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Active member
Jun 6, 2006
Learn about ALS
I have been reading the threads for a little while now. I'm not really sure how to begin. My husband might have a motor neuron disease. He has been having symptoms for about 10 months probably even longer. It started with hand cramps in both hands more on the left. Everything is really worse on the left side. He drops things all the time. He has a lot of fatigue and weakness. He also has muscle wasting in the hands and arms. He has muscle twitching and muscle cramps all over the body. His new neurologist has him on Quinine. It is helping. During a two week period he had trouble swallowing food like chicken nuggets and had to cut them into small pieces. I noticed he was having a lot of saliva when he was talking and slurring for a couple of days. But now he seems fine in those areas. In the beginning is that what happens? Or was the saliva etc. just a coincidence? He has had 3 EMGs. The first two showed some problems but nothing of real concern. The third by a different doctor showed abnormal activity most likely anterior horn disease. MRIs came back ok. He recently had a Cat scan and more blood work. He also just had the Kennedy Disease DNA done so we have to wait for the results for them. He won't see the neurologist again until about 4-6 weeks to give the doctor enough time to get the Kennedy test back. My husband is 39 years old and has always worked physical jobs. He is finding it very difficult to make it through the day at work. Thank you for listening and any information you can give me would be of great help. Take care. Sunshine
Hi Sunshine. It's hard to define what is normal with a motor neuron disease. While some of your husband's symptoms sound like ALS they might also be something else. Sometimes the only thing you can do is wait and see if things get worse and then go back for more tests. A diagnosis of most MND's is a series of exclusions. Ok you don't have this so maybe it's this. Even then it is difficult to get a quick diagnosis. Most of us take 2,3 or 4 times to get a diagnosis and even then they sometimes say it's probably ALS but we're not 100% sure. It is hard not knowing but try not to get too caught up in the doom and gloom surrounding MND. It could be something else. Hopefully it is.
Hi Al. Thanks for your reply. From everything that I have been reading, I realize it is basically a waiting game. We are living are lives as we normally do but it is always in the back of our minds. I pray that it is something other than ALS/MND. And I hope if it is MND that we have the courage that you and the other members do. Take care, Sunshine
Hello Sunshine,
Just wanted to say,, hang in there and to let ya know that i have ALS and my symptoms have did that too. Sometimes they are worse than others,, so i use to think maybe they made a mistake. But then it comes back with a vengance. Don't mean to scare ya,, but i believe in being honest. Heres hoping for the best,, for ya. Take care and come talk with us again anytime.
Love and Prayers
Hi Marlo. Thank you for your reply. I want to be informed as much as possible. Even if it is not what I really want to hear. I feel the more I know the better I can help my husband. This weekend he has been running a 102.7 fever, rash, vomiting, headache, and dizziness. I don't know if it is just a virus or an allergic reaction to the Quinine he is taking for his muscle cramps. He has been taking it for 12 days. The neurologist on call said for him to stop taking it for now and to call his family doctor tomorrow. If it gets worse to take him to the emergency room. Since he has been taking it for 12 days, I thought he would have had a reaction in the first days. I am hoping it is just a virus because the Quinine was helping him some with the muscle cramps. Thanks again and take care. Sunshine
Hello Sunshine,
Sorry to hear your husband is going thru some hard days. It most likely is a virus or something. However, i did work with a woman that was taking some kind of medicine that acted like that with her body. The doctors didn't think she was having a reaction to the drug , cause she had been on it for several days. I guess her body just said " enough" cause she swelled all up and had trouble breathing at work , so they had to call the ambulance. She was fine once she got off the drug. Hopfully it is not the quinine. Let us know ok?

Love and Prayers
I looked up Quinine reactions and while uncommon what you are describing was listed. Guess it's off to the doctor. Some other drugs can be prescribed for cramps. Take care Sunshine.
Marlo and Al,

We went to his family doctor this morning. He said it was definitely the Quinine. He said most people are not allergic to it. The people who are allergic to it usually have the symptoms my husband has. My husband seldom drinks but he also said for him to stay away from tonic water. It has some quinine in it. The doctor said it will take a couple of days to get out of his system. He gave him a prescription for Zyrtec to help with the rash. He can also take Benadryl but that would make him sleepy. He can go back to work Wednesday. We now have to wait for the neurologist to prescribe something else for the muscle cramps. Well, one good thing, our family doesn't have to worry about getting a virus from him! Take care. Sunshine
The good thing with Quinine is you don't get Malaria. So stay out of the tropics. Or wear bug spray. Hope you don't mind my attempt at levity here. You do need a sense of humor with this disease.
Ha! Yes, your right. I forgot about that. I do get a laugh from some of your replies and we all can use a good laugh. Thanks. Sunshine
Hi Sunshine

Hi there, Hope it's not ALS with your husband but symptoms seem it is. Where are you from? All the tests I've seen done on people on the forum I haven't read that anyone had a spinal tap. When Jack was in the hospital (My-son-in-law) the doctors had done all kinds of tests but, the spinal tap eliminated any other disease and was the final prognosis. How's your husband's walking? We take one day at a time and pray for a miracle. Hang in there. My Best to you, Beebe :)
Hi Beebe I've been the spinal tap route. The first guy stuck 4 needles in me and still didn't get fluid but he gave me a spinal leak. What a headache for a week. Migraine city. I had never had one and couldn't believe how bad they are. Next attempt was done under xray and was a piece of cake. Unfortunately it showed that I didn't have anything else that might be mimicing ALS. So back to the drawing board.

Hi! I live in Claymont, Delaware. My husband walks ok. But at times he walks stiffly and slowly. He said his legs and arms feel weak. He gets fatigued a lot too. The doctor hasn't mentioned a spinal tap yet. If he needs one, I know it will creep him out. All we really can do is pray and hope for the best. If it turns out to be ALS/MND, we will pray for God to help us get through it. Take care.

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