Lower Motor Neurons

[MHJ1]

The spinal tap could show a lot of things compared a normal blood-test. Such things as cronical Lyme and heavy metal poisoning can be detected in a spinal tap and your previous muscle pain maybe can be explained by that. Please let us know when your testresults are ready.

 

[paleshia]

they do a blood test for mmn but it wasn't in my first panel of bloodwork, and it takes a little longer to get those results usually. the first set of labs was probably looking for heavy metals, blood counts, etc. just call and ask if they are testing you for mmn. the only reason they sent me for the spinal tap was the surprise lesions on my mri...they weren't expecting those. do you have any upper motor neuron signs? keep hope, there are lots of diseases to rule out...most that are treatable mind you. keeping you in my prayers.

 

[Oregon Native]

I received the last blood panel results a few weeks ago, took about three weeks and came back normal. The Dr said he was going to do the spinal tap for my peace of mind so I knew that we have tried every test available. Watched that tv show last night, Live For The Moment, the gentleman with ALS Roger Childs, seemed to have his progression, in the hands and arms as I do but a bit more severe. Mine has been happening for a year and his for three, but then again maybe i'm getting ahead of myself before i've even had the spinal, I just wish the Dr hadn't of felt so strongly about it.

 

[paleshia]

sorry about all your going through, we've been there. i had them check for lyme and celiac too. what do they say about upper motor neuron stuff....reflexes and all? don't be afraid to ask for copies of the doctor's reports.

 

[KANSASTOM]

I have had trouble swallowing breads, you know that, stuck in your throat, type of feeling for ten years now. I also have only lower motor neuron involvement, currently monomelic amyotrophy diagnosis, but I really feel I probally have something more like a adult onset spinal muscular atrophy. Do you have any upper motor neuron symptoms?

 

[Oregon Native]

Paleshia you are very kind, thank you! Kansastom thank you for your reply, i was researching monomelic amyotrophy, it's just crazy how many different forms of motor neuron diseases there are. I've had two emg's the first DR only did an emg and told me he didn't think it was ALS cause it had to be upper and lower motor neurons, he referred me to this neuro and the neuro said it was lower but looks like it was more toward ALS than anything else, after all the bloodwork and urine analysis. I went target shooting yesterday and my shoulder and elbow, and finger joints are very sore, looks like I might need to slow down a little.

 

[KANSASTOM]

There are a few lower motor neuron diseases it could be, an adult onset of Spinal Muscular Atrophy and then there is Primary Muscular Atrophy it progresses faster than SMA. I feel like I am in a holding pattern here just waiting to see which runway I am going to land on, it has been almost two years now, with little to no progression. I hope yours turns out to be lower motor neuron only with slow progression. How are your feet doing?

 

[Oregon Native]

That is great news that your progression has stopped or almost stopped. My feet are usually fine, they might have lost a little muscle but I really can't tell as I work on concrete all day and they have hurt for years each day after work. My legs still have a lot of muscle tone and very even, but i've been getting occasional cramps lately in them and my feet, with the fascillations pretty much non stop. My hands look skeletal with my muscles pretty much gone, especially my thumb muscles and pads, I weigh about 123 lbs so you can definitely tell, my arms have lost quite a bit of muscle as well, there are indentions on each side of my elbows now, it looks really strange. Kansastom, how did they come to their conclusion on your diagnosis?

 

[KANSASTOM]

My lower left leg and left foot are probally similar to the way you describe your hand and arm. I noticed about three and a half years ago that I could not move my left big toe anymore, at the time I didn't think too much about it at that time. But then I started to lose the calf muscle and the muscle in my left foot. Of course the alarm bells went off and I went thru the usual battery of tests, most normal except for the emg's and a herniated disc in my lumbar region. I had two emg's one on the lower part of my body revealing a lower motor neuron problem, this was kinda of cloudy since the disc herniation could also be causing the same result. Then I had a emg of the upper portion of my body revealing some positive sharp waves and fibrillation potentials suggesting some sort of denervation ongoing, but not to the degree of the lower part of my body. I was first diagnosed with ALS from a neurologists, then later with Monomelic Amyotrophy from the Dr's at the MDA clinic. My muscle tone in my leg is also very floppy, like you describe in your arms. Have they ruled out Multifocal Motor Neuropathy for you aslo my family history plays a role in this, since my grandfather and father both have some sort of debilatating disease that affects their limbs. My father is now 76 and my grandfather was 89 when he passed of a heart attack, so it is a waitng game for me now.

 

[Oregon Native]

My mother has MS, she was diagnosed in the late 80's but it hasn't really ever effected her too much, just stiffness and some pain. I feel pretty good overall except for the cramping, minor pains, and mild fatigue. Thank you for sharing your stories, I'm praying for a good outcome from the spinal tap, I will let everybody know when I find out anything. Kansastom, the most recent news sounds promising, I hope you'll keep me up to date.

 

[KANSASTOM]

I have the cramping too, mostly at night and the fatigue but overall I function pretty well still can do almost everything, just not as fast. Progression is the key, I believe there is spectrum for these motor neuron diseases all with different progressions and sometimes plateaus. Good luck and keep us posted.

 

[Oregon Native]

Today I received the results from the lumbar puncture, it came back normal, nothing wrong with my spinal fluid. So it's official i'm diagnosed with Lower Motor Neuron disease. Going to see an ALS specialist in Portland soon for a second opinion. Thank you everyone for your prayers.

 

[Twinsmom]

Hang in there. Just try to stay in the moment and keep your head from going to all the "what if's"...

Peace & prayers,
Melody

 

[Oregon Native]

Thank you Melody, i'm just living in the moment now, enjoying each and every day with my family. I just went skiing for the first time in years, very very sore today. Going in for my second opinion soon, hoping for a different diagnosis, but also not trying to get my hopes up to high.