- Nov 6, 2014
- Madison County
Good Morning: My husband, who is a US Vet, was experiencing what we thought was a bulging disc, that also entailed numbness and pain in his feet and legs. Then the muscle spasms in the middle of the night that made him scream became an every night occurrance. He also was experiencing crushing pain in his left thumb, forearm and his left shoulder for no reason. He then was number on half of his body and we took him to the ER. The doc there examined him and noticed over-reactive reflexes but didn't say anything to us at the time. The orthopedic surgeon said there is nothing wrong with his back and sent him to a neurologists the next day. The neurologist had no bedside manner and examined him and gave him Advil for his pain and sent him on his way. He said there was nothing wrong with him, neurologically. We went from neurologist to neurologist that specialized in certain areas--one for MS, who said no lesions on his brain, so no MS. Went to a Parkinson's specialist...no tremor, so no PD. Not lyme disease, fibromyalgia, metal toxicity, or Lupus, according to a rheumatologist. Because of the many visits to neurologists who find "nothing wrong with him", we are able to get in to any other neurologists right now because of what they read in his medical records. In the last two months, my husband's pain has been waning and now his left arm is smaller than his right, as well as his left leg compared to his right. He now is very weak in those limbs and feels absolutely horrible all the time and has extreme fatigue. This is a man who used to power through anything and had tremendous strength and has done a lot of hard labor in his life. I think the doctor expected really bad weakness recently, but he's weak for how HE used to be....now he probably has the strength of an older woman, so I think he wasn't deemed "weak enough". Now he can't even work at his desk job he's held the past five years (which I made him get because I thought he was experiencing back troubles). His appetite is gone and he lives in his carrharts in the house because he's freezing all the time. Walking up the stairs to our bedroom is a chore and has to stop get his strength to continue. He is taking many of the medications already that PALS take, such as anti-tremor, pain meds, a muscle relaxer so he doesn't have leg spasms and pain that goes with it. He also has had fasciculations in his legs, arms, back for about a year, and now just in the past month in his stomach and chest . His sleeping has become eerily quiet. I can hear him breathing just fine, but it's just not snoring like I've been subjected to for almost 24 years. He has thickened mucus and his manual dexterity is getting worse. Most of the symptoms you are reading have been going on only since January of this year...so, only eleven months, now. ****We seem to NEVER read or find on this forum much about Limb Onset as much as I do bulbar onset. Can ANYONE please share their experience/story regarding LIMB ONSET to Bulbar symptoms, and how long did it take to move along to it? I know all stories are different, but it would be nice to gauge it. He doesn't have drop foot (yet), although walking and standing up is very stiff and laborious. I never thought we'd ever experience this type of delay in getting a diagnosis from someone, but he's going downhill fast, and we just want answers. Can anyone recommend a doctor in Iowa who specializes in the TRUE symptoms of Limb Onset ALS? I believe many doctors have a misguided notion that severe pain in limbs is a major symptom with ALS and they don't recognize it. I am so very sorry this is so long. Had to get it all out in one fell swoop and see what any of you can do to help guide us, or if you, too, had a bad experience getting a diagnosis for Limb Onset because it didn't include the mouth and foot drop up front. Thanks, again.