No answers to neuro issues. Need help!

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Insane story. Woke up one day a few months ago with dizziness, serious balance and walking issues, tinnitus, severe neck pain on both sides, peripheral neuropathy type symptoms, extremely distorted vision where everything seemed smokey and surreal, worst headache of my life on my left back side of my skull, muscle twitching everywhere and I mean everywhere, left calf and ankle numbness, erectile dysfunction, urination issues ( felt weird and sort of numb) and everything seemed so damned hard to do like taking a shower and brushing my teeth. It was serious effort. I felt as if my soul left my body and was having a serious bad acid trip or something. All my motivation and drive has been replaced with apathy and insouciance overnight. It was extremely concerning to me since I typically run 2 miles a day followed by 1.5 hours of weight training, so those little tasks are typically a nonissue. I was completely awestruck tbh. I thought I had a stroke, but after a CT scan revealed “no abnormalities” I guess I was wrong. Thereafter, I’ve had a cardiovascular nuclear stress test, visited an ENT, optometrist, immunologist/allergist, endocrinologist, urologist, two neurosand and one orthopedic surgeon, had 2 cervical MRI, EMG/NCS, all kinds of blood work drawn and other than slightly low testosterone, everything is clean.

My GP said it was anxiety/depression so I tried about 6 different SSRI/SNRI to no avail. To this day I have all the same symptoms and no one can put a diagnosis on it. I have not been able to work out, drive and mundane tasks are extremely difficult to perform, like going to the bathroom, making food and such. My job is suffering as is my family life. I don’t want to do anything, but research and sit in the couch. I’ve developed anxiety and horrible insomnia in the process. My life has been turned upside down and I’m struggling with hopelessness since no diagnosis has been identified and no treatment plan is in place. I’ve actually been feeling like my life is over and there's nothing else to look forward to.

Background: I'm 48 years old, very athletic, great family, great job, no history of depression, no major negative life events lately, don’t drink, former smoker, but took adderall for a few years, but it’s been over two years since I stopped (60 mg per day). Not sure if that’s the issue or not.

I’m lost and not getting any better. It’s putting everything I have at risk. Any thoughts or suggestions will be greatly appreciated!

thanks for reading…

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5 Replies

  • Posted

    hello Tim, i was sorry to read your story. Especially as im suffering some simular symptoms to you. Ive had MRI's blood work and an EMG and all clear.

    Have you ever considered Fibromyalgia? That is what ive been diagnosed with although Im sceptical.

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    • Edited

      hey Looby - yeah, we ruled out fibro. thanks for the suggestion.

      my GP thinks its long covid, but i never had covid.

      the strangest part is that i was fine one day and the next was as if i died and went to hell. when i woke up and experienced all these things, my brain went to suicide mode. it was frightening to say the least.

      all these tests show nothing. I'm scared as hell and don't know what else to do.

      i was thinking my dopamine somehow just pooped out on me. no idea, just doing tons of research to find some answers.

      what are your symptoms?

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    • Posted

      hi Tim, sorry for the delay.

      so my symptoms started overnight, it started with difficulty getting upfrom a seated position and thigh pain. GP diagnosed bursitis. Within a couple of weeks I had all over muscle pain and back pain. I could barely move some days. I also started experiencing muscles cramps/spasms, twitches and tremors and a strange sensation when swallowing. One evening I experienced a 25 minute episode of clonus in both legs. Terrifying. Saw the neuro, had MRI of brain,neck, spine, all clear. Had bloods done, low B12 and borderline underactive thyroid. Neuro diagnose anxiety and muscle tension!! The twitches continued, swallowing, cramps etc so i saw another Neuro. I told him i was worried about symptoms and was concerned about MND. He took a look at me and said you dont have MND. To put my mind at rest I had an EMG and all was clear. By this time id also seen a rheumatologist who diagnosed Fibromyalgia. The last neuro visit and the EMG were April this year. As of today, my symptoms continue, difficulty swallowing, muscle cramps, twitching, dry eyes and mouth. All if my joints crack when I move. I'm on anti depressants now as the symptoms are all consuming not to mention worrying. I'm still not convinced it's not something sinister but after 2 neuro visits, 1 rheumatologist, MRI, xrays and an EMG along with blood work all showing nothing nasty I feel I have no case to out forward other than the ongoing symptoms.

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    • Posted

      i am having all of those exact symptoms. Started with weakness in legs, then twitching everywhere. Excess saliva and hard to breath when i lay down. Neuro did an exam and said anxiety and didnt give me a muscle test. Waiting to get another appointment for a second opinion.

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    • Posted

      Hi Nicole, sorry to hear this. The 1st neuro i saw put it down to anxiety. Its such a brush off. When is your EMG scheduled? Are you UK based?

      Hope you get some answers soon 🙏

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