i was diagnosed at 58 y/o and am 59 y/o now. i have cerebellar ataxia witch was caused by taking dilantin [ a anti- seizure medication] . i was taking dilantin for 54 years and finally decided to show up. didnt really think about at first until 2 years laters . am going to a neuorolist where she did a brain MRI to diagnose it. im retired. its hard to find info on this type of condition. id love to find someone who took dilantin at one time and see what they are experiancing . my e-mail is ■■■■■■■■■■■■■■■■■■■■■■.
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I was 49 yrs old then & 58 now. I worked at our church and they thought I was drunk and tried to help me.
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I was diagnosed @ 47 I am 49
My daughter 20
My brother 46
My brothers son : 28
My father 75 (expired)
Fathers Sister 36 (Expired)
Fathers Brother 41 (Expired)
Father Sister Son 35 (Expired)
Father Sister son 38
Diagnosed at 46, but showed symptoms around 2005.
I was officially diagnosed lat year, but to be honest i had problem at the age of 20 but was misdiagnosed with another condition that was incurable so i take my pat on the back and the sorrys from the neurologist there was nothing they could do.
Then at the age of 45 i decided to go back as things didn’t seem right my foot dropped my speech became weaker and my balance was way of, so after testing and a new mri it showed i had a chiari?? and a shrunken cerebellum i got an diagnosis of chiari??, a left hemiplegia and CA cause unknown. If there is similar out there i would love to hear from you.
I was diagnosed at about 77 or 78 yrs of age and I am now 82. I use a wheelchair sometimes a walker and forearm crutches I cannot seem to get or find any treatment for any symptoms, I tried to get L-Dopa but was refused as my neurologist said it was for people with parkinsons. The only treatments I received were with Lyrica, Ambien and Klonopin. I think I may have been too demanding and pushing for a diagnosis as I was refused to be seen for eye problem, night sweats, and botox for spasms in the neck and face. I have been with this HMO for about 40 yrs and they cant be forced by lawyers because you sign and agreement. The only treatment I think was good was neck cancer in 2005 and emergency room treatments. The neck cancer was pushed aside for over 2 yrs and only treated because I was having some pain, and I really had no pain but I had to lie to force treatment. In 40 yrs the only pain treatments I received that worked was the liquid med of codein and aspirin or some ingredients like that. Jerry
I was 44 and working as a firefighter when I was diagnosed with sca3 . I am now 48 and it is starting to get worse. I don’t need a walker or wheelchair yet but my brother does and he is 55. This disease needs more media attention so they test more drugs.
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Diagnosed in 2007 age 46 with Friedreich’s Ataxia.
I was diagnosed in 2003 after a CVA (cerebrovasculair accident) at te age of 48 y.o. I’m 62 now. My ataxia seems te progress seriously last two years.
Mine started at age 58 when I had fourth ventricle Brain surgery. Now I am 64.
Was first diagnosed in 2014, so age 51. I didn’t know about it until my 2nd MRI in 2016 though so I just started seeing movement specialist.
I have the exact same situation. I don’t know how long I took Dilantin for-maybe 30 some years before the FDA got their act together and found out what it did. I now have CA severe. I am seeing PT, don’t need wheelchair (hopefully never will) but my walking and balance are really bad. Plus, tremor.
I’ve had that happen to me too-people thinking I’m drunk-people don’t understand and they’re not kind. Very judgmental.I’m sorry you went through that.
I developed symptoms just after 6th grade, was told it was all in my head by doctors, and was sent to psychologists who said that I was a troubled teenager who hated herself and was seeking attention.
I got diagnosed between 2011 and 2013, this condition affects my memory and things get blurred together. I am currently 63. I have two sons and my eldest has this condition but we do not have the money to have him go to the doctors for medication but found companies that do not require a prescription for (Diamox) the acetazolamide that he medicates with. When I got diagnosed, we knew that was what he had by the symptoms and I knew it was not all in his head. He is now migraine free, after daily headaches for 15 years and migraines 3 to 5 times a week.
JoAnna
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Joanna, how horrible! I am so sorry you went through that. Wishing you love and light…
I was diagnosed with at first Friedreich’s Ataxia at age 39. I underwent extensive DNA testing for it and other SCA’s all to find nothing. In 2012 I was diagnosed with MSA, MRI’s firmed this up. Many ataxias are quickly confirmed with DNA testing, however, there are many undiscovered. Almost all have some disruption/atrophy of the cerebellum or spinal column.
Many SCA’s/MSA/Friedreich’s have similar symptoms, although, each individual is different.
Some types are aggressive and some are mild. A lot of ataxias progress slower at younger ages.
While others seem to move right along.
Either way, and regardless of your situation, this condition is not an easy one to deal with. The prognosis is grim, scientist’s have (yet) to find a cure.
I’m not sure if anyone posted it on this thread, but a good website to look at www.ninds.nih.gov/
Best of luck! and may a cure be found soon!
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Hutchy, did your extensive DNA testing involve spinal tap or can they do this with just blood tests? thanks. Best of luck to you.
My DNA was just a simple blood test (thank goodness) It was the neurologists first line of testing. I visited with 3 different neurologists before finding one that truly specialized in movement disorders. She’s at Toronto Western Hospital in the Movement Disorders Clinic.
I’m 43 now, but was diagnosed back in 1997 (when I was 23). I have the recessive genetic form, so I’ve been showing symptoms all my life, but things became more noticeable as I got older and my brain finished developing. My older sister had been misdiagnosed with MS, but an astute doctor didn’t think the diagnosis was quite right. Once her ataxia was properly diagnosed, it seemed like a fitting description of me. And then, WHAMMO BAMMO, an MRI brought the culprit to light.
My son is 4.5. The last 3 years his been have no tests, for ataxia, nystagmus amongst other things. His very wobbly and falls.
We have just found out his brain scan shows cerebellar atrophy and my heart is broken.
The plan is now to do some mitochondrial DNA gene panel tests, and a muscle biopsy. He is already enrolled on the 100k genome study. His had chromosomes and ataxia panel which were normal. They will repeat his MRI next year to see if sent further changes and if it’s static or progressive.