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JEB1979

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Hello, everyone. I found this forum while looking specifically for an ALS support group, as I'm afraid I may have the disease. I know that the disease progresses differently for everyone, so I'd like to give my medical background and tell you all what my symptoms are and hopefully I can get some informed points of view regarding my condition, whatever it may be.

First off, my paternal aunt passed away from ALS about eight years ago. It was a very traumatic experience for our family, and we were all very stunned when she first showed symptoms because we weren't familiar at all with the disease and no one else in my father's side of the family had ever had it. My aunt was in her sixties and for her it started when she found she no longer had the strength to move the transmission (stick) in her car. Being completely ignorant of the disease, I stupidly thought that it was something spreading for her arm and that amputation could halt the spread of the disease. I quickly learned otherwise. She passed away after three years after losing her mobility and ability to speak.

Still, I did not worry that I could possibly get the disease, because I had looked it up and seen that only 5-10% of sufferers of this already rare illness had this disease due to some genetic issue in their family line.

Last December, I suffered from a herniated disc and that same month had a hypertensive crisis. After the hypertensive crisis, I've been on blood pressure medication and have been seeing a cardiologist every couple of months. I ended up getting a microdiscectomy because the herniation was pressing against the nerves in the cauda equina, which could have left me incontinent/permanently wheelchair-bound if not treated. Since I figured both of those situations were due to my being overweight, I've been on a strict diet and have lost about 55 pounds since December, and hope to lose at least 30 more. My cardiologist took blood tests and I had high levels of uric acid, cholesterol, and a whole host of other issues, but in my last blood test taken two weeks back, everything was normal except slightly elevated cholesterol levels, which I'm now working on.

This is all background information just in case my symptoms are being caused by something else other than motor neuron disease and I'm just too stupid to realize it.

Last January I had some discomfort in my right arm. My first thought was that it could be heart-related, or that I could have herniated my neck (since my recent health troubles were heart/spine-related). The discomfort was not exactly pain and is very difficult to describe. The arm seemed more difficult to manage than it usually is. Eventually I either got used to the problem or it went away, and I didn't give it much thought.

Last week, May 21st, I started having an issue with my right arm again. The fingers seemed clumsy and things I'd been able to do easily suddenly caused me trouble. My cell phone slipped from my fingers at least once a day. At the same time, my right leg started bothering me as well. The symptoms were similar. It seemed clumsier than usual, and I noticed it wasn't quite as strong as my left leg (I tried standing on just the right leg and found it impossible for more than a few seconds, tried standing on my toes with my left leg and immediately lost my balance).

Still, even with these symptoms, I did not consider a motor neuron disease, instead attributing my leg issues to recovery from my discectomy, even though this is the first time it's happened. I also noticed I was having trouble breathing deeply since three weeks ago, but attributed this to a pesky cold.

Then, both my left and right arms started getting an occasional achy feeling, like very light muscle spasms. I work at a desk job, and I've been intentionally avoiding any strenuous lifting because I don't want to re-injure my back, so this was very weird (I still feel it now).

The thing that has really scared me and has tied all of this together is fasciculations (I didn't even know what that word mean until yesterday). Yesterday morning, I woke up, and noticed that the muscles in my calves were twitching all over the place. Of course, I'd had the occasional muscle twitch (once even had an eye twitch) over the years, but this was non-stop, and almost unnoticeable if you weren't looking directly at it. Then I noticed that my both my calves were doing this! My feet were occasionally twitching as well. I looked up this twitching and found the term "benign fasciculation disorder." The article I found said that if you tense the muscles, the twitching should stop. I breathed a sigh of release and tensed my calf muscles, only to see the constant twitching did not stop.

The scarier thing for me is that since I never wear shorts, I have no clue how long these fasciculations have been going on without my noticing! I can't really feel them, and the movement is so slight (but constant) that unless you're looking directly at the calves, you won't notice them.

It's at that point that I remembered my aunt's initial symptoms and started considering that my situation might be ALS.

So, to recap, my symptoms right now are:
1. Constant, nonstop fasciculations in both calves and right foot
2. Occasional, very slight aches (I wouldn't even call them pain) in both biceps and forearms
3. Clumsiness in right hand
4. Weakness in right leg when compared to left
5. Difficulty breathing deeply (not sure if this is connected to anything else or really is just a cold)

I did go to a neurologist this morning, and mentioned my family history and symptoms, but he seemed to attribute the fasciculations to my recent weight loss. I googled this and found no relation between fasciculations and weight loss, and it also does nothing to explain any of my other symptoms. I have no medical training, though. He also did a blood test on me, and the results were:

Creatine Phosphokinase (CK): 94 (Normal is 50-230) U/l
CRP Protein (CRP): 0.23 (Normal is 0.00-0.045) mg/dl

He said that based on those results, he says he's inclined to think it's not ALS, but he didn't rule out the possibility. He gave me a prescription for something called Ternelin (1 mg). The generic name for it is Tizanidine. He says if it's effective, it lowers the chances of my having ALS even further, but that even if it's not, it does not mean that I have ALS.

As I look back at my posting, I realize I've gone overboard with detail, but I just didn't want to miss anything. What do all of you think? Am I worried over nothing? Should I request an EMG (it would have to be done at a different hospital, and the neurologist said he would only order one as a last resort)?
 
Given your spinal surg hx, I would request a cervical/lumbar MRI unless you've had one recently, and run bloods for B vitamins and electrolytes. I'd also pay more attention to nutrition and hydration -- go heavy on citrus juices for a few days and see what transpires. And I'd get a massage. But your hx doesn't scream ALS.
1mg of tizanidine is not a screen for MND or anything else. Nor is a CK.
 
