Help, please--is this ALS?

[rc.worried]

It has taken me a long time to come and post on here, but I am confused and would appreciate any help you could give. Some time in 2012, I started experiencing more fatigue than usual. I have two children and a FT job that is pretty stressful and often I had trouble sleeping, so I chalked it up to that. At that point, the fatigue did not really interfere with my life. I was still able to exercise and do everything at a normal level, even though it left me feeling tired. In the fall, I had a major muscle cramp one night in a foot. It lasted for about 5 minutes, and my toes were pointing all different directions, and it was extremely painful. Early this year, my symptoms started getting worse. I started having muscle pains and spasms all over my body--but mostly in my lower legs and arms. I started to get out of breath easily and was no longer able to keep up with normal activities and definitely not exercise. In February, A doctor ran some blood work, including an ANA panel, CBC, etc. Everything came back normal. By April, I was feeling even worse. I started to notice that I felt shaky all the time and was starting to have twitches. The twitches were mostly in my upper arms and fingers, but sometimes I felt like something was crawling under my skin in other areas. Also, at work, I was having a lot of pain in the area where carpal tunnel syndrome occurs (after typing). The bottom of my feet constantly hurt when walking. Around this time, A PCP sent me for a chest x-ray to see about the shortness of breath, and it showed scar tissue, and it recommended a follow up. I saw a neurologist in the beginning of May, who did a neuro exam in his office, which he said was completely normal, but he wanted to check me for peripheral neuropathy. He sent me for blood work, including Lyme's disease and vitamin deficiencies, which came back normal. I had an appointment the next week with a doctor at Mayo, who said my neuro exam was normal but scheduled me for an EMG the next day. That was also normal. In June, I had more blood work done by an internist, which was also normal, except that my ANA was now a low positive. I saw a rheumatologist a couple of weeks ago, who sent me for more blood work. I don't have the results of that yet. Last week, I saw the first neurologist again. He said that my muscle strength and tone seemed "fine" but he noticed that my reflexes were more hyper than the first time and noticed the small twitches in my hands. I also told him that I had started dropping things frequently with my right hand, and that I feel shaky all the time. He did not ask me to do any more tests but said he wanted to see the results of the new blood work and had me fill out a form so he could request that. Walking me out, he just told me that he hoped I had something that was treatable. I feel like everything is breaking down: my fingers and toes hurt constantly, when I lift things, my arms ache, and when I walk, my legs get so fatigued. I feel shaky and twitch, particularly in my hands. Sometimes I have what feels like bone pain in my knees and back of my feet. It has been 6 months and many tests later, and I still don't know what is causing all of these problems. If any of you could share your thoughts with me, I would appreciate it.

 

[Tokahfang]

Please use paragraphs in the future. I had to copy your post out to notepad and stick arbitrary paragraph breaks in to read it.

We're not docs, and you have quite a handful of doctors to pick from. If you want pure conjecture, I'd guess you're looking at some combination of Chronic Fatigue Syndrome, Benign Fasciculation Cramp Syndrome, and perhaps Fibro. It doesn't sound like a motor neuron disease at all, but rather a disabling but not nerve damaging chronic condition. Be sure to ask for help controlling the symptoms and living your life, don't just go hunting for a name for it.

 

[rc.worried]

Thank you for your response. I apologize for not writing in paragraphs earlier.

I know you are not doctors, but I have so far been to several PCPs, an internist, two neurologists, and a rheumatologist (over 6 months) who have not been able to give me a "name" for what I'm experiencing and therefore, no treatment. I posted on here just to see if my symptoms sounded familiar to anyone, and I do appreciate any response that could help me to find a diagnosis (and hopefully treatment or help in controlling the symptoms).

I did forget to mention that I have lost about 10 pounds over six months (without trying). I am small to begin with, so that is pretty significant on me. It is hard to tell if the weight loss is muscle or fat or both.

Again, thanks for taking the time to respond to me. I will keep following up with the doctors and look in to what you mentioned.