A relative writes: “Anyone out there know anything about treatments, specialists, community for someone recently diagnosed with paraneoplastic cerebellar degeneration, especially in the Boston/New England region of the US?”
The condition’s Wikipedia page says: “It is believed to be due to an autoimmune reaction targeted against components of the central nervous system (specifically Purkinje cells and large brain stem nuclei). It is thought to be caused by an anti-neuronal antibody…”
I didn’t readily find much on my Patient Communities page, but I hope it will grow. I did find these search results on MedHelp.
Here’s what I can find:
There seems to be a couple patients keeping in touch here: http://forums.wrongdiagnosis.com/showthread.php?t=33866
This seems to be the company that does a lot of the testing for it, they have some information: http://www.athenadiagnostics.com/content/diagnostic-ed/neurology/paraneoplastic
A group of neurologists interested in paraneoplastic syndromes in Europe: http://www.pnseuronet.org/
Healthboards gets a huge amount of traffic. They are very strict about what you can post (no links, etc) but it may be worth posting a thread just to see if someone passes through who can help: http://www.healthboards.com/boards/forumdisplay.php?f=107
Dr. Hain at Northwestern seems to be interested in paraneoplastic syndromes, here is his site: http://www.tchain.com/cv/hain-t.htm (and specifically about paraneoplastic cerebellar degeneration: http://www.tchain.com/otoneurology/disorders/central/pcd.htm)
Another doctor who I would look into is Dr. Robert Darnell… he is interested in this area:
Here is his lab info: http://lab.rockefeller.edu/darnell/ Note, he also has some ongoing clinical trials for this.
I’m sorry to say that I found very little in the way of patient communities…. However, I would bet that once you get started looking at these resources, it will lead you to more information… You could also consider emailing Dr. Darnell, he may be able to point you in the right direction.
I hope this helps, please feel free to let me know if I can help more. :)
First I would like to congratulate Stacy for the thorough search.. I am afraid I have nothing for USA but may I recommend Eurordis the European Organisation of Rare Diseases (www.eurordis.org) and http://www.orpha.net the Orphan Diseases Network.
I have found this link
http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=10425&Disease_Disease_Search_diseaseGroup=Paraneoplastic-cerebellar-degeneration&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group%20of%20diseases=Paraneoplastic-neurologic-syndrome%E2%80%93Paraneoplastic-cerebellar-degeneration-&title=Paraneoplastic-neurologic-syndrome%E2%80%93Paraneoplastic-cerebellar-degeneration-&search=Disease_Search_Simple
[Original link was broken:] http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=10425&Disease_Disease_Search_diseaseGroup=Paraneoplastic-cerebellar-degeneration&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group of diseases=Paraneoplastic-neurologic-syndrome–Paraneoplastic-cerebellar-degeneration-&title=Paraneoplastic-neurologic-syndrome–Paraneoplastic-cerebellar-degeneration-&search=Disease_Search_Simple
But my suggestion is to contact them in writing by mail and ask for referrals in the USA. They are very active and well informed and connected to all kinds of research and communities all over the world.\
http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=10425&Disease_Disease_Search_diseaseGroup=Paraneoplastic-cerebellar-degeneration&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group%20of%20diseases=Paraneoplastic-neurologic-syndrome–Paraneoplastic-cerebellar-degeneration-&title=Paraneoplastic-neurologic-syndrome–Paraneoplastic-cerebellar-degeneration-&search=Disease_Search_Simple
all this is a link!
Thanks, Kathy – when I get online tonight I’ll fix it.
I’m sitting at the ISDM conference with Joanna Groves of the International Alliance of Patient Organizations, whose president we worked with last December!
Here’s a shortened version of that link: http://bit.ly/m4NBZt
Everyone, click that – what a resource this site must be! Even though this is a rare disease, the sidebar section “Resources for This Disease” lists 28 patient communities!
(Optional blog geek info: Kathi, I think the problem was that the URL had two actual spaces in it, and by definition a space ends a URL. Spaces within must be converted to the character code “%20”. I did that and it seems to work.)
I recommend Mayo Clinic and Dr Sean Pittock. He diagnosed a client of mine and prescribed an aggressive treatment that has helped immensely. Treatment is done locally. My client was misdiagnosed for two years and if it wasn’t for this treatment he would be in a nursing home. As it is now, he will not walk again but the disease has been slowed.
i have lung cancer. i have been suffering with several symptoms that r consistant with paraneoplastic syndrome. vertigo, ataxia, visual issues, dizziness, weakness in legs . an back muscles. ect who diagnoses this. .i have seen many neurologist, an i am suffering daily, i am finally seeing a oncologist tomorrow, will a pet scan , help in this an what doctor would i see. i hear it has to be a specialist who deals with this. where is there one. i am from mass. any comments please help suffering , these debilitating symptoms daily an my primary care an many drs. dont know what to do..
Karen, I can’t offer anything other than the suggestions people posted above – best of luck –
Karen my husband has been suffering for a year in a half . Have you had a spinal tap That’s how his was diagnosed. He was able to do cytoxin and immunology.. which helped him tremendously. We went to Mayo in Rochester. For second opinion.. anyway you look at it there not a lot of help out there !! Pretty frustrating !!
