Hi folks! I've been silently taking advantage of your very helpful information for several months now....thank you. 
My 69 year old brother in law has been diagnosed in the past 6 months with cerebellar atrophy/ataxia. Its been quite a ride trying to determine a cause...if that even matters.
All else being excluded, he is a Vietnam vet who has been exposed to Agent Orange and we are leaning in that direction.
Any thoughts on how to proceed? What to expect? We are clueless.
Thanks,
David
Hi, David! Sorry about your brother-in-law. What I am curious to know is if he was diagnosed by a Neurologist, and what tests were used to help diagnose him. I think that the cause of his Ataxia could be important. For instance, my Ataxia was largely caused by my earliar heavy alcohol use, and they say that they presently have no way of treating that. But, I have read that some researchers have hopes that other types of treatments, such as stem cell, might provide some help for other types of Ataxia. As for Agent Orange, I would not at all be surprised if they would find-out that it has been involved in promoting many different disease processes. I would just suggest that you continue to investigate your brother-in-laws case as best you can, and try to fill-us-in on this site about what you learn. Best of luck!
Jim
Hi Jim, thanks so much for responding. Yes, he has been seen by 2 neurologists.....as far as specific tests, I couldn't list them at the moment but they have run out of blood tests, scans, etc. at this point so it's pretty much a diagnosis by exclusion.
You're right about exposure causing many diseases...cancer, diabetes, etc. The name of the actual poison is dioxin. While the Veterans administration considers all vets who set foot in the ground in Vietnam to have been exposed, they have their own list of accepted medical conditions. Despite the fact that lawsuits attributing dioxin as the cause of cerebellar atrophy have been won on an individual basis, the Veterans administration has not added cerebellar ataxia to their approved list.
Some research was started around 1994-95 for treatment, there has never been followup studies which I find suspicious considering the effects of dioxin exposure continue not only for vets but the children of vets AND their children. Very frustrating. Bottom line, I'm still looking for a way to help my brother-in-law.....perhaps a movement disorders clinic? We're lost.
Thank you for your interest.
David
Hey David,
I, too, am sorry about your bro. Thanks for his long-ago service. Sounds to me that you/he needs a good lawyer. You seem to say that the VA has seen this before. Maybe just the threat of bad publicity will cause them to settle. Sometimes these litigators work for free, taking a percentage of what is awarded. But make sure that the US govt or the VA does not help itself to an additional chunk. Good luck. N
Thanks for writing, beta. Know what? You're absolutely right about a lawyer. Its just a matter of when to involve one. Apparently, we have to apply for veteran's benefits and be turned down in order to appeal...crazy, I know. Its at this point we will need an attorney. I actually found court files on the internet of a successful case for ataxia caused by Agent Orange. I've been in touch with that particular lawyer and she's on standby when the time is right.
To be very honest with you, the VA process is so long and bureaucratic, my main concern is to initiate whatever treatment is appropriate and available as soon as possible. I'm afraid if we wait for the VA's assistance, too much time will have been wasted.
Thanks again,
David
Sorry.....neta
Well these 2 projects, getting him in shape and suing the VA, are not mutually exclusive. Aside from that, perhaps the VA has a compassionate clause for vets who have debilitating diseases to expedite things. I know Social Security does. Money does become a big factor. Good luck N
Neta, mind a question or two? What is your experience, both with ataxia and it's management?
Thankyou,
David
Dear David,
Sorry for the delay in getting back to you. I will get back to you later.I have to go to the gym now.
No worries.
Dear David,
My saga
My ataxia reared its head in 2007-8 or 9. It was so mild in those years that I paid no attention to it. It was a feeling of a pendulum swinging within me.... very slowly.
But I was plagued suddenly by long attacks of hives-- which I thought came from "new medications" given to me. These 2 meds I believe were :"zovirax" for the treatment of shingles and dye for a CT.
In 2010, afetr the swiging became more pronounced I went to a neurologist for the first time and she mentioned that I had sensory ataxia, whatever that is...
Later, during 2010, she suggested I do a head CT and I developed a long hive attack which was attributed to an allergic reaction to the dye in the CT. But the neuro said there was no connection, between my allergies and the ataxia.
In the summer of 2011, I developed a new enormous hive attack as a result (I thought) of taking a relatively harmless med, and went to a NYC allergist. He said my reaction wasnt normal and that I had an auto-immune disorder. After trying everything, he gave me several doses of presidone which is quite toxic.
I returned to ISRAEL (where I live) and saw an allergist. Now I had 2 weird things. The allergist in Israel, a French dr., did think the allergy problem and the ataxia were related and she recommended that I see a specialist in Tel Aviv. I did and he was a famous immunologist
As I sat with him, he called in a neurologist and an epidemiologist. The neuro was also the head of his dept. in a large government hospital and he advised me to check into the hospital for some tests. Everything on Earth was done. Finally, they determined that I had auto-immune induced cerebellar ataxia because I had weird antibodies. There is some research that shows that weird antibodies can cause CA and its treatable. It means that the body is creating these antibodies because one might have cancer or who knows what. So the treatment plan is to mask these antibodies with "plasmapherisus" (blood cleaning) or/and monthly treatments of IVIG. This is donated plasma given via IV and is made in the USA. I had the former once (it did not help) and the latter for 4- years.
