My journey started when during a routine physical, the nurse practitioner noticed my voice was raspy. This led to having various lab tests and a MRI. All the lab tests were negative, but the MRI was positive and showed cerebellar atrophy.
It took a few days for reality to set in. How could I go from being relatively healthy to this?! Eventually I came to accept that atrophy doesn’t get better and so I was determined not to let this get the best of me.
I have speech, voice and swallowing issues as well as not always feeling stable on my feet. I do physical exercises as well as speech exercises and have noticed they help a lot. I am retired and can devote time to therapies that help with any new symptoms. At this point, I view this as a challenge.
I found this site while I was searching the internet for anything that might help with my latest issue (leg cramps at night). For the leg cramps I’ve tried everything. Nothing seems to work 100% (I still have the occasional cramp) and when it does help, it doesn’t help for long.
That’s my story…I look forward to interacting, learning and supporting with anyone on this site!
I found this site to be very informative and the people on here to be very helpful. Did you try taking Magnesium roll on for your leg cramps? My wife has found it to be very helpful.
Hi Maddie, welcome I replied to you earlier today…I don’t know why it isn’t visible. I could see you’d had problems accessing the group..and today was the first time you were visible to me.
Isn’t it surprising what can lead to investigation ..Generally an issue with balance is the first thing that leads to a referral.
Sometimes..symptoms can appear ‘almost overnight’ …other times they accumulate gradually over a number of years before worsening.
You’re experiencing common symptoms after a diagnosis of Cerebellar Ataxia….and if you can continue to exercise it will be of benefit. Look out for Vestibular Therapy.
This link gives general information about ataxia inc genetic testing..the Fact Sheets are very useful.
Bear in mind this is general information, not everybody experiences all symptoms mentioned or progress in the same way.
Thank you for both notes. I was waiting for things to calm down here so that I could write a better massage.
Looking back, I realize that some of the issues I’ve had throughout my adult life were probably symptoms of ataxia that (at the time) I chalked up to other reasons.
I’ve done some testing for the most common genes but all were negative. I opted not to continue testing since (at this time) there is no cure) (putting my head in the sand??). I’m not ready to be on medications…preferring to tackle symptoms with physical exercise and speech therapy. So, not knowing which particular gene isn’t important right now. My kids know to be on the lookout for symptoms.
I very much appreciate your statement, “but be aware not everybody experiences all symptoms mentioned, or progresses in the same way.” For now, I see this as a challenge (one of which I’m not happy about but, oh well).
Not much I could add except to drink a lot of water even if you are not thirsty. Cramps are your body saying gimme a break. Salt is also lacking but that’s something to talk to a doctor about.
I can well understand your reasons for not continuing to have testing.
I’ve had exhaustive testing myself without a link being found..my diagnosis is still Idiopathic Cerebellar Ataxia. Some of my symptoms can be traced back decades..and I’ve been told that this could indicate a genetic link…but there are many types of ataxia not yet at the point of ‘patient testing’..and I’ll always be wondering. If your Neurologist is satisfied your diagnosis is basically Late Onset Cerebellar Ataxia ..it does give a certain peace of mind, in that it isn’t genetic.
Hi Maddie,
Sorry or delay. Yes, I get “3 Pack CryoFreeze® Hemp CBD Roll-On | Extra Strength” from OmaxHeathcom" Good luck. Fortunately, for me, she does not have Ataxia. If you have any other questions concerning Ataxia. Please do not hesitate to ask. I have done plenty of research on this terrible disease.
Thank you for the product information. Have you ever read anything that explains why the leg cramps happen at night? I’ve also had a few cramps in the rib cage area, but only during the day.
I replied to you earlier today…I don’t know why it isn’t visible. I could see you’d had problems accessing the group..and today was the first time you were visible to me.
Some of my symptoms can be traced back decades..and I’ve been told that this could indicate a genetic link…but there are many types of ataxia not yet at the point of ‘patient testing’..and I’ll always be wondering.