Hi Ladies...finally got my PM's thanks for those...

The ataxia website will be a great resource for me. She is in PA; I'm in Houston, so I don't get to see her, but I talk to her on the phone. She gets tired very easily and that shows mostly in her speech. She is getting on at the Manor and we (my sisters and brothers) have actually (we think, hope, and pray, ) that we have convinced our Mom to go there too. She suffers with post polio syndrome, which doctors don't really know about - they just say we cured that in the 50's. but we all know it is still around. She just had a pacemaker put in last week, but really no different. She turned 86 in the hospital and they treated her special. So she was happy. This will be very difficult for her as she has lived in the same apt. for over 50 years , but I try and help her understand - she has the memories; she can take them with her. Her sight is bad and she feels that she can feel her way around there, but in assisted living, someone would be there if she fell.

Sorry to have gone on...never know whent I'm going to do that. Was going to put a pic of Pat, but it didnt' work. Thank you for your concern, your knowledge and your caring enough to share what you know.

Gratefully,
Cathy

After browsing here and there on this forum as a new member, after a few days of searching where we might "FIT" , I FINALLY, FINALLY found this pearl thread --- thank you!!

I would love to hear more from Cathy and Louise, it's been awhile since you last posted. How is everyone doing??
(Cathy -- I live in PA too, right outside of Allentown -- eastern PA).
(Louise -- Ours is an hereditary Ataxia, too - 'SCA, type unknown' dx. I've tested for some of the commercially available types of autosomal dominants (we have at least 3 generations' worth of affected individuals), but all to no avail as of yet. I have a young son and some nieces/nephews who are at risk of inheriting the faulty gene (50/50), and so I plan to continue with the testing in the future, as it is relevant. Fortunately, I am in the mild stages at this point.

Take care and I hope all is well.

Hi Color and Louise....Cathy here! Lots of updates and different information since last I posted.
Pat is still doing okay, although she feels progression and it is hurting Mom so. Pat is an interfaith minister and she spends her time helping patients and family members who are in the hospice program at her facility. Personally I think she is too "hermit-like" but she does seem content and happy when we talk and so we just pray.

Mom is living with my husband and I in Houston since Aug. and she seems to be quite content. My hubby has been just great and she gets along with him really well. We had both her eyes operated on for cataracts - got new glasses - but the macular degeneration appears to have progressed and so her sight is still pretty bad. We're hoping in time, it will get better. We also saw a fellow who was supposed to get back with us about mounting her shoe somehow to help her foot, but I think and guess he really doesn't have a clue about what to do.

So all is grace and one day at a time is the only thing we can do.

Thanks and hope you are both doing well. I have recently been diagnosed with Fibromyalgia along with the RSD - so I'm learning little by little more of what so many of you are dealing with. My prayers are with you all.
Cathy

Greetings Cathy!

Thanks for the update --
I'm so glad to hear that your sister Pat is living day-by-day with this and doing just fine. And yes, spirituality is the best medicine, all-around.

And that's great that you're taking care of your mother -- I'm sure she is forever grateful to you and your husband for opening your doors to her.

I apologize for not knowing, but what is RSD? Since your own particular ailment(s) have surfaced, perhaps you can try to post in a different folder if you need support/advice?

As for me, I'll be going to yet another Ataxia specialist in a few weeks for a third opinion. Fortunately, the progression is going slowly for me: I'm still very, very ambulatory -- the main problems for me right now are balance- and coordination-oriented. Yet they're quite manageable -- moderate exercise and eating well are working just fine, thank the Lord.

Take care, and blessings to you.

Christina

I too am glad I found this forum!

I was diagnosed with SCA3, also known as Machado/Joseph Disease in August,2006 after finally consenting to genetic testing. I wonder what you mean by "commercially available types of autosomal dominants." I inherited from my father who was part of the orginal family being tested in this area...(New England) in the late 1960's.

My symptoms of poor balance and poor coordination started when I was 53, I am now 60. Mine is considered late onset and progression is slow. Sometimes I use a cane and need to be very aware and careful not to fall. I just saw the neurologist this week in Boston who is following me and he said there has been virtually no progression since January. Hooray!

He encouraged me to do the exercises I learned in physical therapy to improve balance and leg strengthening. ( I have been lax at this.) He says that new developments look promising in finding treatments to halt or at least slow the progression.

Hope you are doing well.

My brother has been diagnosed with Ataxia and has been told by the Mayo Clinic that there is no hope. We have now decided to send him to China for Stem Cell Injections (). It is the only option that we have except for death. This was his choice, and not ours, but we support his choice. We have met others have have gone to China and this has been a huge improvement, not only with Ataxia, but other diseases. There is no way we could do this in the USA.

I very sorry to hear of your brother's condition. Has he gone to China for the Stem Cell Injections and if so has there been any improvement?

Do you know what type of Ataxia he has?

Wishing good things for you all.

