CONFUSED with MY diagnoses/ Cerebral Ataxia.

[kuchee]

I was diagnosed by a senior neurologist in 2015 for SCA after observing my symptoms of imbalance, coordination and walking examined etc and was prescribed heavy vitamin doses. Fortunately the meds worked very well and my symptoms were vanished 80-90%. I took the medicines for 4 months and then stopped as they were too much expensive for me to afford.

Leaving meds after 6 months the symptoms recuperated and till now I am suffering with progressions in symptoms invigorated by duskiness, vertigo and wobbling while walking OR standing up I am in swaying position.

Again, 5 month ago I visited GP and was prescribed Vitamin E(400mg)+Q10 (100 mg)+Vitamin B Complex X once a day, continued to 3 months.

Then 2 months ago My GP has now started new meds called Levadopa/Carbidopa/Entacapone. Frankly it is working better and my movement is much improved and wobbling go after having meds effects of 2,3 hours and sustains for almost 5-6 hours (till its on-time).

Actual confusion raised here that l-dopa/c-dopa is for Parkinson decease and I unable to comprehend now what my diagnose really are?? I am taking all my foods related to ATAXIA and PD has different nutrition’s plan. Reading studies, researches and hypothesis etc according to my first diagnoses.

Actually both deceases are different with similar symptoms and had done my posts for these as well at forum and had good feedbacks from people for good elucidations but now after examin of my condition after new medicines Am REALLY CONFUSED!

I will write further detail after meeting my GP next week. Meanwhile any suggestion may be appreciated please.

[pinjem]

If you find reading is OK, there is information on SCA here that may help? ataxia.org.uk/faqs/spinocer...

[wobblybee]

🤔 You mentioned your Mother had similar symptoms, was she actually diagnosed with a specific type of Ataxia.

[kuchee in reply to wobblybee]

She wasn't diagnosed with specific type of disease and passed away at very young age at 45. Now i am almost at the same age of her but luckily have found out the disorder examined by neurologist. Sibling do have the same problem noticed as well.

I am in contact with hospital for proper genetic testing but seems its very expensive as we don't have insurance cover in our country.

[wobblybee in reply to kuchee]

🤔 Have you had an MRI. It would confirm if there was any Cerebellar Atrophy, but unfortunately it won’t tell you exactly what type of ataxia is causing it. Yes, Genetic testing can be very expensive if you don’t have insurance cover 😕 But even when testing is possible, it’s not unusual for the exact type of ataxia to remain a mystery. There are are so many different types, and new mutations of existing types are being found. But, if you do find testing is possible, the very fact that you have a sibling with the same symptoms may help.

[kuchee in reply to wobblybee]

As per my study i have SCA1 or 2. Some symptom are in both of these and more importantly the symptoms of me started at the age of near 40's (progressive) . I have brothers 45, 57 and sis 47. the rest all are okay. its in figures sets in almost 50% share of the family. My mother also started the symptoms near 40 and her parents were absolutely clear from the symptoms.

I am not into have testing it but for the sake of my kids i am on to do so but for my kids i didn't have my mind yet and perhaps might not be doing any testing and thinking of perform testing when they are grown up and prepare for marriage and having already plan for kids so they can have the gene alterations for upcoming generation safe from this disorder.

I also have been studying about research at UK Ataxia and hope they find some good news for me (SCA1,2) solutions by 2020. Not so very far! Do you have any update of this?

[wobblybee in reply to kuchee]

🙂 It would be wonderful if we had news of a cure, or at least some way of stopping Ataxia in its tracks. Unfortunately it doesn’t seem likely by 2020, but at a recent National Ataxia Foundation Conference ( in the US) a key speaker announced that within the next 5yrs there will be more than one viable treatment for Ataxia.

Any current finding about research is available on AtaxiaUK, but you can also look on ataxia.org (National Ataxia Foundation) for reliable information about research and ataxia in general.

Predictive Gene Testing before having a family is certainly worth thinking about. I’d do this myself if I was younger, and definitely knew I could pass on a mutant gene. But I wasn’t properly diagnosed with Cerebellar Ataxia until my youngest child was 16. And even now the exact diagnosis is in question. Current thinking is..either a type of Episodic Ataxia, because my symptoms correspond ( but I don’t match any findings). Or, CANVAS ( Cerebellar Ataxia with Neuropathy and Vestibular Areflexia Syndrome).

It’s interesting to keep up to date with research, and read as much as you can about Ataxia in general. This is such a confusing disease for so many of us, just having a basic understanding can really help🙂

[ddmagee1]

I have been diagnosed with Cerebellar Ataxia, and Parkinson’s Disease, with both having separate pathologies. So, it may seem confusing to you, but there are aspects of symptoms of both diseases, that are similar, such as balance and gait. Levodopa/Carbidopa, in the form of Sinemet, along with B-Vitamins, have been prescribed, and help me, a lot. If Levodopa/Carbidopa helps you, and relieves symptoms, that is because it replaces, lost dopamine, in Parkinson’s Disease. You may have both ailments, in which case, a movement disorders specialist, would have the qualifications to sort out the differences, and what is what, in your case. I would recommend getting another opinion, from a movement disorder specialist.

[kuchee in reply to ddmagee1]

Thanks ddmagee1, your comments are much appreciated and believe both Parkinson and Ataxia could be jointly participate in symptoms. Thanks a lot for your input. It sounds a positive to know and helped understanding the Jigsaw. I will try to consult another Dr. as well for second opinion.

for now i am having l-dopa/c-dopa medicine along with Q10 for cellular activities. I might add B -Vitamins to give it a try for few weeks. Let hops for the best.