Hi Lorraine. My CAG is 36.... Mikeby mikee - Huntington's Disease Support Center
I have been told I may have a slow progression due to my cag, only God knows. I can't get it out of my head what would slow progression be. Does it mean the 10-20 year life span would be extended? Could it go longer before I progress? Will psychiactric problems slowly creep in? Don't want to let my guard down. Mikeby mikee - Huntington's Disease Support Center
Thanks mrspatwolf. So many times there are post that are important to one, doesn't apply to another, etc,etc...I'd like to see us pep up (not that everyone isn't great already). I'm going to try to do better (my SIL got on and was interested, wish my wifer would log on), she's a social worker and could perhaps steer someone in the right direction. I wanted to ask for a couple of reasons, I woby mikee - Huntington's Disease Support Center
Thanks for the input. It's important to know for me. My best information has come from members of this forum (big thanks). Lots of things will increase it. Laying down is the only real relief. I practically dropped with severe vertigo, nausea, confusion, imbalance. Everyone thought it was Meniere's Disease and BPPV. Bewildered and didn't know what to do. I kept going until I had enought test.by mikee - Huntington's Disease Support Center
Glad everyone was able to help. Yes, I am very lucky. I've been on cpap since earl 40's. It doses make a difference as long as you use it. My wife couldn't sleep because I stopped breathing so often. I would probably have the same worries too, feel guilt. Maybe your were spared so you can be their voice. Who knows. I find myself doubting my diagnosis at times. Retested just to make sure. Sby mikee - Huntington's Disease Support Center
That's funny Marsha (about the Wi). My wonderful wife got a zero turn mower today and I got her radio/noise reducing headphones. I've had them on tonight and danced (feet planted) for a minute. It was sure 'nuf fun. She even commented. Mikeby mikee - Huntington's Disease Support Center
Yes. Hot summer months are really bad as well as everything in between. Most of the issues I'm talking about are increses in vertigo, balance, nausea, cognition. We went from mid 80's to upper 60's overnight andI my problems seemed to get worse today. Four days ago I felt human for about a day (glad to have it). I didn't think I had Chorea until tonight when I watched a video from a pharmacutiby mikee - Huntington's Disease Support Center
Yep. Exactly. I actually started with ocular migranes after my head trauma. Then saw apparitions (not the psychotic type). In six months fell ill with severe vertigo out of nowhere. Very sick. This continued and other things piled on. Way of life now. Wish folks could see some of the stuff in our heads....... I too am in early stages. I just wish I could stop it right here. I could live with iby mikee - Huntington's Disease Support Center
Hello. I'm still full of questions. I am still wondering if I have a vestibular issue (from head trauma) in addition to HD because I don't know if all of my symptoms can be traced to HD. Does anyone know if barometric changes/weather changes influence HD symptoms. I know It may sound strange, but I need to cover all bases before my next Nero visit. With vestibular it does have an impact.by mikee - Huntington's Disease Support Center
Thank you Marsha for this post. I'm not sure where I stood on stem cell research unitl I became pHD. Now, It's like take them. I became part of a study and have not looked back. Thank you for keeping us updated. Mikeby mikee - Huntington's Disease Support Center
Can we break this down a bit. From my correspondence with Will and Marsha I understand the basics of BDNF. As far as a brain stent, I have one already. Maybe that's a good thing???by mikee - Huntington's Disease Support Center
Smiley I don't know if this will help but some medications can causing coughing. Mine comes and goes but is sometime worse at night. One of the Mayo Dr's checked into it by first looking at my meds. This was after a number said it couldn't be the meds. It looks like it is my blood pressure medicine. It may be worth a look. You may have to google the names. I was given a new scrip but haven't chanby mikee - Huntington's Disease Support Center
Thanks. I picked up some of Will's concentrate yesterday. I will look into the book. I think one of sister's may have that book. Mikeby mikee - Huntington's Disease Support Center
Nikr don't be so hard on yourself. I don't remember and haven't looked at previous post but it could be any number of things. I don't know your age or family history but we do all have some strange moments. Are you being tested? Do you have a family history? Mikeby mikee - Huntington's Disease Support Center
Since I became sick I have experiences a tremendous (daily) bouts of vertigo than can be debilitating or at least restrictive. This never leaves me. My Neuro determined that vertigo is also associated with HD. Anyone else have any experience with vertigo, dizziness, balance issues? Mikeby mikee - Huntington's Disease Support Center
