I’ve read about a number of specialized centres to help ataxia patients that include physio, swallowing, speech, counselling, making the home safer etc.-3 in the UK, maybe more in the States and Australia since they seem to have lots of support groups. There’s no one coordinating my husband’s care and he’s very ill. He saw a regular Neuro, who referred him to a genetic neurologist, who determined his ataxia is not genetic, and said there’s nothing else she can do for him although if we want we can come in again in a year. We have a caring GP who doesn’t know much about ataxia and doesn’t see any advantage in being seen by the reg. Neuro again when the specialized one can’t help. In addition to the ataxia which has progressed very quickly since he was diagnosed, he has diabetes, low appetite except for sweets at times, marked weight loss, partial deafness (which he had before), and psoriatic arthritis. I think he’s slurring his speech because I always have to ask him to repeat. His cognition may be affected tho it’s hard to be sure; I only know there are a lot of things he doesn’t understand. He suffers debilitating pain almost all the time in spite of Tylenol 3, cannabi$$$ and morphine. Most of the time he doesn’t feel well enough to go out and spends his time stretched out in the lazy boy or the bed, often moaning and crying out in pain. We have a walker and a motorized scooter, seldom used. Anyway the original question about specialized care: I’ve heard of places like Johns Hopkins and the Mayo clinic where you go in and they check you top to bottom using specialists where needed and (I imagine) sending you out with A Plan. Not that I think we could afford it, but if anyone has any comments on any part of this I would be MOST grateful. Thank you all.
It can be frustrating trying to get any medical treatment, People with bradykinesia, distonia, tremors may not be getting treatment that may help because of no diagnosis. I tried to get a doc to tryL-Dopa on me and got an E-mail back saying L- Dopa is for parkinson and you dont have parkinsons. How in hell do these doctors trouble shoot diseases if they dont know how to trace problems that are not staring them in the face.
Very frustrating. I take it your condition(s) share some symptoms with Parkinson’s, and we know treatment is more advanced for Parkinson’s. I’m surprised this cowardly doctor wasn’t willing to try it, or refer you to someone more familiar with the treatment, or at least talk to you face to face. They’re all brain diseases. I have had clinical depression for most of my life, sometimes much worse than others. I’ve tried a couple of different antipsychotic drugs after thorough discussions with the doctors, because it sometimes works (it didn’t). I don’t see why a dr. wouldn’t be willing to work with you on that, closely monitoring your progress. I hope you find an open minded doctor and can make some real progress.
I had my doctor send my med records sent to a pot doc so I could be legal.I think now it was a bad mistake. Since then it seems I cannot get any meds prescribed. that may be opiods except twice I was given vicadin but no on refills. Im 80 yrs old and if I become addicted to something so what. They think Im going to have rob someone for drugs i guess. The meds they want to give everyone is a bunch of junk I believe with large profit margins. In the states I think they are trying to stop all opoids and ritalin type drugs. The illegal market can get these drugs but not the sick.I read an artcle the other day a college student was asking questions of a doctor on ritalin that she needs for her studying for tests.Theres enough for college but none around for the needy.
I wish I understood the “system” that’s limiting you better so I could offer some useful advice! Since I don’t I can only offer you my sympathy. Could a more enlightened doctor help you start afresh? Many dr’s are notorious for undersubscribing pain meds. I wonder if it would help if you discussed it logically (that would be on your side) the absurdity of this unexamined stance (with the new guy or the old). “I’m sure they warned you in med school…what’s the worst that could happen…have you ever suffered from intractable pain…are you concerned I’d be selling it on the street…and doesn’t it make sense to treat the symptoms first and worry about addictions later…?” On the other hand if the doc is worried abt censure from the governing body, or a malpractice suit from you, maybe you 2 could problem solve on that. Good luck.
I was assuming you were in the US but maybe not. We didn’t go thro the federal hoops, dr just had us sign off that we wouldn’t come back on him and we got referred to a nonprofit dispensary. No one else got any medical records.
I am in the states and real glad that we are able to be legal. It can be frustrating when you grow your meds and someone is afraid of the law and pull up everything so we dont lose our home.This is the only med I use for pain and sleep and I have been for over sixty yrs.I am in california and have some little problems here but I am happy now that I am legal.
