Shocked after visit to Neurologist

General
21

This was very helpful.

Marie

Charmaine said:

Dear Marie,

You are not alone. I believe you can make it, walk out from the dark tunnel and see the sun again. No need to make a big step or jump, but every little single step and look upward. Support you !

Love Charmaine

22

Hello there
There has already been lots of very good advice.
It is hard being reminded of what you know is happening. Also, I think that you know your body better than anyone. Listen and take on board what the 'experts' say but then go and make up your own mind. Just because he said those things, your body is no different than before you you saw him. Try to focus on that.
I am a great believer in trying to find things that you enjoy doing to keep busy. I too LOVE gardening but there are fewer and fewer jobs I can do (like digging, pushing wheel barrows). Ian bought be one of those wonderful kneelers that have side supports (see link below). It is fantastic. Once I am down, I just work my way around the garden leaving a trail of weeds behind me! I am like a snail. Lucky Ian then has to go around collecting in a wheelbarrow. I am looking at finding a towable cart/wheelbarrow. I think this will help me too.
http://www.amazon.co.uk/Gardman-Foldaway-Garden-Kneeler-Seat/dp/B00...
I know things seem bleak at the moment. I am so sorry that I cannot change that but try to remember that things were better. Ataxia definitely comes in waves. If you are stressed and depressed it is worse too. Our bodies are very good at adapting to new challenges.
Hope things are starting to improve. We have all been there, but for different lengths of time and really understand.
Love Lit X
23

I was told by my Neurologist that I had either an unidentified cerebellar ataxia or MSA. If I went back to see my Neurologist and he told me what you have been told then I would also dismiss any claims that I had MSA as well Marie. Even if I found out it was indeed MSA I'm sure I'd find a way to adapt and accept. Having said that, we are all different individuals. Some cope better than others.

I look through the MSA trust web site from time to time and find it a very useful and interesting site. Hope you find it helpful as well Marie? Most of the signs and symptoms of MSA described on the site reasure me that so far I do not have this condition. Not yet anyway. Fingers crossed.

Marie Turner said:

Thanks for the website Iain.I have just registered although I stillthink I have got an aggressive ataxia rather than Multi System Atrophy.No symptoms of the rest of the brain only Cerebellar Degeneration.Think the Neurologist is barking up the wrong tree. Thanks anyway;it can't hurt.

24

Thanks John.

25

Thanks for clarifying that for me John. Multiple System Atrophy is basically (I think), Atrophy (shrinkage) of not only the cerebellum but other parts of the brain also? I think there are two types of MSA. One being a 'Parkinson' type and the other a 'Cerebellar' type.

26

Hi,

Nice to read that you have improvements with Forced exercise training. I am really believe in this kind of training could help with nerves system disorders.

Could you please tell me more details about the training you have used to do for a year. Please give me more details about the kind of the training what the kind of instrument you are using, and how any times you need to do this training per week. How much time you spend in the training every time you doing this.

Thanks

Best Regards

A.F




Kati said:

I seemed to be going downhill fast too. it was only the last year I got the electric chair with recline as I struggled to sit longer than a few hours.

I've been doing the Forced Exercise for a year and have seen a big improvement in back pain levels, can sit longer, legs are stronger. It activates a different area to the brain than what's activated with voluntary exercise (like pedalling yourself on a manual bike with no assistance). This was found to have resulted in a reduction in muscle spasms and tremors in Parkinson's patients.

I have seen an improvement in several areas, which I never expected. I ony, bought them in mind to try and burn enough calories to lose weight and reduce my back pain to help when had to go out for several hours in chair, so have been thrilled with the results.

It maybe something that could work for you, sometimes we have to take a chance until we find something that works for us.

Kati xx
27

Stem cell treatment for nerves system disorders is a great hope for us. I believe this treatment using stem cell cells wil be a promising therapy for ataxia.

Simply, stem cells nearly to be neurons is injected in the patient and make improvements for the symptoms of the died neuron.

I have a lot of information regarding this issue. Due to my qualification I am planning now to test the safety and efficacy for stem cell treatment in patient with neurological disorder. I hope by the end of my project we will find a new thing to give to treatment this ugly illness.

Still I do not know the exact information for Forced exercises to make me able to repeat the same thing with my own, Please Katti, could you please tell me more details about this exercises.

Thanks


28

I can't over any real advice. If you have not yet been tested for MSA then the Neurologist could be wrong. If your mental health has been effected by the news then I would suggst speaking to your G.P. or other professional about this. Deteiration is horrible but CA is a conition you have not you. Try to remeber who you really are.

Take care

29

hi Marie,

we are all going through this together. don't feel alone. sometimes you have to be your own doctor. if you need meds tell them your symptoms. when i'm prescribed a med i google it first. some meds can put you in la la land. join an ataxia support group. and try to stop crying. i've been there. life has a plan for us. it may be tough. i'm hoping for better things to come. and they will.

lorraine

30

I'm sorry Marie. It is hard to not let things like this get us down. For myself it seems like I always want answers, always have questions until they tell me something I don't want to hear. It is very hard to deal with it... It helps to know we aren't alone and there ARE others out there who understand. Don't lose hope.