the air) Ruled out any current deficiencies, infections, and tumors. Ruled out Lupus and RA. A lot of what is on that particular list the doctors never mentioned at all.

        I am looking into going to University of Pennsylvania/Penn Medicine. It is a bit of a distance for me, but my understanding it's well worth the travel. Where I live has a very terrible medical reputation.


          Originally posted by stargazer83 View Post
          I am looking into going to University of Pennsylvania/Penn Medicine. It is a bit of a distance for me, but my understanding it's well worth the travel. Where I live has a very terrible medical reputation.
          An excellent idea! Let us know the outcome and in the meantime, stay well!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator


            Try to go to a more serious hospital, there are no guarantees, but changing specialists sometimes helps. Another look at the situation is necessary.

            Sign up with a psychologist, you do not lose anything, besides you indicate that you begin to have frustrations, you must stop them.