Kat, keep planning your life, look to the future and expect it to be there. Someday it may be different and you change and adapt. It would be tough at your age. I have two sons, one is your age and it prays on his mind more than he lets on. I believe someone at your age and not having symptoms should protect your privacy. Unfortunately it can and will be used against you. Big Insurance companiby mikee - Huntington's Disease Support Center
Sorry to hear about the results. That's what brings us here. Check in often. Have a question, ask. I have found lots of good advice here. Mikeby mikee - Huntington's Disease Support Center
Sorry to hear about your troubles. Fatigue was a recent post (I think), try a search. I have a tremendous amount of fatigue. Not sure what to do for it but if you aren't able to be active (as many of us) I would think it would be a contributing factor (sort of like the dog chasing it's tail). Others have more experience than I do but yes, fatigue is daily plague. Mikeby mikee - Huntington's Disease Support Center
Maybe you need to have some other test. Who's to say you don't have another illness. With the symptoms you described I would certainly want an answer. I was misdiagnosed for almost two years. I kept looking for specialist knowing they were not looking at the whole person. Finally i hit the jackpot and found Dr's who did not make assumptions. It was actually a vestibular therapist who recognized nby mikee - Huntington's Disease Support Center
Nortwest Alabama. Alabama is making a lot of changes in their system. Very troubeling. Closing lots of state facilities. More danger for the staff on a local level.by mikee - Huntington's Disease Support Center
Thanks for the clarification. Makes sence. I had to go on SSD due to cognitive, motor, movement etc. Thank God I have not experienced the psychological symptoms. Good for Ken. Glad he has the get up and go to take that step. I wish him all the best and the rest of the family. My wife is a social worker working with seriuosly mentally ill. It's stressfull but rewarding for her. Sounds like Kenby mikee - Huntington's Disease Support Center
I was was out this morning and saw a lady and her husband walking arm in arm. She obiviously had difficulty walking, stomping gait, side to side movement. I wanted to follow them back in the store and ask about her but I didn't. I still wish I had. Her movements, although more exagerrated, were so much like mine.Should I have talked to them? Mikeby mikee - Huntington's Disease Support Center
Klivin what is pre-motor, curious. Mikeby mikee - Huntington's Disease Support Center
I want to take a minute to thank Marsha for her unrelenting work to help those of us dealing with HD. She certainly doesn't have to do so. I hope no one finds this inappropriate but she and others (All of you) do great things for HD. Finding someone to talk to, confide in, rely on is a special thing and all of you are special people. I'm off my soap box now........ Mikeby mikee - Huntington's Disease Support Center
Hang in there. You are doing the right thing. I became symptomatic before knowing why. Still able to drive locally. I do know that sometime I get to intersections and for a brief period forget why I went that way. It comes back. I am cautious. Keep your eyes on him discretly and be aware of how he may react. Tough one but his family. You said your Dad passed away a few years after diagnosis.by mikee - Huntington's Disease Support Center
Kelly what about elevators. I feel like I'm at space camp. It's actually quite funny to see people react espcially if I can't lean in the corner. Do you ever have problems with the coordination of the notes and strings? Do loud noises increase your unsteady feeling? I tried a posturography test about 14 months ago and couldn't get a base reading. Fortunately we were able to at Mayo the Dr.by mikee - Huntington's Disease Support Center
Great. Marsha I think I had the two confused (go figure). I was referring to supplements although drops of some sort were recommended and the drops may be more in line with Homeopathic. It's the drops I( ok I'm looking for the ' and found it) I'm not sure about. I have not started this except a little juicing and b vitamins. Where can I find out more about supplements shown to help pHD's. I haveby mikee - Huntington's Disease Support Center
You are exactly right. This happens a lot. Initially all diagnosis and treatment was for Menieres, Bppv, PV, impalance/ataxia, nausea, hearing issues, Superior Canal Dehisence. It seemed to have a relationship to my head trauma. I knew they were not hitting the nail on the head and my vestibular therapist noticed neurological problems (thank God for him). This led me to Mayo and my diagnosis.by mikee - Huntington's Disease Support Center
Thanks for the replies. I don't understand what you are referring to Marsha. Maybe Homeopathic was the wrong terminology. Are you referring to the drops they usually recommend? I was speaking more in terms of the supplements. It was recommended I take juice, take B12, D3, Magnesium Oxide, ubiqunol, coconut butter. There's some other stuff I can't read but one is the detox drops. The premise aby mikee - Huntington's Disease Support Center