I have Gluten Ataxia. In November 2005 I had what started like a flu. Imediately transitioned into Ataxia. I could not walk without holding on to someone. I had a pull to my left and as I walked arm in arm with someone we looked like drunken sailors. I could not think my way out of a paper bag. Couldn’t find words while talking. I would choke all the time especially on water. My face would swell and in general I looked very bloated. The lower left side of my head in back would swell. I would lose control of my bladder if I exerted myself in the slightest. While sitting in 70 F degree room I would have cold spells where my right foot would hurt from being so cold. I would have 7 layers of clothes and blankets on and it would take an hour or more until I warmed up. My nose was always the hardest to warm. I had blackouts while doing something. One time I came back when I was reaching into the oven to remove a pan without an oven mitt. I would be in the middle of holding a conversation and just stop going off into space. When I returned I had no idea I had vanished and the other person would ask if I was there. Memory was terrible I broke down in tears when I could not remember how to spell my daughters name on our Christmas cards. My writing became terrible and I felt like there were vibrators inside my arms turned on all the time. I had terrible stabbing shooting pains at random in my arms and legs. My coordination was not there. I would fling things and drop them. My vision would get blurry and I could not read. One time I was walking across a parking lot to the doctors office with my mother and a fire truck went blairing by. I froze. I was unable to process the loud noise and walk at the same time.

December 2005 I went to Mayos where their tests did not show the cause and therefore it must be in my head. January 2006 I found a neurologist who was also a psychiatrist. He assured me it was not in my head. He did some good old fashion tests that did not cost anything. He had me sit on a backless stool while asking me questions or having me do another task like tap my foot. He had me clap my hands and tap my feet. Walk in different ways and after many different tests bench marking them against my husband or other willing participants diagnosed me with cerebellar ataxia.

Now he said we need to figure out the cause. He narrowed it down to an autoimmune or virus attacking my cerebellum. He started with the autoimmune and sent me off to a doctor who put me on stuff to calm my immune system. I stopped eating all wheat, spelt, and dairy because I heard it causes inflammation in the human body. I got better in November 2006.

2008 I start having the symptoms come back. I stumble across an article in Living Without on Gluten Ataxia. The wife of the man the article is about has a post earlier in this thread. So I take the article into my doctor and tell him that I am starting to get the symptoms back though not any where near as severe we have to stop the progression. He says lets talk about what we did right before you got better. He reluctantly decides to order the blood tests because if this is what is causing my problems I should just do a gluten free, casein free, dairy free diet now. The blood tests come back negative but I started the diet immediately after having the tests done. I am already seeing an improvement. So he diagnosed me with gluten ataxia. Later we find that there are so many false negatives that the test results do not really mean all that much. We should have did a scope.

Well here I am 100% recovered only better because I do not remember feeling this good since I was 17-24. I ran this morning 1.5 miles. Used my Nordic track for 20 minutes and the total body gym for 20 minutes. My energy is incredible. People notice a difference just looking at me. My stomach is not all bloated. I am still healing as I do not absorb my b12s from my food yet. I have to take supplements for some other vitamins that I am not absorbing well yet. But I feel great!!! Oh, if I slip up and have dairy or gluten (unintentionally) I get a glimpse at my old life and wonder how I did it. There are many document reasons why people with gluten intolerance or celiac have problems with dairy. If someone wants to try to see if this helps them I strongly urge you to cut the dairy out for one year then introduce it again and if you have problems do not eat it.

A great dvd that I found from Dr. Thomas O'Brian Unlocking the Mystery of Wheat and Gluten Intolerance. While securing booths for a gluten free symposium I went to a GF bakery. The owner insisted I watch this video. I wish I had known about it in 2005. My neurologist borrowed this to watch and share with other doctors. I could only find it on Amazon.

I hope this helps someone!!!

Hi, The story in the Living Without Magazine,is my husband and my story.. Yes he too is doing Very Well on a Gluten Free diet.. .. You can e-mail me if you would like.. Linda

Cathy my sister sent me this website to look at (must be a sister thing). I to am very independant and have suffered for 4 years. I have gone to a gym and exercised everyday for a year to correct walking and strengthening leg muscles. Working as a carer. Royal Brisbane Hospitial Drs said to me, see you in a wheelchair. That's when I said to myself no way and joined a gym. I guess its like cancer you don't know the outcome just have to strong and deal with whatever you need to.

Louise, i'm not sure if you get this or it's the right way. I would love to know more as for 4 years I've been suffering in silence with a probable spinocellabellar ataxia as I have had a spinal tap and numerous MRI and CT scans only making it difficult for Drs to diagnose. I exercise learn to keep walking heal toe and see a Occuptional Therapist for writing (which is still literate) Found work, and I am with a Company that know I have a limp and writing disorder, although diagnoses has not been made. My name is Sandy and I live in Brisbane, Australia. Would like to have contact with you and more information. Your reply as soon as possible would be appreciated.


Cheers

Sandy