So I first went to a neurologist when this all began, everything pointed towards MS (but the lesions are not in the normal places that MS patients) After Neuro #1 could not figure me out he tries to send me to a MS specialist, he is obviously hanging his hat on this disorder/DX of MS.
Well after failed LP and no lesions on my spine and this is on month 4, it looks like I do not have MS. My new Doc who I got rid of today for lack of knowledge of Ataxia, suggested maybe a Movement Disorder Specialist which I thought she was. Turns out she is an epilepsy specialist?
Low and behold I look up what movement disorders they deal with and Voila! Ataxia is on their list.
I will see one on April 1st. (my buddy giving me the ride threatened me if this is some prank ha ha.
Do you see a MDS or a Neuro, so far I am 0 for 2 on neuros being well versed on Ataxia?
See them all! My wife has seen 30 different doctors over 3 years. 14 of them are Neurologists. General neurologist shows you potentials. Each specialist adds info or helps eliminate options. Infectious Disease, toxic reaction, genetics, cancer, Parkinson’s, ALS, MS. You need to test and explore all paths.
Hi - Looks like you’re a mile closer - that is very frustrating not knowing. Also, it’s always helpful to have a friend with comic relief!
I have a neuro./neuro. surgeon that I now see on an annual basis for check-ups; however, “during”, I saw him on a weekly, monthly, and sometimes daily basis.
Hello Peter,
I believe, although I could be wrong, that all movement disorders doctors are neurologists. They are just specializing in movement disorders., which encompass Parkinson’s, Ataxia and many more. So, whatever movement disorders doctor you chose, he/she will be a neurologist… No way out of that one…
I found the name of a neurologist in my state ( GA) who specializes in ataxia through the National Ataxia Foundation. You could google them and call or write them an email to find one before you see another doctor who never even heard the word ataxia…the problem is that these specialists are rare and you may have to travel to see one.
I hope you get a diagnosis very soon. Good luck to you,
Take care.
I followed Dr. Tom Clouse's sit for a few years off and on and then messaged him on American Ataxia Networking to see when he woud be coming close in my area (because he travels and also has ataxia) so I could get a chance to work with him.
I was able to when he came out to SF a few months ago now and he really made a huge diffrence mentally and physically following his informaiton. Here is his link if you have some time to look things over. There is a ton of helpful information on his site that really really works! Make sure to click on the little guy in the upper feft corner to watch a video too! http://walkingwithataxia.com/INHERENT%20PROBLEMS%20AND%20ISSUES.htm
I did see a nuero who was a movement disorder specialist. He could do nothing for me. "Just watch it"
So I'm going back to my original neuro because he at least understands gluten ataxia (I'm his first patient to have it) and he's in my town so I don't have someone drive me to another town.
I'm having a EMG test in a few weeks because of some new neuropathy with a new neuro (so I could be seen sooner).
I have had both.The movement specialist diagnosed ataxia.Once I got the label I asked to be transferred to a Neurosurgeon specialising in Ataxia.I don't fit all the criteria of CA but I do fit some.I think once you have a label there is a lot of help and someone to sign all the wretched forms.My GP is also very helpful.I think he and the Neurologist work as a team.
Sadly there is not a cure for most ataxias but the label certainly helps get access to all the help.They don't think its psychosomatic when you finally get a label and diagnosis.I was only taken seriously when my MRI showed atrophy.
Up till then I was told it was stress.I dispensed with the movement specialist as I couldn't see the point of two specialists telling me the same thing.This is only my personal experience.I expect others may have a different experience.
I have had both.The movement specialist diagnosed ataxia.Once I got the label I asked to be transferred to a Neurosurgeon specialising in Ataxia.I don't fit all the criteria of CA but I do fit some.I think once you have a label there is a lot of help and someone to sign all the wretched forms.My GP is also very helpful.I think he and the Neurologist work as a team.
Sadly there is not a cure for most ataxias but the label certainly helps get access to all the help.They don't think its psychosomatic when you finally get a label and diagnosis.I was only taken seriously when my MRI showed atrophy.
Up till then I was told it was stress.I dispensed with the movement specialist as I couldn't see the point of two specialists telling me the same thing.This is only my personal experience.I expect others may have a different experience.
See them all! My wife has seen 30 different doctors over 3 years. 14 of them are Neurologists. General neurologist shows you potentials. Each specialist adds info or helps eliminate options. Infectious Disease, toxic reaction, genetics, cancer, Parkinson's, ALS, MS. You need to test and explore all paths.
As always thank you for the responses. I see now the need for patient advocacy. Dr's can be very opaque or as transparent as saran wrap...which reminds me
A guy walks into his Psychiatrists office wearing absolutely nothing but Saran Wrap, the Doctor looks at him and says "Clearly I can see you're nuts" *rim shot.
Anyway this experience is teaching me so much about life, friends, the medical BUSINESS and most of all appreciation.
I am going to be a more informed patient and NEVER BE AFRAID to say what ever I feel in a professional manner. Though I have insurance, I am currently on temp disability but these co pays add up. I e mailed the National Ataxia Foundation and they referred me to a respected LOCAL Ataxia expert who even discovered a new SCA gene. I am looking at other doctors who list that ataxia is specialty and some work for respectable establishments. Vet Vet Vet!
Then I had an idea because I always feel I leave something out on my visit. So I made a chart (that I will leave with them) listing the symptom, the date of onset then the severity and frequency of the symptom and if it ended. It is pretty cool ...look (and it goes down to today.)
The sp stands for sporadic and the <> say frequency <not often < not often at all as a plies with the other arrow, and obviously 100% means always. The three digit numbers are range of pain
Even though I still do not know my cause I somehow feel pretty good since yesterday MS was pretty much ruled out. Time to move forward. OK Doctors, you got ONE FIRST visit to impress me, this is my life and my money and time all which I value. Do you go back to the restaurant that gave you crappy service? Do you watch that horrible movie a second time? Me neither.
Don’t underestimate lyme’s. or the co-infections bartonella and Babesia. And that these infections do not show up in 40% of people who’s test results come back negative but do have them. From what I read, The body creates and over abundance of antibodies that cause an inflamatory condition by attacking parts of the body and can cause a lot of the symptoms of ataxia. My wife came back negative for Lymes but “equivocal” for Babesia and Bartonella. Which means not negative and not positive. And should retest in 14 days and keep watching. But some doctors (thank god) don’t follow insurance company mandates and treat for these infections if “equivocal” and the symptoms are present. I highly recommend watching the movie “Under Our Skins”.
My wife has had CA for 28 years, and they thought it was MS for most of that time. We saw a neurologist when she had to have a Cesarian section, and he almost immediately diagnosed CA. Unfortunately hers is not yet classified, but at least we know more.
An MRI very clearly showed the condition. Luckily that was all on the National Health in the UK, so it cost us nothing, but otherwise cost is probably a factor.
