I had my followup appointment with my neurologist today. She was able to run the necessary tests from my lumbar puncture. Everything came back negative – no MS, lupus, or infectious diseases. The lab took blood to test my Vitamin B12, homocysteine and methylmalonic acid levels to verify that they are stabilizing.
I asked why my lumbar puncture produced so little fluid and she said the tip of needle was probably pushing against the side of the dura that covers the spinal cord.
I am feeling much heathier after a month of B12 shots. The numbness and muscle weakness are gone. The electrical sensations in my back and legs are much reduced. My energy has improved a lot and my physical endurance is starting to improve. I can make it through a yoga class or a 3 mile walk though riding my bike is still hard.
In the end my neurologist said that B12 deficiency is the likeliest explanation for my issues. There is a small chance that I had a transverse myelitis attack, which can produce the same symptoms and spinal cord damage that I experienced. There is no test that can detect transverse myelitis after remission. However, TM will sometimes recur or progress to MS. Therefore, my long-term prognosis is good but if I re-experience any of my original symptoms I’ll need to see my neurologist immediately to be examined for TM and MS.
So this is hopefully the end of the road. Thanks to everybody who has given me support, happy wishes and distractions during the scary times. I love all of you very much!
Phew! Welcome back to health!!!
Awesome news Kerry!!! Big Hugs from Dawn and I!
YIPPIIEEEE!!!
That’s fabulous! I’m glad you were able to recover so well and got through it all.
Thank you for sharing your story. I am just starting down the path of something that seems somewhat similar.
I, too, have felt rundown and have experienced increasing muscle weakness for a while now.
About a year and a half ago, I started getting a numb, cool feeling in my upper left arm. I mentioned it to my doctor, but we could never come up with a reason for it.
Then I starting experiencing a similar sensation in the first three fingers in my right hand. I assumed that it was carpal tunnel or an inflammation of some kind since I am a programmer and spend almost my entire life at the keyboard.
Just recently, I started experiencing tingling/numbness in my feet and hands. This prompted me to start taking my symptoms much more seriously.
My doctor ran all kinds of blood and urine tests. Additionally, he sent me to a neurologist. The neurologist does not immediately see a pattern to my symptoms. I have to go back next week for an EMG to test the nerves in my arms/hands and legs/feet. Also, he is sending me for an MRI of my brain to rule out things like MS, etc.
After my first appointment with the neurologist, I had an appointment with my primary care physician. He told me that he thinks that my symptoms are caused by a B12 deficiency, but that we should continue looking for other causes anyway, just to make sure. He gave me a B12 shot.
That was last Saturday… Within the last few days, the numbness/tingling in my hands/feet has subsided a bit.
Now I am wondering if I should be receiving more B12 shots and/or if I should be taking B12 supplements. I don’t want to lose any of the improvement that I have experienced over the last few days. I’m going to call my PCP tomorrow morning to make sure that we are doing what we should be. In addition, I’ll do the EMG and the MRI. Hopefully that will be the end of the road for me with this (besides the potential B12 booster shots and/or supplements).
I just wanted to thank you for sharing your story. It’s comforting to know that someone else “out there” has shared some of the same experiences.
Thanks,
Karl
Karl,
I’m glad that my story was helpful. When I was finally diagnosed with B12 deficiency, my neurologist prescribed me B12 shots 2x/week for a month and then 1x/week for another 3 months. I started to feel better right away and am about 2 months into the regimen now. If your first B12 shot seemed to help and your tests showed B12 deficiency, it sounds like a great idea to call your PCP to inquire about getting more.
If it takes a while to get in to your doc, you can find B12 supplements from most pharmacies. The 1,000 microgram sublingual supplements have the most bioavailable B12 of any over-the-counter supplement. There’s no harm in going this route – your body sheds whatever you can’t use. However, the B12 shots are absorbed much more efficiently so if you’re deficient it’s good to keep taking shots if your doctor recommends them.
Best wishes for the remainder of your tests – I hope you are feeling better soon. And please let me know if you have any other questions. My e-mail address is rhiannon314 at gmail dot com.
– Kerry