I joined this site a few months ago, but have never actually posted anything. I'm not really sure how to go about this, but here goes...my husband (Charley) was diagnosed with ALS on 12/7/08. He has been going down hill quite rapidly since his diagnosis. His neurologist confirmed on Tuesday, April 28th that it appears that he has an aggressive form of ALS. He questioned Charley about a persistent cough or tickle in his throat. Has anyone on this site experienced this symptom? Is it an ALS symptom? We have noticed this weekend that he does have a little cough and what he describes as a tickle in his throat. We feel this could be a result of a recent upper respiratory infection...but we did not notice this until this weekend. Someone please get back to me on this symptom. I've been looking on the internet but there is just too much to sift through. Thanks so much for your help!
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I have a question about ALS symptoms?
- By CMAC143
- Posted May 3, 2009 at 11:17 pm · 11 replies
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- By lkingsbury
- Posted May 4, 2009 at 7:45 am
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CMAC, tell your doctor you want a referral to a respiratory therapist and a swallowing analysis done. This will tell you if he is starting to have issues with swallowing and his respiratory system. My husband was diagnosed in July of 07 and we he has just started having these symptoms as well.
- By greensmile
- Posted May 4, 2009 at 11:18 am
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this tickling and coughing may be a result of aspirating liquids,and or solids into his airways.definitely have a swallow study and line up an appointment with an a.l.s. smart respiratory therapist or a pulmonologist.best of luck,keep the faith,never ever give up hope,and keep smiling :)
hugs
- By lkingsbury
- Posted May 4, 2009 at 3:30 pm
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CMAC, if you haven't done so yet, call the MDA and ask them where the closest MDA-ALS clinic is. Then call your Neurologist and have them give you a referral. The ALS clinic will set you up with a social worker, occupational therapy, speech therapy, and anything else you might need. It is a WONDERFUL resource. We had a clinic in our local hospital and didn't even know it. We walked out of that appointment feeling so releived because FINALLY, someone understood. God Bless and feel free to email me anytime at l.kingsbury@roadrunner.com.
- By CharlesHaleSrWife
- Posted June 16, 2009 at 1:56 pm
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Hi my Husband had A.L.S. and one of the first clues were on his tongue. His Doctor asked him to stick out his tongue and then showing me on both sides of his tongue what looked like tiny worms on each side of his tongue. That was a very clear sign that Lou Gehrig's Disease was indeed what he had. I have a book out that talk's about our experience. My Husband lived only 19 months with this devils disease. I am praying that through my book and people standing together we can fight for better treatment and even a cure. We have a voice and it's time we use it for those battling A.L.S. My Husband never had a tickle in his throat kathy hale
- By bamabryan
- Posted July 1, 2009 at 12:05 pm
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I am very sorry for your loss. Can you tell me what the "tiny worms" on the sides of his tongue looked like? I have been expereincing some odd things like arm weakness, fatigue and I do have marks on the sides of my tongue, but I was told they are from keeping my tongue on the roof of my mouth during sleep. They are teeth marks, as my tongue fits perfectly inside my teeth when I out my tongue on the roof of my mouth. Thanks for your help!
- By greensmile
- Posted July 2, 2009 at 5:48 am
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those tiny "worms" are fasciculations,that means muscle fiber groups spasming-not the whole muscle.this can be seen in a.l.s. and sometimes in m.s.
- By joe
- Posted July 3, 2009 at 11:22 am
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CMAC lkingsbury suggestion is right on. I go to the Cleveland Clinic every 6 months and meet with a tearm of people. Physical, Speach, Dietary, Social worker, Ocuptional therpy as well as the doctor and his nurse. Each visit last about 4 hours. I have the same annoying cough. I first noticed it way before I was dx. with ALS in 95, when I would come home from a run I would start to cough. Certain times of the year it is worse. Seems like every June and maybe again in October it is bad. I take zyertek, and flonase (sp of both) it helps some. It is worse when I am tired.
Does your husband have breathing test done? FAC I think, mine is 70%. My ALS was not confirmed until 01' in Cleveland.
Do you know of any support groups in your area. If you are not sure go to the National ALS Web page and they will find you one. Support groups are so very helpful. They can supply equipment as well as the MDA, and look for any church group, in your area that may have equipment. I have walkers and a wheel chair that are on loan from the ALS/MDA in Pittsburgh
We live one day at a time and cherish each day we have together. NEVER GIVE UP THE FIGHT. Joe
- By CharlesHaleSrWife
- Posted July 19, 2009 at 4:38 pm
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When Charles my husband was diagnosed the Doctor found his first symptoms in his tongue I'm so sorry I know all to well what you both are going through and may GOD be with you now. I would say that yes that probaly is a symptom that he has dealing with ALS. Just stay strong and love with all your Heart's. Please we all need to scream to the world we need help so that not even one more should die with A.L.S. Hang in there we could always get that miracle. kathy hale
- By pall101
- Posted July 24, 2009 at 2:35 am
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My brother Mike died Sept 11 2003 from ALS. He had been diagnosed 6 years previous. His condition was finally diagnosed after 18 months of treatment for injuries from an auto accident. He sustained an injury to his right leg which would not heal. He underwent PT for months until his doctor told him of his suspicion.
He then went to a highly respected Hospital in DC where one of the kind physcians there bluntly confirmed his doctors diagnosis. He told him it was ALS and that he had 3 years or less to live.
This same doctor offered no further help.
I will never forget the phone call I received from Mike from his cellphone enroute back home to Maryland.
I was enraged by that prominent doctors attitude and lack of compassion. I immediately went online to check any research sites and suggested that he go to John Hopkins in Baltimore.
He didnt go there but instead several weeks went by and we found that GW University had opened an ALS clinic.
His wife had wonderful insurance at the time which paid for everything. He also received help and support from the local ALS Foundation in the Washington Metro Area. They were a Godsend.
I saw the destruction my brothers body was subjected too. He had always been quite an athelete . He had never had any major illness.
4 months before his death our mother died (not from ALS). At her funeral were 30 first cousins ranging in age from 35 to 66 years they all came to me and spoke of his courage. There he sat in his wheelchair comforting them on the loss of their aunt and his mother.
Mike was 57 years old. He was a father, new grandfather, son, friend to many and my only sibling . We were only 10 1/2 months apart in age.
Just remember to care for yourself as you take care of your loved one. Make time for yourself. It isnt selfish its selfless.
Get out of the house and away from everyone and everything for a short time several days a week. I used to take a drive (20-30 minutes) with the radio blaring my favorite music. I did this usually in the evening while taking care of my mother. i had family help on hand who stayed with her while I was out . It helps you mentally and physically.
Keep in contact with family and friends and let them know how he/she is doing.
Encourage them to visit at least once a month. If they give you the old "I cant bear to see him/her that way" throw it right back on them .Tell them he/she "'cant bear not to see or talk with them." Isolation is pure poison.
Get them to fight for themselves. Yes fight for every muscle they can use. I knew all the buttons to push for my mother and brother and I used them. Did I feel bad at the time yes but it motivated them
Most of all enjoy evey moment and small victory you share with them.
Every night for the 8 years I took care of my mother she would tell me "I dont know what I would have done without you" I would tell her that I was glad I could and how I loved her. I made sure I did the same with my brother when I couldnt see him I phoned him.
Everyone today speaks of heros. We seem to be searching for that special person who personifies greatness. Yet everyday we live with or near a real hero. Turn around and grab the hand of your hero and loved one who is suffering. Squeeze it gently, you dont have to say a word, they know. Understand also in their eyes you are their hero.
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