I went on Friday to have my annual check with the Neurologist.I went armed with questions and a husband.
It seems my Ataxia is not an auto immune thingy,nor is it gluten.I did try the diet for 5 months.
My Ataxia has some elements of MSA Cerebellar but does not conform in all ways.
Its all a bit of a mystery but he did say there was a lot of research.It could all change anyday .
Also my Ataxia may plateau.He had known it. I felt a bit more optimistic in all the gloom and doom.
Most people on this site are very positive.I wanted to share this bit of optimism with you as this disease can certainly get you down.I cried and cried when I remembered what I could do but I kept remembering the words of others on this site with all sorts of different Ataxias.
You really help.I remember the encouraging words more than the so called experts.Keep encouraging.I need it .
And vent to your hearts content.Better out than in.
Things that help.
Remember it is only one part of my brain that is affected.
.Don't put on rose coloured spectacles to view the past.
This is a new chapter
These thoughts have helped me.
Aw, thanks for sharing Marie .. always good to hear from you.
Neurology appointments can be so disappointing and depressing. I confess that I cancelled mine last year so havent been for nearly 3 years. My next appointment is July.
I always encourage others to go but dont go myself!! I know it helps 'them' with their facts and figures for research and statistics and ultimately of course, future generations but.... leaves me feeling like a hypochondriac.
This is my favourite forum - it helps me keep things in perspective.
Let's keep counting our blessings and do what we can and forget what we cant.
Hugs to all, Patsy xx
They want to check on progression .No change for them is good news.
Your positive approach encourages me and I need to be very positive now although the cant’s are slowly building! It is a welcome idea not to,take the neuro advices seriously. I am sure all our family members will enjoy reading this post. Thanks and good luck always.
It is a whole new book!
Onwards and upwards!!
Hi Marie I like this Forum also. It is a great place to vent. And everyone knows so much. I don't see my doctor till May. I moved up to seeing my doctor yearly. It was funny. I just went for another MRI. And the nurse called me with the diagnoses. It was funny because the nurse could not believe what the doctor told her, about not being able to do nothing for me. I told the nurse about LWA sight. And we knew more then our doctors. Then the nurse laughed. So in May I see my doctor to tell her some more that they can put in the log books about Ataxia. Shriek's favorite line. "Better out then in"
Hi Folky; I went to the doctor every 6 months for 2 years. When they realized there is nothing they can do. It was changed to Once a year. Unless I needed one.
hi,i have my neurologist appointment due in april.the hospital haven't sent me yet a confirmation letter to .i see my neurologist every 6months.it feels more like appointment,a 6monthly check up.i wished it was only once a year I see him...I don't really know what to tell him,apart from "no change" since last time......I don't know why he wants to see me every 6months
I'm a newbie here. It must be so exciting to hear there is at least a possibility your Ataxia will plataeu! I hope you aren't suffering too badly right now. All the Ataxias are such horrible diseases that I'm finding out no one understands. I know I'm going to love this forum, it feels so good to hear from others who are dealing with a disease that I have, I already look forward to signing on each day. It helps so much to know everyone has a place to vent and still share their positive feelings. Both the venting and positive thoughts help me feel I'm not alone.
Thanks for your optimistic appointment info Marie! Yes, I agree, this site is wonderful! I had my yearly appointment in January with a new neurologist/researcher, as mine retired last November. I liked him very much and so did my husband (he went with). He wants to see me again in 6 months, as I'm a "newbie" to him. I agree with Marie, as the reason for yearly (or more) appointments is to check progression or change. My neurologist checks for MSA-C (Multiple Symptom Atrophy-Cerebellar) or MSA-P (Multiple Symptom Atrophy-Parkinsonism), due to the fact that I have Sporadic Cerebellar Ataxia (unknown cause). Apparently my type of ataxia can turn into one of these types. Anyway, my old neuro wanted an MRI every 5 years (I had one at diagnosis 10 years ago, which showed atrophy in my cerebellum (of course, other things were being ruled out like a brain tumor, stroke or MS etc.), one 5 years later, which showed a bit more atrophy. Seeing how it's been 5 years, I expected him to order another MRI. He didn't, as he believes additional atrophy is not necessarily an indicator that ataxia symptoms will be worse...,who knew? I don't know how I feel about that, but will go with it now as he's the expert. He said to continue to do exercises (safely) for strength and balance. Apparently there's successful studies an rodent brains, that show the brain can make new neural pathways. My neuro said the key is to keep challenging yourself. For example, I do a balance exercise standing at the ledge between my kitchen and family room, in case I have to grab on. I stand on one foot for as many seconds as I can, and then the other (i don't hold on). The key is to keep trying to up the seconds you do this exercise or any balance exercise. If you "Google" balance exercises, you'll find some sites to look at. Sorry to go on and on, as I'm just trying to be helpful! Also, welcome to this site Marie! There are wonderful people on this site with different types and degrees of ataxia, for different reasons. Even so, we all share common symptoms, so we understand and can be supportive of each other. Yes, you are not alone in this journey! One of my favorite saying is (I've posted this several times before, so those of you who've read it, please forgive me...,ha!),"I may have ataxia, but ataxia doesn't have me". ;o)
I am not so advanced in the investigations of my ataxia. I am still waiting for reflex tests at the neuro physiology unit and a lumber puncture. The thing that depresses me is that I am used in the past to be tall and elegant, now I am getting bowed down with the difficult in walking and my main problem is balance. I go for about 10 minutes and then my feet don't know where to put themselves and I overbalance. I am depressed terribly with tension headaches and not exactly how you feel. My thoughts are with you - keep your chin up and I will stay in touch. Lisa
Thanks for the vote of confidence.I don't always feel positive and have my ups and downs.
