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Lost and terrified. Does anyone have words of encouragement?

Crazy situation and I don’t know if I am in the right place. I've possibly had MS since childhood, but have had no diagnosis yet and am nervous about tests. I have done so many tests and everything says I am healthy with minor findings such as rare arrhythmias on an EKG.

My symptoms started when I was a child

The story starts like this – when I was a child around 7 or 8 I had pains in my legs. Parents always told me they were growing pains but my siblings and other kids didn’t have them. Whatever, right? I would also wake up in the middle of the nights crying with a migraine and not even realize I was awake and crying until my mother would walk in asking what was wrong. I would get shock sensations constantly on my neck, like burning shock that I could feel down my spine and in my head. I have always had coordination and balance problems and have always been in a brain fog. Back then Google wasn’t a thing and my mother didn’t listen and called me a hypochondriac.

My brain MRI came back normal

I’ve gone my whole life trying to be normal and refusing to admit anything was wrong during my periodic flare-ups every few months. Fast forward to now, December I became completely debilitated. Extreme lethargy, weakness, severe pain everywhere, still have shocks in my neck, some days unable to walk from pain and stiffness. Tremors, confusion, dizziness especially during a migraine, knees cave underneath while I’m walking, constantly losing balance, restless leg syndrome, ringing in ears, tingling in hands and feet, high lymphocyte constantly and I don’t know why, twitchy muscles all the time several times and hour, jerky movements, Short Term memory loss (several times an hour), cannot spell basic words at times and cannot read them (I have always been very punctual), slurring words, feels like there is a ball of mucus in the back of my throat I can’t get rid of, drooling on the sides of my mouth, biting my lips, cheeks, tongue while chewing everyday, and my upper spine was swollen a couple of weeks ago randomly - no injury, just appeared one day and felt like my spine was on fire and the skin on my spine was swollen to the point that my daughter could press her fingers in it like memory foam. There are other symptoms too but I won’t list them all. Brain MRI was NORMAL. How? I don’t understand. He immediately dismissed multiple sclerosis and did not do further testing so I have not had a spinal MRI or lumbar puncture or anything else. All blood tests rule out rheumatological autoimmune and others.

This can't all just be in my head

So I guess I am just here for support. I don’t know if I have MS, but literally, the only tests I have not had to date are the lumbar puncture and MRI of the spine and other corresponding tests. But I am extremely discouraged because my brain MRI was normal. I have not been able to work since December because of this and it keeps getting worse. I don’t know if I’ll wake up in the mornings half the time and I have a family and career. We are struggling so much financially because I can’t work and I don’t even have a diagnosis to know what’s wrong with me. This can’t all just be in my head... why would my spine swell if it was in my head? And I just can’t understand how my brain MRI was normal.

Seeking encouragement

I feel so lost. I am just looking for words of encouragement if anyone can provide. I have an appointment with a new neurologist the first week of April and I am so nervous because I have done so many tests and found nothing to diagnose me so far. And I feel so horrible every day I just need help and can’t without a diagnosis. This is my last hope for answers and treatment so I can get better. I don’t want any disease or illness, but I do want answers. When all this first got bad in December my husband immediately thought of MS because one of his friends had it and it seemed similar. I have gone through so many hoops trying to rule everything else out since my brain MRI was normal and have successfully done so.

Terrified of "normal" results and no answers

I am just having a hard time believing that if I have MS it’s localized in a rare place like the spinal cord and I may or may not have had it since childhood. What makes me so different to have a rare disease in an even more rare way such as in the spinal cord? There are a lot of very rare cancers and diseases in my family, but I don’t know if that has weight. I am just skeptical because my last hope of finding out what’s wrong is increasingly becoming less likely, and I am terrified the doctor will come in with “normal” results and I will never know what’s wrong. Thanks for reading, sorry for the length.

  1. Hi rpatrick2213! I am sorry you are still working to find a diagnosis. I know that can be incredibly frustrating. I think you are wise to keep pushing for answers. I will say that generally, a diagnosis of MS is reached with a number of diagnostic tools, including an MRI showing lesion activity. So, if you do not have any lesions on your spine or brain, it may lead physicians to decide that you are not dealing with MS. Here is some information on the diagnostic process --

    Also, physicians will rule out a number of conditions that may mimic MS symptoms. You may want to see if any of these conditions may be a possibility --

    I wish I could offer you some magic answers as to what is going on with your body, but, unfortunately, I can't. Though it may be exhausting, hang in there and don't quit advocating for yourself and your health. You deserve a diagnosis and treatment.

    Please keep us posted on your situation, if you feel comfortable doing so. I hope you get to the bottom of this very soon!

    Best, Erin, Team Member.

    1. Hi, yes I haven’t done the spinal mri or tap yet. So there may be something there that we haven’t discovered. Especially when my upper t-spine just swelled the other day abruptly and then went away on the second night suddenly within an hour. It was very strange, but I would imagine at that point my spinal cord is involved somehow. Those things don’t just happen to normal and healthy people. It was also very painful and felt like my spine was on fire.

      We have already ruled out several of those diseases on that list. It’s not any rheumatological disease. My ANA was negative on a very sensitive test and so was everything else. I am hoping I’ll have answers soon, I see the new neurologist in 3 weeks! If nothing else I have a ton of tests with random findings and I can try the undiagnosed disease network at that point!

      Thank you for your response 😀

  2. Hello - I finally have a diagnosis. It is not Multiple Sclerosis. It is the final stage of Lyme disease. I never connected the dots before because I had been so young, but I did get a tick bite in the 5th grade, got a bullseye rash, and got sick after right before my symptoms started. I became so weak and I couldn’t fight anymore. I gave it to god, and I have always been a skeptic. But something about feeling like you are dying brings out spirituality. Suddenly I remembered it all, the memories just rushed to me. I went to the doctor and got the ELISA Lyme test... came back negative. I didn’t think that was right... at all. So I did research... the test is completely flawed and the CDC lies about its accuracy. I found a doctor that did the correct tests... CD57 and western blot without the ELISA. That’s when the “Lyme light” showed, and it was positive for not only Lyme, but co-infections. I have had it for 22 years, it is in the process of killing me, and I am trying to survive until I get my PICC installed next week. Words cannot describe the pain and terrifying symptoms I am enduring. I have found out a ton about the CDC publishing false information about it. They say only 9 people have died since the 1980s from it... false. It just doesn’t get recorded as Lyme. People die every year. Their test is severely flawed, but they encourage its use. They lie about the duration of antibiotics needed. They lie and say it can be cured.

    I do not have Multiple Sclerosis. I have end stage Lyme disease with co-infections, and I may not survive, but I pray I do.

    Thank you for publishing my post and listening. Good luck to everyone dealing with MS. And for anyone questioning if they have it, don’t rule out Lyme without the test. The correct test is not the ELISA. That tests negative most of the time even when you have Lyme. The CD57 and the western blot without the ELISA are the correct tests.

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