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Ataxia Support Network

MSA (Multiple System Atrophy)


#1

Hi there! I m Francine . I was diagnosed last March after symptoms got to me but results if tests came back normal. Finally, I did a 10k walk and I was slow by 21 MINUTES!!! That is like a lifetime. Then I knew for sure something is up. All my “automatic” systems are ok- no pain. No walking devices although I may get a walking cane soon. Main symptom is dizziness, loss of control on the right side, difficulty speaking and writing, loss of appetite. Not taking any meds. I see a neurologist every 6 months. Prescribed exercises by PT but is getting more difficult Seeing alternative dr who gave me stem cell in pill form which I started taking last June. I’m slow. Get tired easy No guarantees this stem cell would work- 3 months to 2 years. That’s where I am right now.


#2

Hi Francine🙂 I can’t imagine doing a 10k walk, even before my ataxia symptoms set in, well done🙂

I don’t have MSA but I can empathise with most of your basic symptoms. At the moment, all I take by way of medication is Sertralene, a mood enhancer, and most days I really need it😏

Although I was only diagnosed with SCA in 2011, debilitating symptoms had worried me for about 20 yrs. The problem was getting a Doctor to recognise something was wrong.

The only way I can deal with this new way of life is to take it one day at a time🙂 On good days I take advantage of the energy😉 Other times I have to listen to my body, and just rest😏

You may not be aware but the general advice is that Stem Cell Therapy doesn’t change ataxia symptoms. There have been some successes by researchers into MS but nothing as yet for ataxia.

You might like to look at Medications for Ataxia Symptoms.
www.ataxia.org/pdf/Medications_for_ataxia_symptoms.pdf
Also, www.ataxia.org/pdf/Sporadic.pdf

:slightly_smiling_face:xB


#3

Thank you so much. It has taken this ling to respobd though. I am dealing with this I decided to give the stem cell a try. I decided against all forms of prescription Goind on 1 year since I was diagnosed , 3 years since I noticed something was up.

I travel a lot. I have noticed a decline on energy level. This might be my last yr of travel. I do go day by day. Agaiin thank you.


#4

I wish you all the best with your decision🙂 Please keep in touch🙂xB


#5

Hi Francine,

I empathize with your story because I have been right where you are and I vivdly sense the emotions and feel the sadness, uncertainty, and dread of all the things you have to encounter daily.

Do you know the type of SCA you have? They each progress at different rates. I an single so really needed to work to take care of myself. I did receive stem cells in Bangkok. I can’t say for certain or not if it helps. I certainly didn’t get a vast improvement in symptoms.

The only thing that would cure SCA is CRISPR CAS 9 gene editing. There are doing a research trial on 86 patients in China, mainly cancer, sickle cell disease and a few other. There is a trial set in 2018 at University of Pennsylvania for melanoma and another cancer. Papers have been written in medical journals discussing gene editing for neurogenerative diseases like SCA.

This exciting news. We just need it NOW. I wanted you to know about the new research and let you know a little about my story.

Warm regards,
Piper


#6

The CRISPR CAS9, when successful will become a cure for many diseases, since it is targeted at gene editing. In the meantime, various pharmaceutical companies are trying to come up with a 'glutamate modulator" for SCA, which will lessen the toxic effect of over production of glutamate on nerve endings. Biohaven just completed unsuccessfully their BHV-4157 trial. I had been diagnosed with SCA-6 5 years ago, although the symptoms started almost 12 years back. Keeping my hopes up.


#7

Hi Shoaib,

Yes, I’m definitely keeping my hopes for gene editing while staying on the diet that works best for my particular SCA8.

All the best,
Piper


#8

Which diet is that, Shoaib?


#9

Hi Carol,

The diet that works best for me is a ketogenic type diet. If I ate gluten and dairy I would not be able to walk and I have terrible vision problems and imbalance with dairy products. I mainly eat grass fed beef, chicken and fish and green veggies. Even organic cooking oils affect my ataxia ( SCA 8). This means I rarely ever eat fruit also as it causes dizziness. It is a very boring diet but I’m still walking although I do have balance issues sometimes. I was diagnosed in 2013 but started having symptoms in 2011.

Kind regards,
Piperj


#10

:slightly_smiling_face: That’s very interesting Rufus. I’m posting a link about Ketogenic Diet, it can be beneficial to specific types of ataxia :slightly_smiling_face: xB