In the meantime,I don't have cancer or hive attacks but the CA is still w me ever stronger. My neuro says it has inhibited deterioration and I should continue.I am not so sure. (I consulted two American neuros and both agreed with him --meaning my treatment in Israel )
I also go to a private gym where I do some stretching and exercise with a personal trainer and have lately taken up with an Aussie PT who claims my brain can learn to change and adapt . My neuro doesn't agree.
This condition can be quite debilitating. It's impt to determine why the person has it; sometimes the cause is unknown. It makes everything complicated, PT's and neuros have different approaches which doesn't help. Hope this helped somewhat. N
Dear Neta,
Thank you SO much for taking the time to respond. Your experience sounds extremely complicated and I greatly admire your dogged persistence, hope and motivation. You have shed light on something I would have never considered. Thank you and thank you for sharing this very personal information. Its a very frustrating process, as you know, nailing down a cause. It's not very comforting to feel like I'm leading this process rather than the physicians involved.
Agent Orange is simply a guess at this point because nothing else has shown up on all the testing.
My initial focus was solely on treatment which for me, turned out to be fruitless. That's why your information is so helpful.....it's another possibility. I had pretty much given up on a cure or even a way to halt the progression. Your story makes me think again.
While we were focused on a fix, the ataxia was progressing so I quickly focused my attention to it's management. Its led us to the hope of insurance approval for inclusion in a movement disorders clinic which mainly involves physical and occupational therapy.
I have read the research too that suggests the brain can be exercised into regenerating itself. I'm afraid as well that this is a pipe dream.
Thank you so much for taking the time to respond. You have rekindled a fire.
David
Dear David,
You r welcome, welcome, welcome..I assume you r American Doesnt much matter though the Brits seem more organized. I find that the American group, NAF, is rather moribund and uncommunicative, If I had the energy,I would investigate them. For example, they never report to us the results of their funded research. I am beginning to think they r a sham. The other thing... arriving at a diagnoses is indeed a complicated thing and I find most neuros are more interested in stroke victims or folks who have brain tumors, MS, ALS or Parkinson's than these rare things. My final observation: No one knows anything and I wonder if anyone is "working" on anything..
Dear Neta,
I am from the States, true.
I completely agree with you about the effort put forth to solve this problem, particularly in the case of our government and Agent Orange. I am not a paranoid person but after all the time I've spent looking for information and help, the Veterans Administration seems intentionally slow in this regard. I don't like even admitting that...makes me sound like an angry nut; but they admit the problem exists yet offer very little assistance AND you must jump through hoops to find it. Very frustrating. Thanks for your advice and assistance.
D
I am sorry the VA is giving you such a hard time. I do know that exposure to toxicity can cause CA. Maybe get a Congressman/woman behind you. Or find some DC heavy-hitter who can help your cause. Or a local reporter can be helpful.Keep your saga short and clear. Here's the fake headline.. And good luck!
"AGENT ORANGE'" VET SAYS VA UNHELPFUL IN RARE BRAIN DISORDER
I like the way you think.
Hi David. I just had a few more thoughts about your brother-in-law which may seem obvious to you, but I thought that I should mention them anyway. It seems to me that your brother-in-laws ataxia, and mine, are somewhat similar. I believe that both alcohol and dioxin actually destroy areas of the cerebellum, so that there does not seem to be any treatments being proposed which promise to be able to replace areas of the brain which have been destroyed. The Neurologist that treated me said that we have an excess of capacity in the balance area of our brains, and that is what the toxins destroy. So, when the time comes that our cerebellums begin to experience normal shrinkage, we immediately begin to lose some balance and coordination. I guess that pretty-much everyone eventually loses some degree of balance at a certain age, probably at the point where their cerebral shrinkage has begun to exceed the amount of extra reserves that they had. So, with chemically-damaged brains, besides having no available treatment options right now, the increase in physical symptoms probably pretty-much follow a path which would be similar to the normal increase in symptoms with aging. With other types of ataxia, there seem to be much less consistent, and predictable, increases in physical symptoms. So far, my symptoms have only very slowly increased. I hope that will be the same for your brother-in-law. The kind of needless suffering that your brother-in-law is experiencing needs to be much more in the minds, and hearts, of politicians before they are so quick to involve us in wars that probably are unnecessary, and only benefit those who profit from keeping wars going. Your brother-in-law has my thoughts and prayers.
