Old 11-22-2018, 11:41 AM #1
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Default Numbness, muscle twitching, and no diagnosis? Read this.

This post is for those who are currently experiencing numbness and muscle twitching and, like me, tend to automatically assume the worst case scenario.

I felt compelled to write this a year and a half after first experiencing neurological issues because #1, it seems that a lot of folks who have similar undiagnosed conditions simply "disappear" online (hopefully that means they've gotten better), and #2, I am still alive after a year and a half, so my goal is to give hope to anyone who is experiencing similar symptoms and have not had any luck with a diagnosis.

First things first. If you have not seen any neurologists, stop reading now and don't do any more research until that appointment. Otherwise, you will go through torturous anxiety and sleepless nights as you try to self-diagnose and likely settle on the worst-case scenario. My post is for those who have had all of the tests done and seen multiple doctors and still have no diagnosis.

My two biggest, longest lasting symptoms were (and occasionally still are) numbness and muscle twitching. It started off as numbness in my left toe, slowly progressing to my left foot, left leg, left arm, left side of the face and even the entire head at times (rarely all at once though). I started getting it in the right side of my body occasionally, but there it typically stayed in my right fingertips. The twitching also appeared in various parts of the body, but really chose to settle in my right arm between my triceps and elbow. It twitched nearly nonstop, 24/7 for 4-5 months straight. While these were the longest lasting symptoms, I encountered a TON of other symptoms. While concerning, these didn’t last months like the numbness and twitching. I will include that list below my signature.

During about a year’s time, I had 2 MRIs on my brain and neck, two different EMGs on both sides of the body, strength tests, probably a dozen or so various blood tests, and an EKG. Everything came back clean. I saw 2 different neurologists and 2 different general doctors. None of them could piece anything together. One of my neurologists wouldn't even look at my twitching arm. “If you can do a push up, sit up, and squat, you don't have ALS,” he assured me. So while every doctor failed to come up with what was going on, none of them seemed overly concerned. In a way, it is a relief to know your doctors aren’t concerned. On the other hand, if they don’t know what it is, then how do they know it’s not fatal?!

Before I move on to what finally “cured” me, I need to pause and say… trust your doctors, esp. if they are all saying the same thing. Spending a few hours or even a few days researching WebMD, message boards, etc., does not put us on the same standing as neurologists who have spent YEARS studying these conditions. You have to trust them and have a little faith, esp. if they are saying you are OK. I also know that none of what I’m saying is truly going to convince you that you might not have a terrible disease - I wasn't able to be convinced at first either. They only thing you can truly do is wait it out.

OK, the good stuff. By a fluke chance, I shared my issues and concerns with a co-worker, who suggested that I see a particular doctor in Houston who has a knack for diagnosing things that other doctors can’t. I didn’t get my hopes up but decided to go see him anyway. He took a look at all of my test results over the past year, sent me for a couple more random blood tests, which came back clean, and then told me that he has seen what I have before. It doesn’t even have a name yet! It is a virus and has a transient nature, which explains why the symptoms manifest in different ways and in different places. Furthermore, it is going to take a couple of more years to fully get it out of my system. Annoying? Yes! But at least he gave me hope, which is something I couldn’t get anywhere else. He told me that it’s hard to do, but if I could find a way to laugh with the twitching, to do so (I know, that is impossible), because while with some diseases, twitching is a bad thing, in this case, it is a good thing and is my body’s way of rewiring itself so to speak. So, I’m still not filling confident at this point, but he said he wants to start me on prescription grade magnesium (Mag Oxide, 400 mg), and that if that doesn’t help with the twitching, that he had a less conventional idea. Well, to my surprise, one or two days after taking the magnesium, the twitching stopped almost completely! Mind you, none of my previous tests showed any sort of magnesium deficiency. As a side note, I will still get random twitches every now and then, but they are usually short-lived and nothing more than just a few seconds. But the nonstop twitching has been gone for probably 8 months or so. (I still wonder what his other idea would have been if the magnesium wouldn’t have worked!)

So anyway, if you are in the same boat as I am/was, not finding any results and all of your tests coming back clean, ask your doctor if he can try you on a high dosage of magnesium. You certainly don’t have anything to lose.

I want to end this with some self-reflection that has come out of this ordeal with me. This was an extremely scary season for me and forced me to ask some tough questions about life and what really matters. What I learned was whether I have a neurological disease now or not, the fact remains that at some point, I AM going to die. In the grand scheme of things, it doesn't really matter if that happens while I am young, middle-aged, or old... the same fate awaits us all. Depressing, yes, but true nonetheless. If you are battling an unknown condition and have extreme anxiety and fear, my advice is to take this time and current health scare to settle the score now. Are you religious? Find out what you truly believe and hopefully this strengthens your faith in the end. Religious or not, try to find beauty in the day to day and focus each day on what truly matters. If and when you come out of this ordeal, be it a year or longer, come back and share your story with others to give them hope. And please don't forget those who truly are suffering with serious diseases such as ALS. Pray for them, encourage them, donate to ALS research, volunteer your time, etc. All the vows you made and said you'd do if only you didn't have the fatal disease? Do them. <religious content removed>

Good luck!
DC

Other symptoms besides numbness and muscle twitching:

Long lasting: High blood pressure; rash in left armpit that lasted months but eventually went away; Left leg tingly, almost like an internal vibration; Psychological issues (Anxiety, Stress, Detached feeling, Overwhelmed, Fear)

Shorter lived: Sensation of lump in my throat, slow swallowing, sometimes with a dull pain that came and went; Muscle and joint pain (shoulders, calves, right arm, muscle near thumb on right hand, finger joints); Waking up with right little and ring fingers completely numb; Electric jolt-like feeling in right side of neck; Loss of appetite and weight loss; Insomnia; Fatigue; Palpitations; Light headed; Stammering for words; Neck pain; Chest pains

Last edited by lgelb : 11-22-2018 at 01:44 PM
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Old 11-22-2018, 01:42 PM #2
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Default Re: Numbness, muscle twitching, and no diagnosis? Read this.

Thanks for stopping by. Since you know you don't have ALS (both great things -- that you don't and you know it), closing the thread. All the best.

Best,
Laurie
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