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Looking for answers

I am a new member to this forum. I don't have an MS dx yet but am searching for answers.

I am a 48 year old female. Have never really had any health problems up until October 2016. At that time I started having pain in my right hip and was taking Tylenol and Ibuprofen. Wound up going to the ER one morning because I was trying to get ready for work and almost fell down the stairs due to my pain. After a CT scan of my lumbar, was told I had spinal stenosis, bulging discs, was given a scrip for steroids, Tramadol and Flexeril and to follow up with a orthopedic doctor. Was given a Medrol dose pack to try to help with pain and inflammation, which didn't help. Wound up having a steroid injection for pain management, which didn't help. I was off of work for 5 weeks. Went back to work, RN was a nurse manager at a nursing home, on light duty to work about 5 hours a day, figuring I could take frequent rest breaks. Well, the day I went back, the DOH came in for annual survey, so needless to say the frequent rest breaks didn't happen. And then the second day was worse than the first, I was on my feet the whole time at work and by the time I left work, I was having spasms in my legs and severe pain and had to pull over a few times on my home, which was a 45 minute drive on a good day, crying most of the way. Once home my husband helped me get in the house, applied ice, took Flexeril and Tramadol. Eventually the spasms and pain went away and I was able to sleep well that night. When I woke up the next morning, I was unable move my legs and couldn't feel them. Off to the ER again, local ER thought I had a herniated disc and sent me to another hospital. I was there 8 days, no herniated disc, after multiple tests, had no definite diagnosis of cause, eventually regained ability to move legs and stand and then walk very slowly. Went to acute rehab for 2 weeks, then outpatient rehab, then eventually back to work. This time I was working on the floor due to being off so long, they had to hire another nurse manager. Then decided to look for another job, closer to home and not doing patient care or pushing a heavy medication cart. Then after a year moved onto an Assistant Director of Nursing at a nursing home, and eventually promoted to Director of Nursing.

So in December 2018, I started having extreme pain, was at ER 3 times in 4 days, nothing significant with my spine was found. Started outpatient therapy and continued to work. End of January 2019, finished a session of therapy and had tingling in my legs and then my arms, was barely able to walk, son drive me to ER. They didn't have any clue, so sent me to a hospital in city, not any answers. They eventually did an MRI of lumbar and nothing significant found. Developed severe headache after a couple days, did an MRI of brain and cervical without contrast, nothing significant found at that time according to report. But I got a CD with the MRI's on it and there are a couple of bright areas noted in occipital lobe. Then developed severe chest pain and tachycardia, felt like someone was giving me a tight hug, hospital did a CTA of chest to rule out PE and aortic dissection. Gave me Morphine IV and chest pain and headache went away. MD's came in the next morning and told me they were discharging me. I could barely walk and was in pain my legs were tingling and I cried the entire way home.

Employer fired me a couple days later, because I had asked for a leave of absence so I could get addition testing done. That was the beginning of February 2019. Had echo, NCV/EMG, pelvic ultrasound, 24 hour holter monitor, 2 week heart monitor, tilt test, blood work. EMG/NCV study results came back with neuropathy, and decreased nerve reactions in legs. The end of March 2019, woke up and couldn't move my legs, called squad, took me to ER, sent me to a hospital in the city and did lab work, but no other testing. Saw a neurologist a couple times, was discharged and sent to acute rehab for 11 days. While there, went to neurologist appointment that was originally set up from prior hospitalization and that is when I was informed of the neuropathy and indication of pinched nerves, started on Gabapentin, which seemed to starting helping the burning pain in my legs. While at that appointment and the neurologists I saw while in the hospital, they all did neuro exams on me, and when I couldn't respond normally they would all keep having me repeat it until they got some response. For example, reflexes, they would keep testing the reflex in knee or ankle until there was a response from me.

In the past months since December, I have been told there is nothing wrong with me, heart checks out fine, women parts check out fine. I was told by my PCP, I am depressed, its in my head, I have anxiety. And offered antidepressants, which I refused. I have been researching various things, because my gut tells me something isn't right with me.

I have noticed in the past year my memory isn't sharp like it use to be, I forget where I put things, I forget what I went to the store to get. I fall often, though this week has been good. My legs hurt, more so than normal, I was been doing a few things outside, but the pain isn't muscle pain from overuse, it just feels different. I have tingling in my legs, pelvic region. Numbness in my legs and I drag my foot sometimes.

A couple weeks ago, I started being incontinent of urine, went to the ER the next day, because I didn't want to delay if it was compression of spinal cord. They in turn contacted neurologist, did an MRI of lumbar without contrast and was told to just go home and wear diapers and follow up with a urologist. I chose instead to contact Cleveland Clinic and was able to get in with a spine specialist the next day, who after going over symptoms and history, was told it was most likely irritated nerves and started me on Baclofen twice a day. After a few days the incontinence went away. I still haven't made an appointment with urologist, don't think my problem lies there.

I'm not sure where to go from here, I know that I most likely need a lumbar puncture for MS dx along with an MRI of brain and spine with contrast.

I am sorry this is so long, but hoping to get support and advice as to where to go from here.

  1. Hi @coco1925,

    I'm so sorry to hear that you've been experiencing such debilitating, painful, and unexplained symptoms for so long. Sounds like this has really changed your life.

    My initial thought upon reading your story is that you have finally ended up at the Cleveland Clinic. They have an excellent MS specialty if your doctor thinks that it an avenue to explore. A consultation with them regarding possible neurological disease wouldn't hurt.

    Hoping that you can find some concrete answers soon.

    Best wishes,
    Lisa, moderator

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