I can certainly relate to all of what you are saying. I don't have the Vestibular nor the Oscillopsia type of Ataxia, but do have Nystagmus, Weakness, Staggering, Fatigue and Tremors. My episodes have been spaced years apart. First one in 1982, followed by 2000, 2006, 2011, and 2013. It continues with episodes for a couple of years where I very slowly have an improvement in symptoms. I don't fully recover though, and each new episode leaves me with some deficits in function. At my last Movement Disorder Neuro appt. in Aug. 2011 my "Most Likely Diagnosis" was Demyelinating Disease "Least Likely" was Hereditary Episodic Ataxia. I recently tested negative to Celiac Disease which causes Gluten Ataxia. I had the most sensitive tests available. A recent Brain MRI ruled out MS. An EMG and Lumbar MRI showed Demyelination at L5. I go back to the same Neuro at University of Michigan in September. I wonder what he will be able to tell me. I feel just like you do about the diagnosis - wondering whether it is correct or just a guess. People don't understand what we have been through and how difficult is to have the uncertainty with no diagnosis for a serious problem that interferes with our lives.
Through the NAF literature I thought there was no genetic testing available for EA1-EA7. Maybe that is incorrect. I hope they do have testing available, however; I have heard it is very expensive, and sometimes doesn't provide any answers after spending thousands of dollars.
My doctors tell me I have rare diseases and unusual reactions to meds, etc. My PCP said I am an enigma. They don't know what to do with people like us. I have a handful of rare diseases that most physicians have never seen nor treated.
Good luck in finding the answer to your symptoms. If I find anything out at my next appointment I will let you know.
Hi miss cake We’ve been out of contact for awhile. I am sorry about your recent diagnosis. Feeling frustrated and alone is natural when there are so many roadblocks you have run into. It sounded like you have made progress in several areas. Being able to hike is fabulous. Is it the lack of diagnosis and worry about the future symptoms that frustrates you? I understand the disappointment you are feeling after the last false diagnosis. Even though we may not share all your symptoms, we are here to listen.
Thank you. I would love to hear how your next appointment goes. I’ve also been called an enigma, a puzzle, interesting, etc. At first it was great because doctors took an interest and wanted to figure out the puzzle. Now it sucks because they just try to pass you off to other doctors. Most anyway. My two I have now are great, just don’t have the answers.
Anyway. Let me know how it goes!
Nancy J said:
Hi Miss Cakes2,
I can certainly relate to all of what you are saying. I don’t have the Vestibular nor the Oscillopsia type of Ataxia, but do have Nystagmus, Weakness, Staggering, Fatigue and Tremors. My episodes have been spaced years apart. First one in 1982, followed by 2000, 2006, 2011, and 2013. It continues with episodes for a couple of years where I very slowly have an improvement in symptoms. I don’t fully recover though, and each new episode leaves me with some deficits in function. At my last Movement Disorder Neuro appt. in Aug. 2011 my “Most Likely Diagnosis” was Demyelinating Disease “Least Likely” was Hereditary Episodic Ataxia. I recently tested negative to Celiac Disease which causes Gluten Ataxia. I had the most sensitive tests available. A recent Brain MRI ruled out MS. An EMG and Lumbar MRI showed Demyelination at L5. I go back to the same Neuro at University of Michigan in September. I wonder what he will be able to tell me. I feel just like you do about the diagnosis - wondering whether it is correct or just a guess. People don’t understand what we have been through and how difficult is to have the uncertainty with no diagnosis for a serious problem that interferes with our lives.
Through the NAF literature I thought there was no genetic testing available for EA1-EA7. Maybe that is incorrect. I hope they do have testing available, however; I have heard it is very expensive, and sometimes doesn’t provide any answers after spending thousands of dollars.
My doctors tell me I have rare diseases and unusual reactions to meds, etc. My PCP said I am an enigma. They don’t know what to do with people like us. I have a handful of rare diseases that most physicians have never seen nor treated.
Good luck in finding the answer to your symptoms. If I find anything out at my next appointment I will let you know.
