Huntington's Disease

Posted by SISTERLOVE @sisterlove, Oct 18, 2011

My brother is 68yrs. old suffereing with Huntington Disease. Can barely walk and has lost about 50 lbs, in the last few years. He resides in a nursing home for his care. Anyone experiencing or a loved one with this horrible illness? Also have checked our family tree and no one had this. It is a inherited disease, and yet I can not find anyone in the family that had it. Frustrating & Hearbreaking.

Iam 55 years male & have been suffering from CSVD for the past one year.Took MRI Brain which shows Brain Shrinkage. With tremors & Ulnar Neuropathy problems,for the past one year I am not able to walk due to my left leg swelling. Blood thinner helped me. Now for the past few days I am dashing towards any objects i,e, wall, floor, cot etc. and got hurted. Tiredness and lack of concentration is there. Not able to perform work perfectly. Kindly reply whether I am having Huntington disease.

Liked by chinasmom

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I don’t have any family history relating to Huntington disease

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@venki

Iam 55 years male & have been suffering from CSVD for the past one year.Took MRI Brain which shows Brain Shrinkage. With tremors & Ulnar Neuropathy problems,for the past one year I am not able to walk due to my left leg swelling. Blood thinner helped me. Now for the past few days I am dashing towards any objects i,e, wall, floor, cot etc. and got hurted. Tiredness and lack of concentration is there. Not able to perform work perfectly. Kindly reply whether I am having Huntington disease.

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Hello @venki

I am sorry to hear of the difficult problems you are experiencing. At Mayo Connect, we are not medical professionals, only patients like yourself. Therefore, it is important for you to report these new symptoms to your doctor. Your doctor is best able to determine what your symptoms indicate.

Please keep posting and let us know how you are doing.

Teresa

Liked by chinasmom

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In India Doctors don’t give imporatnce to diseases like Huntington Disease, Small Vessel Disease Brain shrinkage & other nerve related issues. I have consulted neurologists who prescribe medicines in assumption only. Im very sorry to say this as per my experience. Research on Brain issues should be undertaken. Then only we will be able to get treatement.

Liked by chinasmom

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I can say, there is help.
I have a dear friend in town here.
Her Huntingtons is inherited.
She is active, she walks,and,
has a very upbeat personality.
She is so happy for herself.
Her doctor had her go to
Physical Therapy. She learned
So many things that she can do
Better.
I hope your brother has good
Medical. The help is out there.
Blessings

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@success101

I can say, there is help.
I have a dear friend in town here.
Her Huntingtons is inherited.
She is active, she walks,and,
has a very upbeat personality.
She is so happy for herself.
Her doctor had her go to
Physical Therapy. She learned
So many things that she can do
Better.
I hope your brother has good
Medical. The help is out there.
Blessings

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@success101 Yes, there is help. And more is coming on line every day for all autoimmune disease that begin with protein mutations. Pfizer and many other companies are racing to develop more meds. Some have already passed FDA approval. Talk to places like Mayo, Mass General, Stanford, etc.

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@success101

I can say, there is help.
I have a dear friend in town here.
Her Huntingtons is inherited.
She is active, she walks,and,
has a very upbeat personality.
She is so happy for herself.
Her doctor had her go to
Physical Therapy. She learned
So many things that she can do
Better.
I hope your brother has good
Medical. The help is out there.
Blessings

Jump to this post

Hello @success101

Thanks for the encouraging story about your friend. Physical therapy is so helpful for so many things.

Teresa

Liked by chinasmom

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@kanaazpereira

Thank you, @chinasmom, for the wonderful words of support and for sharing about your mother; I’m certain @sisterlove will appreciate it too.

