Cerebellum ataxia

Posted by bweeks4mayo @bweeks4mayo, Jun 15 9:52am

I’m new to this. I have impaired balance, speech. I’m beginning to notice minor difficulty swallowing. I’m going to PT every week and I’ve had speech therapy. No cause has been identified. My diagnosis is based on symptoms only this far.
Are there any other treatments I should explore?

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windyshores | @windyshores | Jun 15 2:49pm

Has anyone mentioned paraneoplastic syndrome? Just curious.

lasks | @lasks | Jun 16 7:39am

I had 4 months of tests to find out the cause of my cerebellar ataxia.

lasks | @lasks | Jun 16 7:42am

In reply to @windyshores "Has anyone mentioned paraneoplastic syndrome? Just curious." + (show)

After 4 months of tests I was diagnosed with paraneoplastic/autoimmune cerebellar ataxia. I am being treated with steroid infusions and IVIg.

bweeks4mayo | @bweeks4mayo | Jun 16 9:07am

That is very interesting.
I hope the treatments are working.

Thank you for that.

jkarmazin | @jkarmazin | Jun 16 9:24am

My husband has been working on a definitive Ataxia diagnosis for 3 years. It is a journey!

bweeks4mayo | @bweeks4mayo | Jun 16 9:34am

Well, that’s not good news for either of us, But it’s good to hear I’m not an exception. I wish you both well and thank you.

stevegrinstead | @stevegrinstead | Jun 16 12:25pm

In reply to @lasks "I had 4 months of tests to find out the cause of my cerebellar ataxia." + (show)

Please check for SS, Superficial Siderosis. Please see Dr. Kumar and Dr. Marsh, Mayo Minnesota. AsSo Dr. Levy Mass. General Harvard. If you have SS, and you have an active bleed, you must get it fixed immediately. Please see; MayoClinc/steve GRINSTEAD. Corrections, the operation was 8 hours and I never went back to Minnesota for a follow up. I will pray for you and all of us with SS. Jehovah be with you.

margaret10 | @margaret10 | Jun 16 6:19pm

There is a gene called SAMD9L which can produce cerebellar inclusions, ataxia, neuropathy, and/or myelodysplasia (low red blood cells, white blood cells or platelets), depending on the location of the mutation in the gene, and on the type of mutation. I suggest you see a neuromuscular neurologist and get your genes sequenced so the doctors know what it is they are dealing with. Dr. Marcin Wlodarski at St. Jude's Children's Hospital put on a webinar a few months ago about SAMD9L - it's likely archived on the St. Jude's website. There were several physicians who gave talks, and you could get some names of experts. One possible treatment is a bone marrow transplant. Best of luck!