Thank you. I would love to hear how your next appointment goes. I've also been called an enigma, a puzzle, interesting, etc. At first it was great because doctors took an interest and wanted to figure out the puzzle. Now it sucks because they just try to pass you off to other doctors. Most anyway. My two I have now are great, just don't have the answers. Anyway. Let me know how it goes! :)
Nancy J said:
Hi Miss Cakes2,
I can certainly relate to all of what you are saying. I don't have the Vestibular nor the Oscillopsia type of Ataxia, but do have Nystagmus, Weakness, Staggering, Fatigue and Tremors. My episodes have been spaced years apart. First one in 1982, followed by 2000, 2006, 2011, and 2013. It continues with episodes for a couple of years where I very slowly have an improvement in symptoms. I don't fully recover though, and each new episode leaves me with some deficits in function. At my last Movement Disorder Neuro appt. in Aug. 2011 my "Most Likely Diagnosis" was Demyelinating Disease "Least Likely" was Hereditary Episodic Ataxia. I recently tested negative to Celiac Disease which causes Gluten Ataxia. I had the most sensitive tests available. A recent Brain MRI ruled out MS. An EMG and Lumbar MRI showed Demyelination at L5. I go back to the same Neuro at University of Michigan in September. I wonder what he will be able to tell me. I feel just like you do about the diagnosis - wondering whether it is correct or just a guess. People don't understand what we have been through and how difficult is to have the uncertainty with no diagnosis for a serious problem that interferes with our lives.
Through the NAF literature I thought there was no genetic testing available for EA1-EA7. Maybe that is incorrect. I hope they do have testing available, however; I have heard it is very expensive, and sometimes doesn't provide any answers after spending thousands of dollars.
My doctors tell me I have rare diseases and unusual reactions to meds, etc. My PCP said I am an enigma. They don't know what to do with people like us. I have a handful of rare diseases that most physicians have never seen nor treated.
Good luck in finding the answer to your symptoms. If I find anything out at my next appointment I will let you know.
Hello Miss.............you and I have wrote before and your situation is so like mind.. Except I think I am much older. I felt so bad about what you are dealing with. I would like to talk with you here and just support you if I can. I know that's about all we can do. I take nothing for my Ataxia but I am interested in talking with you about your med's if possible.
I suffer with pain in my feet due to neuropathy. I was diagnosed with Ataxia from an MRI given by my neurologist. My sister followed behind with the same diagnose and then my brother this last spring (2015) Unreal when we got the news. So now like many we live one day at a time.
I just now read your info on trying these drugs. Was happy they do work for you. As of today would you mind if I ask do you still use these or have you had any reaction with them yet? I pl
an to check with my doctor after I hear from you. Thanks Miss Cake for your info. I will be waiting your reply.
I think that what you lost is hope, both that you would get better and that you would help others. I find that I, too, lose hope when I have a setback or when something that I try very hard to do does not work out. I have had a couple of these things lately and it is pretty discouraging. I wish I had good advice about finding hope, but I don’t. You said you are reasonably happy now despite your limitations, and I guess it is important to focus on that now. I, also, am reasonably happy now, but I don’t want the limitations forever. That seems to be happening, though.
Vickie,
It has been a long time since I’ve used this site. I’m glad you wrote! I did stop taking the clonazepam a long time ago. The Diamox is what helped me the most, but it took two months before I stopped feeling sick from all of the changes. Your body just has to get used to it, but it was definitely worth the wait! I have been on it now for a few years. The down side is that I tried to go off of it to try a different medication since I was developing kidney stones - which can be a side effect. When I tried to go off of it the symptoms of vertigo, migraines, nausea, etc. were unbearable! I decided that a few stones is worth the quality of life I have with it.
The clonazepam also did work great for awhile. But, it does have bad side effects when taken long-term. I started having trouble using my hands, and would get very shaky with lots of muscles spasms. It turns out that those were from the clonazepam, and once i got off of it those symptoms stopped. I still use it as needed for vertigo.
I am also still taking gabapentin. That is one of my most helpful. It helps me with my nystagmus, the neuropathy, some of the migraines, etc. I couldn’t function without it and the Diamox.
I hope this information has helped you, and that you find something that will help you feel better. Good luck!Brenda :0)
No, MissCake you’re not alone. I’m having the same problems,too. Myhusband is supportive but is uncomfortable doing personal care. Thanks to his ins refusing.to pay for ongoing therapy’ my therapy stopped in Nov., 2016. I’ve gone downhill since then. Getting therapyrestarted is very hard. I intend to fight for it & wont take no for an answer this time. I’ll be praying for you. God loves you no matter what.
