Introduction - new member

Hello, new to this board, and look forward to interacting with everyone. I am 47, diagnosed with PN and Cerebral Ataxia last year, after a car accident in '16. Diagnosis was that both trauma and long term alcohol use were the cause…double whammy. I no longer drink, but Ataxia is progressing. My PN, “pins and needles” have gotten much better with Gabapentine, but I realize it may just be masking the pain. I look forward to hearing from you, and sharing info.

Hi Zillet, welcome :slightly_smiling_face:
My type of ataxia is still in question but an appointment with a new Neurologist later this year may shine some light :wink:
Pins and needles, and tingling, are quite common :smirk: I haven’t tried Gabapentin but there must be plenty of other people here who have. You can view previous discussions by clicking on the magnifying glass symbol near your profile picture :slightly_smiling_face:
You must have had quite a scare with your car accident :smirk: I once just slid on ice in the dark (downhill) and then had a seizure in my sleep :grimacing:
If you’d like general information about ataxia, log onto :slightly_smiling_face: xB

Thanks for reaching out. :grinning: Do they know if its hereditary? Such a strange and scary disease. I have hope though. After I totaled my new car and got a concussion (and 4 broken ribs…grrr), my PN got really bad, and gait issues soon followed. I have researched, and tried tons of supplements, and my symptons seem to be intermitent. Some days I can walk real slow w/ wide gait, some days w/ a cane, some days w/ walker, some days I have to “butt scoot”, and can’t leave house. I don’t know what is working so I am taking everything, even doing daily B1 B12 shots that I give myself. I think part if it being intermittent is also mental/depression. Seisure in your sleep, you must of got a concussion…ouch!:grimacing:

:slightly_smiling_face: No, I didn’t have concussion. The car stopped sliding just before I thought it would hit a parked vehicle :pray: and no-one was hurt. I associate the seizure to the scare I had, and a then recent history of deja vu :smirk:

My ataxia isn’t Acquired, as is yours. Mine may eventually be confirmed as being genetic, because a partial link has been found with a mutant gene. But the link isn’t 100%…

No matter what type is diagnosed, we all share very similar symptoms. So, everyone on here totally understands. It’s a common thing to hear someone say ‘ I feel fine sitting still but as soon as I stand :woman_facepalming:‘… Many people do have days, or even weeks, when challenging symptoms seem to be worse. Then, for no apparent reason, a cloud lifts and life is ‘near normal’ for a while. Ataxia is unpredicatable, mostly it’s easier to just go with the flow :slightly_smiling_face: There are just so many different types, with differing rates of progressions…

I have many days when it’s just too much effort to do anything other than lie on the sofa and zone out. Fatigue can be very debilitating and it’s very common. But usually it passes in its own good time :crossed_fingers: Indoors, I manage to walk around fairly safely, unless I turn quickly or bend/stand up :grimacing: then dizziness sets in and there’s the chance of a fall. Outdoors, I always use a walking stick, or a rollator. Mostly, I’m bothered by heavy headedness/brain fog. Then, multitasking or any kind of decision making is totally out of the question :woman_facepalming: and like you, I wouldn’t dream of leaving the house. My memory is becoming worse too.

Alot of people take CoQ10, I take Ubiquinol because it’s said to be better absorbed by women past menopause ( too much information :wink:). And, I’ve recently started taking vit B12. Some people are actually diagnosed as being deficient in CoQ10, and also vit B12, deficiencies of either can be a cause of ataxia. But of course, it’s advisable to have this confirmed by a Neurologist.

