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.
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.
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