Jim
Jim
Thank you for your thoughtful reply. I hadn't thought about the similarities of both circumstances but your explanation makes logical sense to me. Its difficult to determine when these symptoms first appeared. Looking back there may have been signs that were attributed to other causes. If you don't mind, was your diagnosis made at the very start of your symptoms? In my brother in laws case, they appeared to start or worsen abruptly at first look but this may not have been the case.
Don't even get me started on the politics of Agent Orange. The more research I do, the more sickened I become. You're absolutely right about that.
Thank you for your time and concern. I wish you well.
David
David, what happened in my case was that my Cardiologist referred me to a Neurologist to be tested for Sleep Apnea because I was having trouble sleeping. During that process, I mentioned to the Neurologist that I sometimes felt dizzy. So, he tested me for most things that could cause dizziness. Through a process of elimination, he thought that I might hava Ataxia. He gave me a bunch of tests, including DNA, MRI, middle ear tests, and spinal tap. Another process of elimination caused the doctor to conclude that it was probably caused by alcohol. During this whole period, I only noticed a very gradual increase in my lack of balance. At about this time, a ladder collapsed as I was climbing it, which shattered my right knee. This worsened my balance, so I had to start using a cane. Shortly after that, I noticed that my balance appeared to be somewhat worse. I think that was at least partly due to the fact that I was paying more attention to my balance because I was afraid of breaking something else. In that same way, I think that it is possible that you brother-in-laws symptoms seemed to get worse more quickly at first partly because you were paying more attention to them. More recently, I have only noticed a very slight worsening of my symptoms over time. My Dr. seems to think that is about what he would expect. I try to stay optimistic, so I like to think that my condition probably will maintain about the same rate of progression. It is my sincere hope that your brother-in-laws condition also does not worsen very quickly. Thaky you for having so much concren about him. Take care.
Jim
Jim,
Thank you so much for sharing your personal story. Sounds like you have a very astute neurologist...aside from that our situations sound extremely familiar which actually gives me hope.
Are you familiar with a movement disorder specialist/neurologist?
Thanks for tolerating my endless questioning. This has been extremely informative.
David
David, I was not familiar with movement disorder programs. Being in Northwest Indiana, Chicago would be closest for me. Looking them up on Google, I found a lot of programs there, including at these well-known hospitals: rush.edu/.../parkinsons-dis...
ww.uchospitalsw.edu/specialties/.../parkinsons-movement-disorders
I believe that physical therapy can be helpful in decreasing the physical effects of Ataxia, but it was not an option for me because of my messed-up knee. It sure sounds like you are going to get the best possible advice for your brother-in-law. Good for you! I wish you the best of luck. If you learn anything that is particularly interesting, consider posting it on this site. I'm happy that I was able to be of some help to you. Good luck!
Jim
Thank you so much for your help and concern, Jim. I've been researching to death the past few weeks and feel like I'm still grasping at straws....not finding the answers I was hoping to find and I think you understand that better than me.
I'm sorry to hear you can't participate in physical therapy. To be honest, it sounds like a bandaid for a gaping wound but I'll keep digging and of course do the best we can.
I appreciate your research. You really didn't have to do that. Thanks so much for taking the time.
Rest assured that if I find something meaningful, I will absolutely post it.
Be well, my friend.
David
By all means keep researching. If you don't, and later-on hear about something that you might have found if you would have kept looking, you probably whould feel bad about it. Part of the reason that I have not spent more time researching about possible treatments for Ataxia has to do with the fact that I have assumed that almost any treatment out there would probably be considered to be experimental. So, they would probably be very expensive, and I doubt that any insurance policies would cover any of the cost. It seems that most places would want to evaluate the patient before they would treat them, so you would be having some, probably considerable, costs even before you would know if they could help you. But, I don't suppose that they would charge anything just to talk with you over the phone, or to mail you information about their treatment. I do think that physical therapy, again if it is affordable, or covered by insurance, might be a good way to go. The thing that I have found with having balance problems is that you constantly live with a fear of falling. That's because many people with Ataxia tend to be older, so their bones have become fairly brittle. Breaking a bone, or a hip, or a knee often means months in rehab, and maybe in a wheel chair, or a walker. During the time in rehab, you usually don't get a lot of exercise, so your muscles get weaker and you don't get much practice balancing as you walk, so your Ataxia symptoms probably will get worse. Also, during rehab, you can become more likely to fall, and maybe break something else. But, I think that you need to try to overcome those fears, and try to make your muscles stronger, and get lots of practice at retaining your best balance as you walk. Finding help to get better IS a huge task. Your brother-in-law is very fortunate to have you helping him. It's very easy to get discouraged. Just try to hang-in there, David. There's lots of medical research being done. You'll never know what tomorrow might let you find out there. And, by all means, pass anything interesting or exciting onto this site. Best of Luck, David!!
Jim
Genetic Ataxia
Experience of neurology during the coronavirus crisis. Asking for your help!
Are you as fed up as me?
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