gluten cerrabellar ataxia anyone ?

[gemini24]

Hi, does anyone have Gluten Cerrabellar Ataxia, i have it severe ( on brain scans,) and pherripheral nearopathy, spine degenerative disease,arthritas,fybro, cerebrovascular brain disease, few more illnesses too. ?

[HarryB Administrator]

Hi gemini24

Thank you for your post. I am so sorry you have all these illnesses. It is rare to have so many awful things together. Are you on a gluten free diet?

Harriet

[gemini24 in reply to HarryB]

HI HARRY ,YES BEEN ON IT 7 YEARS NOW, YOU GET USED TO IT EVENTUALLY! ITS THE ATAXIA AND FYBRO,ARTHRITAS,VASCULAR B. DISEASE THAT CAUSE PROBLEMS FOR ME , BUT I WANT TO REMAIN WELL AND MOBILE FOR AS LONG AS POSSIBLE, I SWIM,WALK, TRY SITTING WHILE I DO GARDENING ...POTS KEEPS ME GOING. ARE YOU CEOLIAC TOO ?

[motherelle]

I am in the process of being tested for this .I have definite Cerebellar Atrophy and recently had another Spec Mri to see if there has been anymore degeneration .I haven't had the result yet . I also have Hypothyroidism and Fibromyalgia . I'm fortunate that I'm not showing many balance symptoms ,apart from when I'm tired. .I do think my apathy and fatigue symptoms are linked though . I would be interested to hear about your symptoms Gemini 24 . I have been under investigation for 3 years now ,it started with muscle wasting of the hands ,which seems to have settled . I have had 2 EMGs both negative . I forgot to mention that I also have altered taste ,very strong salty taste constantly . I have now gone Gluten free and will continue so even if tests come back negative as I believe false negatives are very common .

Take care .

[gemini24 in reply to motherelle]

HI MOTHERELLE, SORRY TO HEAR YOUR JOURNEYS NOT PLAIN SAILING, AS I TOO SUFFER WITH FYBRO, CERRABELLAR ATAXI CAUSED BY GLUTEN GOING THROUGH THE BLOOD STREAM TO THE BRAIN , CEOLIAC, ETC YOU KNOW THE REST !! I HAVE BALANCE PROBLEMS FALL SIDE TO SIDE,BACKWARDS,FORWARDS, LIKE HAVING M.S./PARKINSONS, WEAKNESS IN HANDS,ARMS,LEGS, PAIN IN LOWER BACK, BRUISED LIKE FEELINGS ALL OVER, SPEACH SLURRED/STUTTER WHEN VERY FATIGUED, SLEEP BAD, LEGS HANG OVER END OF BED,TOSS ALL NIGHT, MEMORY BAD, CANT ABSORB THINGS, SPASMS IN WHOLE BODY, ODD PAINS COME AND GO ALL OVER,

IF I HAD ....GLUTEN I WOULD DISPLAY SYMPTOMS LIKE A STROKE, DIARROREA, EXCRUITIATING TUMMY PAIN,VOMIT, ON LOO FOR 3...6 DAYS LOOSE STOOLS, VIOLENT HEADACHES FOR DAYS, COGNATIVE PROBLEMS, BALANCE ALOT WORSE, SPEACH BAD, HENCE I DO NOT EAT GLUTEN,WHEAT,MAIZE,DIARY,SOYA.

I GO SWIMMING REGULARY TO KEEP ME MOBILE , I USE A CANE STICK, I HAVE 2 WHEELCHAIRS USE WHEN I GET FATIGUED, AND ON LONG JOURNEYS, TRYING TO KEEP OUT OF THEM ITS VERY DIFFICULT AS I HAVE 3 ILLNESESS THAT CAN KEEP ME IN THEM. I HOPE YOUR TEST RESULTS WILL NOT BE TOO STRESSFULL FOR YOU, GLUTEN FREE IS THE WAY, GOOD LUCK.

IF NEAD ANY MORE IMFO. IM HERE.

GEMENI 24

[brighouse]

I was diagnosed with Cerrabella Ataxia (not Gluten) about a year ago. After extensive tests. Affected is my ability to write clearly (unsteady in my movements) Am not able to co-ordinate my movements, resulting in having to walk at home with a walking stick. Cannot walk out of my home without personal assistance,

either, using my 2-wheeled 'walker' or if going any distance, being pushed in my wheelchair.

I have been told there is no medication available to help. There are Ataxia sufferers Societies, merely to gather from time to time for friendship, and to keep up abreast with any developments.

If anyone has any suggestions, I'd be pleased to hear from them......Bill Leach aged 89/90