I found some groundbreaking news about a new drug which might interest you. The drug, Ionis-HTTRx, shows promising results to fight Huntington’s disease. You can read the details here: http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html

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@hopeful33250 , @dolan, @oldkarl , and others on the Huntingtons and brain disorder group, I live near St. Louis, missouri. Where are you finding good care? What hospital or doctors are you getting care from and in what location? I am reading your post and researching recommended resources. You guys are so helpful to me and to others. I am so thankful to have others tell their experiences that way you don’t feel so alone. If i cant reply it is not because you are not being heard. I will be listening!
Becky

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@kanaazpereira

Thank you, @chinasmom, for the wonderful words of support and for sharing about your mother; I’m certain @sisterlove will appreciate it too.

I found some groundbreaking news about a new drug which might interest you. The drug, Ionis-HTTRx, shows promising results to fight Huntington’s disease. You can read the details here: http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html

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Hello @chinasmom

I live in SE Michigan and do not have HD myself, however, I went on the Huntington’s Disease Society of America (HDSA) website and they list “Centers of Excellence.” I see that there is one in MO, Washington School of Medicine, as well as in Illinois at Northwestern Univ. I don’t know how far these are from where you live, however, take a look at the list of Centers. Here is the link, http://hdsa.org/about-hdsa/centers-of-excellence/

As you can, please post and let us know how you are doing.

Teresa

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@kanaazpereira

Thank you, @chinasmom, for the wonderful words of support and for sharing about your mother; I’m certain @sisterlove will appreciate it too.

I found some groundbreaking news about a new drug which might interest you. The drug, Ionis-HTTRx, shows promising results to fight Huntington’s disease. You can read the details here: http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html

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@chinasmom Hi, Becky. You ask about getting good care. I wish I could be more help to you. Actually, I also wish I knew where I cold get good care. I have received the most important care not from the clinics and hospitals, but from the businesses who develop the meds for the stuff I have, places like Pfizer, etc. Another great place is the videos and books done by various outfits such as Mayo, Alnylam, and the foundations for the diseases. Your best bet may be a local doctor who cares enough about you to pick up the phone and dial the bigshot clinics to find out what to do. At this point I am not at all convinced that actually going to the top clinics is worth the time and money except in very specific, selected cases. I spent four months in AZ trying to get a diagnosis, and all I got was my thyroid removed, which just made things a little worse. Well, it did help me spend 4 months with my daughter and granddaughter.

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I have a niece who is 37 years old,, we believe she has hunnington . She refuses to get tested, has been referred by family Dr. It has been diagnosed in fathers family….. She alsoo has an 8 yr. old son whose care has fallen on Grand mother. Any suggestions would be helpful

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@concernedaunt23

I have a niece who is 37 years old,, we believe she has hunnington . She refuses to get tested, has been referred by family Dr. It has been diagnosed in fathers family….. She alsoo has an 8 yr. old son whose care has fallen on Grand mother. Any suggestions would be helpful

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Hi, @concernedaunt23 – welcome to Mayo Clinic Connect, and I apologize for the delay in responding. I've merged your post with this discussion on Huntington's disease so that you could meet other members like @chinasmom @success101 @venki @sisterlove @davidwhitehurstbrown who have talked about this disease. I'm hopeful they may have some insights about your niece you believe have Huntington's and refuses to get tested. @suzie2017 and @hopeful33250 may also have some thoughts.

I thought you may find this Mayo Clinic information on Huntington's disease helpful: https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117.

How is your niece doing now, @concernedaunt23?

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@concernedaunt23

I have a niece who is 37 years old,, we believe she has hunnington . She refuses to get tested, has been referred by family Dr. It has been diagnosed in fathers family….. She alsoo has an 8 yr. old son whose care has fallen on Grand mother. Any suggestions would be helpful

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Do either one of your neice’s parents have HD? You indicated that it has been diagnosed in the father’s family. Does the father have HD or has he been diagnosed with HD? My understanding is that an individual has to inherit the gene from one of their parents. It is a shame that she won’t be tested? If she does have it, it is possible that her kids could inherit the gene also. It is a terrible debilitating disease. I currently have a sister in law, neice and nephew with the disease. Fortunately, my husband tested negative.

Liked by Lisa Lucier

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