Thank you very much for the reply! I had a lumbar MRI done in April as a follow-up to my surgery and it showed no abnormalities other than the usual swelling.

The neurologist claimed that if the CK was elevated it could be indicative of muscle damage which could be indicative of ALS. This is a general neurologist, not a specialist, but he was the one who was available at my local hospital. Is the CRP indicative of anything, or is it another waste of time?

I will try your advice regarding citrus juices (I'm already taking daily multivitamins), but I was told by my spinal surgeon not to get massages of any kind. I have another appointment with the neurologist next Tuesday and I will ask him to run a blood test for B vitamins and electrolytes as well.

I should have mentioned that since I'm losing weight, my cardiologist is being very careful regarding my physical condition and always checks my blood for signs of anemia or anything else that might be off-kilter, and the last blood test, only three weeks back, was perfectly fine other than the elevated cholesterol.

The thing that worries me the most is these fasciculations and the clumsiness in my right hand. I have no idea how long I've had the fasciculations (I don't look closely at my calves most of the time), and since my aunt suffered from ALS, I am worried.
 
I would request an emg/nvc since you are seeing a neuro. And go from there. Take care.
 
ALS affects very few people,about 30K a yr. in the US.It is so horrid a disease that it gets a lot of attention. Your odds of having it are smaller than being struck by lightning. It takes a lot even to diagnose it. I would not worry.
 
Thank you, all. I'm going to request an EMG.

I hope I'm simply being paranoid due to my two recent health scares (I've never had any health problems until last year when I got the herniated disc and had to have surgery, and the hypertensive crisis scare), combined with my aunt having had the disease.

The information available online is confusing. Some sites say that fasciculations are an early sign, while others say that fasciculations only occur after noticeable weakness.
 
The fasciculation in my calves has gotten worse these past couple of days. The twitching is just nonstop and I can feel it whenever it brushes against the fabric of my pants, it's driving me crazy!
 
Is there any way to distinguish between perceived and real weakness? I notice that moving my arm right arm seems to be more dificult/awkward than before, but I have no idea how much of this is just my paranoia.

Are there any simple tests I can do at home to check arm strength so I can confirm whether or not this is the case? All my neurologist had me do was squeeze his fingers with both hands at the same time.
 
Hi JEB,

I am sorry you are going through all of this. I am in no way qualified in medical terms, but I was very worried as you are for what seem to me like a very long time. I know how it feels and it sucks, big time.

First of all, I wouldn't advise you to test yourself for weakness. All you would achieve with that is muscle soreness (from over-checking them). You said your neurologist tested you for strength - that would be more than enough for him to notice a big change in your grip strength. Unless you are unable to do most basic things with your hands or legs, there is no need to worry too much about ALS.

Secondly, I too had awkward feeling in my arm (kinda felt like it wasn't a part of me, but still functional) for a couple of weeks and it's all normal now. Just my 2 cents.

Regarding fasciculations as a first sign of ALS, the general opinion is that very small percentage of ALS patients reported this as a first symptom. Even in those cases, it could've been something else in play (stress, benign fasciculations syndrome etc). I have fasciculations for last 4 months, body-wide plus hotspots. Still no weakness! And my EMG isn't even totally clear...
 
As I understand it, body-wide fasciculations are less likely to be a motor neuron disorder? My twitching is in my calves and right foot only.

What you say is a bit reassuring. My right arm feels clumsy and weaker than my left, but I'm able to button shirts and such, though I've dropped my cell phone while holding it a handful of times.
 
There are no rules, as far as I know. In my previous post I said I have hot-spots - those are areas I most often twitch in. I had hotspots on the sides of my feet for like 2 months. I don't think I twitch there anymore at all and I have no issues with my feet whatsoever.

Currently, I still have body-wide twitches with a hotspot on my right hand (between thumb and index finger) and that's the hand which showed chronic denervation on EMG in December! Still fully functional, just like my feet.

I do have tremors in my hands, arms, legs and feet since December and have no idea what's causing them. But I don't believe tremors can be considered weakness in this case, since my strength is still the same.
 
The Tizanidine isn't doing anything about the fasciculations, I woke up at 4 this morning and they're just as bad as ever.

Fell down trying to get up from bed just now as well.
 
You need to tell the dr this when you go . You have something going on just gotta figure it out.
 
I'm hopeful it's not ALS, but there's definitely something wrong, hopefully something that's treatable.

I talked to my surgeon who operated on my back after my herniated disc, he said he's sure it's not ALS but offered to get me an appointment with a good neurologist he knows, so I'm going to take him up on it.
 
I had my neurologist's appointment yesterday. The muscle relaxant that he gave me didn't work at all, so he's put me on anticonvulsants and I have another appointment with him next week. I asked him about an EMG, and he said he wanted to leave that as a last resort, because it's a very painful test. I asked him about any other blood tests he could do, but he seemed to think no other blood tests were warranted right now.

He said he wanted to rule out other causes before trying to diagnose if it was a MND. He tested my reflexes and said they were all normal and that if I had a MND my reflexes would be exaggerated.

I've started on the anticonvulsants but they don seem to be doing anything for my fasciculations. The fasciculations are sometimes stronger/more visible, and sometimes barely there, but they don't stop. I've still hot that clumsy feeling of diminished strength in my right hand, and occasional muscle aches in both arms.

The weirdest thing my neuro said was that if I had a MND, there would be no cure for it, so I shouldn't try to rush the diagnosis...what the heck?
 
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