I have had 5 years to research the Ataxias.From what I can make out we are each unique and our pprognoses may be different.
Mine looks aggressive but who knows what is round the corner.Sometimes I feel as if I have had some sort of life even though a lot of it has been awful.I am not depressed now and I think my Ataxia has made me a better person.Also I have had some very good times with my Ataxia and I am sure there will be many more.Just a small note of encouragement.
I think the worst part of thiis disease is the mental torment.Overvcome that and the physical will seem less important.
I couldn’t agree more with the mental torment Marie! ;o)
Here is what I have found out about what I call the darkness, shadows whatever we want to call the mental prison we live in.
I used to "fight" the darkness, who wouldn't? But as much as I tried to fight it, it just seemed to feed it and grow it. I realized I have not accepted the real human aspect of feeling bad or down or what your darkness is. I was certainly not the only one who feels this. Is my non acceptance the problem? Let's find out. I learned we can accept something and still not like it.
I decided to make my darkness my casual acquaintance, meaning when he shows up, I do not fight him, I do not engage him. I smile at him say hello and "BE" with it. Not judging it, just being AWARE of it. I found that it melts away sooner if I just own it, it is me, always will be. Fighting yourself is pointless.
As time moves on I can recognize my old friend from down the street before he even knocks. I open the door and let him in. He knows not to stay too long, the more i welcome him the more he loses interest in getting the best of me. I will own my darkness as long as I live, it does not define me, nor does this disability. I define, I choose my feelings as best I can and when whats his name shows up...I just sit down and have a cup of tea with him, I got to tired of fighting him and he always has a key to the house.
Bravo Michael, very well stated and honest. Most importantly, very true.
Keep moving forward.
Julie aka Sparkles
You go Michael! Sounds as though you have a positive attitude, and that’s half the battel! ;o)
Bravo! Acceptance, one of the most difficult balancing acts between our mind and our hearts. We all have what I call a ‘DARK PASSENGER’ who lurks in the innermost recesses of our being, waiting just waiting to be recognized. I couldn’t have said it any better.
I have a diagnosis of MSA-C and my symptoms do not conform either so officially it’s listed as “possible” MSA. It can only 100% certain when they do an autopsy, so obviously that’s not an option! As I had more than one symptom of MSA they did a PET scan (basically a radioactive CAT scan), which showed low activity in three different parts of my brain. Based on that, they’ve said it’s 80% likely that it’s MSA.
Even though this was devastating news, I’m grateful to know what I’m up against and am living life each and every day. Your positive attitude will help you get the most out of life. Stay strong!!
I'd admire your positivity Kathy! Bravo for you!!! ;o)
Thanks for sharing.Now I am confused as to which group to belong to.
I got the impression my Neurologist was trying to find a label but like you I only have elements of MSA.He went off on a tangent when it was discovered I had low blood pressure.I have always had that,had two babies without any ccomplications,gave blood and I have never fainted.
I also had two autonomic tests which were fine.I think he was barking up the wrong tree.
He said I have some elements of MSA.He could not find a genetic link and the progression has been rapid.
I am more concerned about my carer who happens to be my husband if everything goes.
Sounds as if we are going on a similar journey Kathy.
Do keep in touch.