Hi karen,
My name is James. My mother passed away in 2002 from pcd. It is very difficult to diagnose. There is not a test that says this is what you have. Ivig is one of a few different treatments they recomend. It seemed some treatments that were tryed just brought on secondary symptoms with no effect on the condition. I can offer you this advice. This disease is so hard to diagnose and treat even the best doctors will second guess themselves. These doctors have many patients and a cursory understanding of the disease. Two months in to my moms treatment i had a better understanding of the disease than the doctors. The hospital my mom was admitted to had a medical library.I quickly exausted that material. There is not a lot known about the disease. Learn about it. I believe there is a cure out there we just have to find it. If you indeed have this disease, you have a monumental task in front of you. If you have any chance you need to fight every minute of everyday. Be an information sponge. You will need every bit. Peace
James
My Mother has been diagnosised w/paraneoplastic syndrome of the neurological type.
One Doctor told me she has a malignant tumor somewhere, but they
Don’t know where that is??? She’s receiving plasma replacement therapy
At this time… My Mom is so sick, not only from this disorder or cancer or
Whatever the hell this is, but she has C-Diff and just had
Cervical Spine surgery, & has a couple other infections!
We live just outside of Boston, Mass. The hospital she
Is presently at, I believe, are doing all they can, but
Are not specialists. Please, if anyone knows of a
Doctor or Neurologist at a Hospital in BOSTON
MASSACHUSETTS, I WOULD SINCERELY APPRECIATE
IF YOU WOULD CONTACT ME ASAP. THANK YOU!
PEACE!
Melissa, did you try Mass General? Seems like that would be the best place to start — their neuro department is huge and they have lots of subspecialists.
The National Institutes of Health has a Genetic and Rare Diseases Information Center (GARD) It considers cerebellar degeneration to be a condition within its mandate. See the brief but informative article on cerebellar degeneration on that organization’s website at: http://rarediseases.info.nih.gov/gard/6019/cerebellar-degeneration/case/22441/case-questions
Thanx, Peter! Sorry for the delay in releasing this comment – I’ve been traveling without wifi.
If I had to go through this again with someone I would go the holistic route. Has anybody tried hash oil wax or edible Cannabis? have seen it stop seizures cold in their tracks. If the patient is open minded and they have exhausted other resources it might be worth a shot. imo
Hi
My dad has tested positive for MA/TA 2 and amphiphysin.
Drs. are treating both paraneoplastic and ALS with rilutek as either is not conclusive, a very grey area.guess we at a t-junction…
As these antibodies cause symptoms of ALS I am concerned and wish for help in getting the correct treatment for dad’s paraneoplastic disorder asap.
We live in S.A and not sure cannot get info if there a neurologist with a sub speciality in PND. anyone able to assist?
Thanks
Lara
Lara,
I’ve never heard any of these terms (except ALS). Is this a new and unrelated request, or about the same disease? If it’s new I can make it a new blog post.
Let me try that again. (I know nothing about the conditions that are listed here, so at first I didn’t recognize most of your terms. Now I can see enough similarities that you seem to be talking about the same disease.)
So, are you looking for a doctor in South America, or just for information? Have you worked through the many resources that others posted?
Hi,
Yes I am…
I am looking for a Dr. in South Africa or any information.have read up allot but another piece of the puzzle may make the picture look clearer.As the condition rare I believe the way forward is to get as much info as possible as well as a Dr. with experience with this condition.
Thanks reply.
Lara
Well, I don’t have information on specific doctors – all I can offer is the resources that others have posted on this thread.
If you find more, please come back and add them here so others can read in the future.
Best wishes – Dave
I am in California and hoping to branch out to see if there is anyone that has any additional information and/or suggestions on how to deal with PCD.
Any information or feedback would be helpful. You can also leave a message for me at 949-436-0469. Thank you again!
Thank you very much.
Peace
Kamala B
Anybody to help this poor Indian whose mother is suffering from paraneoplast.She has undergpne surgery for Ca-Breast and Ca-Thyroid . Her cerebellum have degenerated to high extent. My question is how the cerebellar ataxia will be reduce or how her cerebellum will recover
God bless paraneoplasts
I don’t know if this site is still active-but hopefully so. My mom was diagnosed with Ovarian cancer a couple of years ago-she had surgery and chemo and her cancer is currently in remission. However, back in May 2015-she started having some issues with walking-within a couple of weeks the symptoms had moved up her body. It is as if she has had a stroke without actually having a stroke. She has been scanned and tested like crazy and there have been no tumors found. Doctors BELIEVE she has PCD. She is willing to travel just about anywhere in the country if anyone can offer any type of treatment other than just therapy. She has been told that most likely she will not get any better but they might be able to halt the disease. I do not accept that. I understand there may be damage and she may not walk again, but if she could get her speech back-her morale would improve 500%-which in turn can help out everything else! If anyone has any suggestions on doctors or hospitals to visit or try to visit in the states-please let me know. We live in Texas near Dallas. Thanks!