Be kind to yourself, exercise when able and within caperbility (any movement is exercise :wink:) xB

Yeah, the ups and downs are tough. It’s hard to commit to anything, as I don’t know what shape I will be in on that day. :grimacing:. Whats strange, is that even when I can’t walk, I can use walker out to garage to get on my bike and go for a ride. I can bike fine. Now the hard part is stopping. I have taken many falls on my bike, but I enjoy it. Yep, CoQ10 is part of my many supplements, along w/ biotin, omega3, Vit C,D,E, ALA, Folic Acid, Creatine, Cranberry pills, and B1 and B12 shots I give myself, to name a few. I also take several Asian herbs. Also tried Prednesone. Looking for that magic bullet, than I will create a formula to share :grinning:. I tried NerveRenew, but nothing.

You may find it interesting to read about “gluten ataxia”.

:hushed: You can ride a bike…amazing. Is it a regular bike, recumbent, other :thinking: xB

:thinking: Shoaib, I know you have SCA6, do you also have Gluten Sensitivity :slightly_smiling_face:xB

Yes. I am one of those 37% who have Gluten intolerance. i had only one episode but my sister had multiple episodes of " dermatitis herpetiformis" until both of us came off gluten.

It’s an Electra 7 speed cruiser. Once I get momentum, I can pedal w/ zero problems. Again, stopping and starting are dicey, as my legs shake, and give out. Worth the risk, as I feel 100% healthy when riding. Well, when fatigue isn’t kicking in. Its my biggest joy these days.

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:slightly_smiling_face: I like the fat tyres, wish I could balance and keep momentum :smirk: Maybe I should look at tricycles :thinking: xB

:smirk: I have a friend diagnosed with Gluten Ataxia, so I’m aware of the challenges. The smallest trace of Gluten can cause havoc. She also has to screen medications. My daughter is also diagnosed with Gluten Sensitivity, and Eczema. Since diagnosis, and avoiding gluten, I’ve noticed less complaints about Eczema. I still wonder if she’s also Lactose Intolerant :thinking: xB

People with Hereditary SCA have a 37% possibility of gluten sensitivity. The routine blood tests for gluten sensitivity is usually for people with" celiac disease" and does not include Ataxia patients. You can do " Transglutaminase 6 Antibody" but is very costly and only in the experimental phase and done in limited centers in US. So I thought, it’s easier for me to go “Gluten Free”. If there is less then 20 parts per million in a food item, then it is considered “gluten free”. There are many places & restaurants that sell gluten free foods, but you have to be careful about “Cross contamination” from other sources. So far so good. Keeping an eye out on ongoing and new researches for SCA.

Lots of trike options. I was checking out this electric one
I have 3 cruisers, one has an electric motor in front wheel. I can boost and assist up to 25 MPH. If not a trike,u should practice on a stationary bike first, and then a fat tire. I need to ride , or my legs atrophy, and more problems. Plus , its so fun. :grinning::grinning:

:slightly_smiling_face: I’ve met Prof Marios Hadjivassilou who devised the latest test for Gluten Ataxia, and tested negative myself (in the UK). Personally, I feel better by not consuming yeast products, and keeping sugar to a minimum :slightly_smiling_face: xB

Most of the Gluten Ataxia papers are published in UK. Most of the neurologists here in the US are still not caught up to it yet. You may have read “Grain Brain” by Dr. David Perlmutter. Interesting!

:slightly_smiling_face: As it happens, I had that very book recommended to me a few years ago. It proves you are what you eat :wink: xB

I too once had a recumbent bike (with 3 wheels) now I just use an indoor exercise bike.
I am convinced there is some sort of correlation between our gut and ataxias. I am a firm believer that diet and exercise are a major factor in gut health. Maybe it’s simply hocus-pocus but here is a recent link posted on fb.

I agree. I jacked my GI tract w/ alcohol. now, in long recovery. I wish article gave suggestions of diet.

I was diagnosed with Candidiasis, a overgrowth of yeast. This can lead to all kinds of symptoms throughout the body, it can even cause Neurological problems similar to ataxia. And, it can also effect men.

We know that Gluten can be an attributing factor to a specific type of ataxia, which is Neurological, so it stands to reason that the digestive tract may be at the crux of the matter for other conditions :thinking: xB