Hi there! My mom was diagnosed at 49 after many years of misdiagnosis. She is now 72, in hospital, had a feeding tube put in and her speech is hardly understandable. Her cognition is now at a point that it is hard to tell how much she understands. Sometimes she is saying a phrase like “very good” and stops at “very”. Today I took a photo of her with my phone and she kept saying another name and didn’t recognize it was her. Would love to hear from anyone else who may have experience with this. We are waiting for her nursing home to be ready for her to come home but she is the first resident with a feeding tube allowed to stay in the home. It took me lots of advocating for that to happen but after 13 yearsof care…her vitals and blood work are excellent. Not sure what to expect next. She can still sit in her wheelchair and smiles with recognition. Any feedback is welcome!
I thought I was at the late stage CA with violent tremors,nomobility,very poor speech and double vision.No tubes,pain ,fatigue,swallowintg prob s or cognitive probs.Only 55now.Diagnosed at 47.Not optimistic.
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Hi Lori, I am 67.I feel for your mom Like your mom,my voice is getting worse.It's getting so that I don't want to talk on the phone.Lately all I want to do is sleep.Is your mom doing this? Is she in pain? I get very bad pain in my upper leg. Oxycontin doesn't help unless I take two,I don't want to go that path.I am going to try pain patches and see if they help.I'm sorry I'm not much help but someone will be able to from this site.Take care and stay safe
It would be nice if the doctors were able to diagnose to start with. I am losing faith in all doctors, who can you trust to know what they are doing. Just too much incompitence.
bloodaxe said:
Sorry I can`t be much help. I wasn`t diagnosed properly `til Sept 2014, althogh I knew from research I did myself (I was tested just over a year prior to that, but the useless neurologist I saw never actually gave me a diagnosis!) Speech has become steadily worse since about May 2013, to the point where I can barely talk now (and only barely legibly, for a few miutes). I was close to losing my mobility at about Christmas (I guess due to muscle atrophy, from lack of use) A pretty intensive workout programme has saved my mobility (or perhaps just prolonged it!) It is becoming worse (quite rapidly) so it looks fairly bleak. There seems to be a lack of information out there, and trying to get anything from Drs (even specialsts) is like trying to extract blood from a stone! I hope someone finds a cure soon
Not all doctors are incompetent. Ataxia is by itself a symptom not a diagnosis. There are 18 hereditary types and an unknown amount of idiopathic causes. Ataxia is incurable, progresses at whatever rate it wants to, and gives you whatever symptoms it wants. Doctors can treat some of the symptoms but not the disease.
I have found exercise helps and sometimes a gluten free diet.
gelu65 said:
It would be nice if the doctors were able to diagnose to start with. I am losing faith in all doctors, who can you trust to know what they are doing. Just too much incompitence.
bloodaxe said:Sorry I can`t be much help. I wasn`t diagnosed properly `til Sept 2014, althogh I knew from research I did myself (I was tested just over a year prior to that, but the useless neurologist I saw never actually gave me a diagnosis!) Speech has become steadily worse since about May 2013, to the point where I can barely talk now (and only barely legibly, for a few miutes). I was close to losing my mobility at about Christmas (I guess due to muscle atrophy, from lack of use) A pretty intensive workout programme has saved my mobility (or perhaps just prolonged it!) It is becoming worse (quite rapidly) so it looks fairly bleak. There seems to be a lack of information out there, and trying to get anything from Drs (even specialsts) is like trying to extract blood from a stone! I hope someone finds a cure soon
dont know about your doctors but I have been having problems for about 5 yrs and they have not tried to treat 1 symptom yet except try me on lyrica, ambien and klonopin no types of drugs for any syptoms of ataxia.
Scalp acupuncture has helped me
Made me more relaxed and less stressed both mentally and physically.....leg and calf cramps
No change in balance though :-(
10 sessions 8 needles in scalp
Check out Synopsis of Scalp Acupuncture
Dr Zhu's Acupuncture Medical & Neurology Center, in San Jose, California
I don't know whether he is alive?
I am in Australia so no access
gelu65 said:
dont know about your doctors but I have been having problems for about 5 yrs and they have not tried to treat 1 symptom yet except try me on lyrica, ambien and klonopin no types of drugs for any syptoms of ataxia.
It seems that lyrica may actually have been the cause of my ataxia.
How did you reach that possible conclusion?-----Silky
Melanie Gratton said:
It seems that lyrica may actually have been the cause of my ataxia.
Lyrica is a funny drug and very dangerous it has been tied to suicides and when I took it I felt like crying all the time and quit, I dont need any sleep that bad.
Silkybill said:
How did you reach that possible conclusion?-----Silky
Melanie Gratton said:It seems that lyrica may actually have been the cause of my ataxia.
I was put on lyrica and almost immediately my symptoms began: seizures, difficulty speaking, difficulty walking. Even after being withdrawn from lyrica (which was very difficult) the symptoms remained.