@wittmack @speechless623
I never believed my ataxia episode to be progressive.
Looking back I wonder if I could be having a mild form of progressive Ataxia if there is a mild form. My walking is basically normal and I can walk in a relatively straight line now however I do we weave and fall quite often. I imagine people question my sobriety when they see me walking by. I always thought and probably still do believe my coordination problems are due to seizure medications and the number and severity of seizures I’ve had over the last half-century. I think I’ll ask my doctor if there’s any relationship to either my Ataxia, Neuropathy or Epilepsy provided I can remember.
Take care,
Jake
@speechless623 You have recently been diagnosed with Ataxia but you question why the symptoms are only on your right side.
You will see that I have moved your question into a discussion where members have previously discussed Ataxia so you could more quickly connect and get support. Members like @IndianaScott@rmftucker@rivergirl8243@jakedduck1@Erinmfs have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the comments to find previously shared suggestions.
May I ask what the process was like regarding receiving a diagnosis? What was the provider reasoning behind why only one side of your body experiences symptoms?
Thank you for your response. I have been sick for 3 years - looking for correct diagnosis. Mayo neurologist said my condition was a result of severe stress; I then saw Neurologist at USF who said I have Spinal-Cerebellar Ataxia and there is no cure. I am presently seeing 2 Neurologists in Gainesville who want me to do a Fluoroscopic Guided Lumbar Puncture (they did a "regular" Lumbar Puncture on me last month, but were unsuccessful in getting any spinal fluid). They need spinal fluid to run tests to determine cause of Ataxia. I've had Genetic Testing done that came back negative; I have had two (2) EMGs - both negative. GAD65 was positive (however, I have a family history of Diabetes, but I have never been diagnosed with Diabetes (If I had been diagnosed with Diabetes, that could explain positive GAD65 blood test result). I have not gotten an answer from doctors as to why do I only have Ataxia symptoms in the right side of my body? I think it is important I am correctly diagnosed. After I do the Fluoroscopic Guided Lumbar Puncture, my doctor wants me to do IVIG Therapy. Does anyone have information or first hand experience with IVIG Therapy please?
@speechless623
I always thought it was only limited to my left side however now you have me questioning that. When I had my acute attack it was definitely only one-sided Although I still think seizures, medication and possibly general weakness may be the cause or a contributing factor.
Take care,
Jake
Well I have ataxia got diagnosed a year ago. Over the last 5 years I thought I was clumsy I would fall out of no where or fall in the streets. Always starred up my knee got alot of bruises. It took me to get check out when family came over and I fall down the stairs and they told me I had to get checked out they are worried. And I got a MRI and my cerebellum is really small. When I got the news I cried for a bit knowing that my cerebellum and my balance wants coming back. Over the last 6 months I fell about 20 times like I don't know to walk anymore. Part of those 20 I fell down the stairs 5 times. Started speech therapy but I always had a speech problems sinece I was little so I felt like that wasn't going to help much. What I really like is physical therapy. I'm really sad there is no care. I was told I could end up in a wheelchair. I guess I'm asking for help how to deal with this.
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@wittmack
@speechless623
I never believed my ataxia episode to be progressive.
Looking back I wonder if I could be having a mild form of progressive Ataxia if there is a mild form. My walking is basically normal and I can walk in a relatively straight line now however I do we weave and fall quite often. I imagine people question my sobriety when they see me walking by. I always thought and probably still do believe my coordination problems are due to seizure medications and the number and severity of seizures I’ve had over the last half-century. I think I’ll ask my doctor if there’s any relationship to either my Ataxia, Neuropathy or Epilepsy provided I can remember.
Take care,
Jake
Jake -- Do you find that the Ataxia symptoms are on one or both sides of your body?
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1 ReactionThank you for your response. I have been sick for 3 years - looking for correct diagnosis. Mayo neurologist said my condition was a result of severe stress; I then saw Neurologist at USF who said I have Spinal-Cerebellar Ataxia and there is no cure. I am presently seeing 2 Neurologists in Gainesville who want me to do a Fluoroscopic Guided Lumbar Puncture (they did a "regular" Lumbar Puncture on me last month, but were unsuccessful in getting any spinal fluid). They need spinal fluid to run tests to determine cause of Ataxia. I've had Genetic Testing done that came back negative; I have had two (2) EMGs - both negative. GAD65 was positive (however, I have a family history of Diabetes, but I have never been diagnosed with Diabetes (If I had been diagnosed with Diabetes, that could explain positive GAD65 blood test result). I have not gotten an answer from doctors as to why do I only have Ataxia symptoms in the right side of my body? I think it is important I am correctly diagnosed. After I do the Fluoroscopic Guided Lumbar Puncture, my doctor wants me to do IVIG Therapy. Does anyone have information or first hand experience with IVIG Therapy please?
@speechless623
I always thought it was only limited to my left side however now you have me questioning that. When I had my acute attack it was definitely only one-sided Although I still think seizures, medication and possibly general weakness may be the cause or a contributing factor.
Take care,
Jake
Hello my name is Tia not sure if this is the right place but could I talk about ataxia or is there a different group?
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2 ReactionsSince ataxia is associated with the nervous system this is a good place to start. What do you want to talk about?
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2 ReactionsWell I have ataxia got diagnosed a year ago. Over the last 5 years I thought I was clumsy I would fall out of no where or fall in the streets. Always starred up my knee got alot of bruises. It took me to get check out when family came over and I fall down the stairs and they told me I had to get checked out they are worried. And I got a MRI and my cerebellum is really small. When I got the news I cried for a bit knowing that my cerebellum and my balance wants coming back. Over the last 6 months I fell about 20 times like I don't know to walk anymore. Part of those 20 I fell down the stairs 5 times. Started speech therapy but I always had a speech problems sinece I was little so I felt like that wasn't going to help much. What I really like is physical therapy. I'm really sad there is no care. I was told I could end up in a wheelchair. I guess I'm asking for help how to deal with this.
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Helpful -
Hug
2 ReactionsPlease check for SS
What's SS?
Superficial siderosis