I'm writing here in hope to get some answers. My dad was told that he may possible have als. He had just 1 visit to the doctor and the dr said that it is likely that my Dad has als. I thought it takes a while to get such diagnosis. All the tests are good. The only test which is not is conductivity in the left leg. Phosphocreatine kinase level is very high. My dad is limping, but there is no obvious weakness. Looks like he has atropny in one of the calf muscles. He started having twitching about 2 years ago. Some muscular spasm were painfull, but not anymore. Limping started this summer. But overall my dad feels fine. There is another doctors appt at the end of december...
I know that there are some other neuro diseases that may mimic als symptoms. My dad's job requires standing for most of the day. Could it be something simple that physical therapy or chiropractor would take care? We live in Western MAss- area with high risk of lyme disease..... I dont' want to think about als. From what I've read so far about als symptoms is that tripping, dropping things, but what are the very earliest symptoms?? I pray that he doesn't have als.....
The following user gives a hug of support to Irene93: sky1987 (04-01-2011)
I'm sorry to here that your family is going through all this. I have had 3 family members die from ALS and now my aunt is showing symptoms of this nasty, heart breaking disease. You are correct to say that there are many diseases that mimic ALS, and yes one is lymes disease, but the docter who told your dad that it looks to be ALS, should have or is in the process of ruling everything else out. See with this disease there is no one test to say yes it is ALS or no its not. The diagnoses is done by proccess of elimanation. When all test are complete such as MRI's and blood work also some pysch work along with the neoro work up its then they can say wether its ALS or not. It is not a qiuck process at all. MY aunt started her testing back in September with a neuro doc here in MI and then at the end of october she was sent for further testing in ILL at North Western University, she has to go back again on november 21 for more nerve condution testing and again in December for psch testing. After every test comes back normal, its then they will tell her yes it is in fact ALS. Ofcourse with our family history we already have our gut feeling. Some of the early signs in our family is the muscle twitches and dragging of the left foot it progresses to the right hand weakness and atrophy in the left calf area. Useally tripping and falling are soon following.
Remember that this is how it happens in our family so it doesn't mean if your dad has the same symptoms thats infact what he has. We know for a fact my dad has the gene, Its almost like you just sit and wait for the bomb to go off again. I will be thinking of you and your dad, please write and let me know how things are going. JEN
Thank you, Jen. I'm sorry to hear about your family members. I've read many posts. Everyone, who is unfortunate to have als or a relative with this nasty disease, is saying that it takes several visits to Dr and numerous tests to rule out als. My dad had just 1(!) appt. with neurologist. I think it's too soon to tell. My dad started limping in July. So far nothing changed.....
I know how hard the waiting for an ancwer is!!!! Its great that your dad has had no other changes since July. I will keep you posted on anything else we learn through my aunts testing. Please keep me up to par with your dad if you have a chance. I useally check the board out a couple times a day. Hang in there and stay strong. Write back with any other questions or concerns you may have. GOD BLESS, JEN
My dad started having ALS symptoms @ age 35. I only remember that he tripped playing tennis and doesn't know how he could've tripped like he did. He was always a very good athlete and very active. I just remember him losing control of muscles, then he went in for testing a few months later (spinal tap, etc.). Soon he had to use a cane, then a walker, then a wheelchair. Later he could barely use any muscles and had to have his food pureed and his throat suctioned.
Sending prayers for your dad.
My father passed in 2003 of ALS. We went through a HUGE process of testing before they diagnosed him. But... in the meantime my family and I did our research, and knew it was ALS. My dad requested his medical records and when I looked through them I noticed a huge elevation in his Kinase levels. (very abnormal) It took us about three doctors, many tests and about 9 months of hell before they diagnosed him with ALS. I agree that for your dad it may be too soon to just come out and say it is ALS. It is devistaing to hear "ALS." I hope your doc has more sense than that. More TESTS! demand it! there are numerous diseases out there that mimic ALS. Push the doctors, and see more than one. If is is ALS there is not much time. The average patient survives about 18 months, depending on the progression they can survive as long as 5 years. Rilutek is the FDA approved drug out right now for ALS, and for some people it works great. The sooner the RIGHT diagnoses the better. I only wish there was a better way to diagnose it. Maybe one day. Good luck....my thoughts and prayers are with you at this time. if there is anything I can do please contact me.
P.S. have the docs test for Guillain-Barre Syndrome.
My mother's ALS began probably back to the early 90s, when she complained of an excruciating pain in her shoulder/neck. The pain was so intense and she could get no relief. I believe she had her first signs in 1994 and she died in October 2000. At work, her right arm became completely paralyzed. Her symptoms came on more slowly than of the others who have posted. The next obvious sympton was that her left leg began dragging. My mother was barely ambulatory until about a couple of weeks before she died. By then, she had no use of her arms and could barely swallow and could not speak. The worst part of it all was that she was diagnosed only 3 months before she died.