Відео

Great information. Thanks!

My husband has spastic paraparesis and he has had a Baclofen pump, a spinal cord stimulator and a consultation with pain management for possible Botox injection and the doctor said he wouldn’t do it because it would paralyze him for 3 months. He will be seeing a neuromuscular specialist in January. He’s 69 years old but he still forces himself to walk with a walker. His knees are turned tight into each other and his right ankle turns and he walks on the outside of his ankle. What can you recommend?

Tradução para o português

Great information!

Dr John is machine of education for hsp population

Amém 🙏

Muito boa sua Palavra

I have an idea. Stop vaccinating people and you wont have these issues.

good session

I have 4 brothers with this . I have 7 brothers in all. My Mom is the carrier of this gene, as was my Grandma, my Mom's mother.

ua-cam.com/video/mg9ypumv1yY/v-deo.html

what part of the brain does hereditary spastic paraplegia affect?

Hello hereditary spastic paraplegia association. I have hsp spg4 and I am followed at the Carlo Besta hospital here in Italy. I have bilateral Babinski with Hoffmann sign and negative to Romberg sign. I also have many other autoimmune diseases unfortunately. I would like to ask if any of the following chronic condition are associated with Hsp: -Mthfr/Sam e dysfunction -Atherosclerosis with Dyslipidemia -Diabetes mellitus 1/Celiac disease/hypothyroidism -Cardiovascular disease -Chronic gastritis/Pernicious anemia -Hfe gene mutation (hemochromatosis) -spastin cross reactivity to Gad65/acetylcholine. I hope to get some answer and once again thank for your contribution.

Since the mitochondria has been mentioned, has never be studied the human microbiota and microbiome in spg4 ? Since the mthf is responsible for the Atp production, are vitamins such vitamin B12, folate, iron, magnesium involved in the spastin neurotocxicity ? Are neurotrasmitters such glutamic acid and acetylcholine involved in the evolution of the disease? Can a prolonged deficiency in folate activates the disease through the Dna deficiency ? I have always read that dislidyslipidemia is always present in the spg4: would then fatty liver disease, metabolic syndrome, autoimmune thyroiditis be present too ?

Очень просим помочь в лечении Нижняя спастическая параплегия Штрюмпеля G11.4

Hello is there anywhere where i can download Hande Ozdinlers slideshow ?

Thank you for having this on our televisions. I have hsp4 and my doctor is Dr.Fink. My question is, what kind of developments for this disease is there to become normal and stable in function?

So my question: is there an enzyme that would break down the mutated spastin?

I have hsp spg4, celiac disease, EoE, Ibs (bile acid malabsortion), lactose intollerance, fructose malabsortion, previously iron anemia, anemia of chronic disease ( High ferritin with low folate), severe vitamin D deficiency and when I went gluten free 6 years ago I developed a metabolic syndrome with high glucose fasting, high tsh, high lipid prifile ( low hdl and really high cholesterol. I had nerves and tendons pain since my early childood. I met my neurologist 2 weeks ago and now I have both Babinski sign and also both Hoffman signs. Despite my situation I found improvement with a pure carnivore diet. As far as I read ( I am more and expert on celiac disease), the hsp is and atp disease. By removing glucose, fructose, high supplementation of vitamin D, by removing gluten( even rice, soya, teff), i have noticed improvement.

Someone could write the question in 51:45? I did not get it. It’s could be one explanation of SPG patients’ mechanism.

A name for my condition that doesn't contain an abelist slur, what will it take? Or is that too much basic dignity for a spastic like me to ask for? I was born with this in the seventies. I've had no support, I've just been shunned, belittled, rejected, neglected and left to fall between all the cracks in our health and welfare systems. I'm over 50. Never had a job. Always lived in poverty with no support from anything or anyone. Now I can't even get a bulk billing GP. Wish I'd just die.

I am so impressed with the huge effort which you have put into making this complex information accessible to non-experts. Thank you

This was great, and thank you especially for the time stamps! 🤗

If you can, please a description of the speaker and the approximate time they speak. Thanks in advance.

😂😂w to make it dz

Hocam parkinson tedavisi varmı lütfen yardım edin

What happens to my spine does it disappear?

Thankyou very much this scary hsp an pinched nerve

I have symptoms of other diseases will it get worse?

Yes I have hsp an it started at 40 I'm 48 now I have a wheelchair thankyou I'm finally starting to learn what have but why?

Thank you !

Stephan, thank you for all the work that you do on this disease, I'm lucky to have you in my corner. thanks

great presentation and work. thanks..

wow great research, great to have Dr. Ozdindler in our corner !

Thanks for the great presentation from Dr. Fink, and for sending it out to me, its a pleasure to listen to his advice.

always such a pleasure to listen to Dr Ozdinler who wants so much to make our motoneurones happy 🙂, Hande you are so clear and passionnate by your research that you bring us great joy and so much hope, thank you, Marie

Dr Baas Thank you. I thought this was the best FSP presentation I've ever been to.

How can I get his email address?

What a wonderful person Dr Ozdinler is, her ability to explain her specialty to folks w/o medical degrees is exemplary.

A very knowledgeable man!!🤗👍

Wonderful to hear someone speaking about HSP ! Thanks for sending this!!!!

i recently got a call from my doctor and they told me my genetic test said it showed it is very possible that I have this

I aso got got 2 children one 12 and other 8 with HSP type 56 as the blood genetic results says.

I have a 16 yrs old daughter with hereditary spastic paraplegia.She diagnosed when she’s 3 yrs old

Good evening, I have just been diagnosed by my Neurologist that I have HSP. I just found out about 2-3 months ago. I am scheduled for a genetics test in Feb 2022. I am nervous but I am glad I discovered this site. It may help me with knowing how to cope with this or maybe one day cured of this by the grace of God. I want to know more about this community.

4 years I've been suffering. And now it's been 2 years that I can't walk without my walker not even one step. I know I have foot drop on both of my feet. But no Dr has been able to help or diagnose me. It's frustrating!

Thank you Dr Blackstone.

what kind of supplements should i take to slow down PLS? I am thinking of injecting humanin peptide.

Great inputs sir,thx🙂

Is there a cure