Hi Mish .... another canuck here north of 49 in B.C. My first visit to the Neuro
3 years ago I was on a cane and he diagnosed the Ataxia symptoms and he
more or less said "live with it there is no cure" last week my second visit, I am
in a wheelchair now and it was obvious he was more interested in the hockey
than discussing ways to alleviate the pain and mitigate the many problems of
Ataxia. And like you my GP is caring but limited with treating the disease.
He has referred me to speech therapists, swallowing therapists and home
care nursing to help washing and dressing me. I am desperate to relieve
my pain also and maybe cannabis will help. if you find a magic pill that gives relief
remember to share the info thanks kindly jack
Where do you live Jack? Just wondering whom you’ve seen. What a beastly disease. 3 years and here you are. There’s lots of info on the site about different symptoms and diff treatments but not everyone talks about pain. Do you have myoclonus too? (My husband does.) his legs jerk uncontrollably and very painfully. But he has arthritis too - I guess it doesn’t matter what’s causing which pain but I wish I knew. BTW I hope the idiot doctor didn’t put you off the Canucks. We can come back! I know we can!
Diabetes and soriatic arthritis are both autoimmune. I would consider finding more info/ doctors who could treat that. That’s inflammation in his system and I wonder if they can get that down if he’d feel better. I say that cause I have Crohns which is autoimmune. When in a flare up my whole body is inflamed.
We' tried Mayo clinic for our daughter was 3 with complex issues. While they didn't come up with anything, they did extensive testing to rule out the simplist and the ones that might be treatable. I think you need that kind of testing instead of guessing, so I would recommend it whether it's there or at other institutions which specialize in ataxia, complex symptoms.
We're still in that search 10 years later and are now in the genetic testing stage. Hope you get to the bottom of it!
Have you tried the BC Ataxia Society? http://bcataxia.squarespace.com/storage/docs/BCASBROCHURE.pdf
Hope this helps. Best wishes!
The blog has been removed but there is an email for contact . Hope it works!
Try this one: http://www.cmdg.org/AcrossCanada/acrosscanada.htm
I know they treat Parkinson’s, but in the column area of interest, they list Myoclonus. Who knows this could help…
Where do you live Jack? Just wondering whom you've seen. What a beastly disease. 3 years and here you are. There's lots of info on the site about different symptoms and diff treatments but not everyone talks about pain. Do you have myoclonus too? (My husband does.) his legs jerk uncontrollably and very painfully. But he has arthritis too - I guess it doesn't matter what's causing which pain but I wish I knew. BTW I hope the idiot doctor didn't put you off the Canucks. We can come back! I know we can!
The blog has been removed but there is an email for contact . Hope it works!
Dear Cicina, Thank you so much for that excellent lead. You’re right, they mention myoclonus and movement disorders in general, and they have staff so hopefully they do more than just diagnose. Interestingly (or shockingly) that clinic is in the same hospital, maybe the same wing as the genetic neurologist who diagnosed him and said there was nothing more she could do. I feel more hopeful and also warmed by your kindness in doing that research. Good health to you and best wishes.
So glad I could be of some help, from so far. Internet can be a wonderful thing. I do hope so much something positive happens for your husband! I Know how hard it is on you, and seing some relief in his condition would be a blessing for you too!
Take good care of yourself !
My docs can’t do anything for my ataxia either. Pain isn’t part of the equation for many with ataxia, fortunately. The Diabetes and psoriatic arthritis do have treatments that are effective. I’d forget about ataxia which has no treatment and find the best treatments for the other two issues and follow the doctors instructions on these. A good endocrinologist may be your best help along with a top notch pain clinic. If your husband is on morphine and Tylenol 3 he’s likely addicted and the bad news about opioids is that they actually create their own pain. Low appetite and sweet cravings are more addiction symptoms. My son is a heroin addict and I’ve learned far more about this than I’ve ever wanted to know. The addiction over rides any other issue your husband has. Until that is dealt with nothing else can be done. It’s likely why your doctors have given up on him. A good pain clinic will know how to help your husband IF he is willing. And good treatment for the other two conditions should be part of their plan for him.
I agree this seems to be several autoimmune which is helped by LDN therapy. I would sure look at alternatives for stopping the autoimmune processes. the doctors seem unable to suggest diet changes that can bring relief from all the inflammatory pain.
Diabetes and soriatic arthritis are both autoimmune. I would consider finding more info/ doctors who could treat that. That's inflammation in his system and I wonder if they can get that down if he'd feel better. I say that cause I have Crohns which is autoimmune. When in a flare up my whole body is inflamed.