Wow! There is no way I’d let that guy do a lumbar puncture on me! This is not a great doctor and you deserve better. It was suggested early on to have a lumbar puncture for me to rule out a number of things which I refused. Now after many years they won’t do one saying it won’t give them any new info. If you’ve already had one why another? What about physical therapy? Have they referred you for this? Likely you won’t get a definitive diagnosis from anyone but if it were me I would not waste my precious time with this doctor. If you want a real exploration of what’s going on go to a researcher --they are really interested in finding out stuff and Not just doing “standard of care” exercises. Dr Perlman at the UCLA ataxia clinic is a researcher and would have tested you for Lyme disease.

Reading this makes me angry for you regarding how the doctor talked over you. I'm sure going to an Ataxia Center makes everyone fit into the Ataxia group but you have the right to go over whatever you want. You have questions and the doctor is expected to listen and answer them or find the answer to them or send you to someone which may be more able to answer. A spinal tap should rule out lyme disease and they are almost right about ALS. I know a woman which was diagnosed with ALS 20 years ago and she is still alive. This is very unusual but it does happen. When it comes to the Ataxia Center, I would think they would be more than interested in what is happening to you since they are the "go to" place. I would make a copy of your post and bring it with you to your primary care physician and ask them to refer you elsewhere.

O boy do i feel your frustration! Especially when they talk over you as you are trying to explain your life to them, it really knocks your confidence. i wish you well. As far as i know a blood test should reveal lymes?

Dear Searcher, I'm truly sorry this has happened to you! You deserve a neurologist that will listen to you, NOT talk over you! I always take a list of questions/symptoms with me to my neuro appointment, as I'm the patient and I EXPECT to be heard. Don't get me wrong, as I do my far share of listening too. But it's a give and take. I agree with Maryseas in that a neuro/researcher is the best (MY opinion), as they're interested in cause and effect. Find yourself a neuro worthy of your time who you can talk with. My best to you..., ;o)

I do not know your list of symptoms but may be a medical history would be more appropriate? When I wanted to see an ataxia expert I researched who to see (it always depends on the individual, not the institution!!!), then made sure that all of my medical records are transferred to the institution (in my case the Massachusetts General Hospital which is a teaching hospital of Harvard) and then waited to see just that one person. At first he did not want to see me because I am not referred to him by an other neurologist, but after I wrote a letter saying why I think I have Episodic Ataxia, I did get an appointment. I saw him several months later. He examined me, noted that he actually saw only one of the symptoms, but that my medical history is consistent with Episodic Ataxia. He ended up not diagnosing me only because he needs to see me during an episode, and that is impossible to trigger on command. Therefore, I know that I have it, even though I am not officially diagnosed. He is waiting for me to bring him a video recording of what happens during an episode. I do not know how to do that.

That is so reminiscent of my experiences in UK. Not particularly the 'talking over me' but not actually answering my questions. Always stating the obvious until I glaze over. Tests, tests and more tests for which there is no benefit.

The trouble is, one cant be sure that there isnt some underlying cause that could be treated if a diagnosis were found.

I think the best course of action is to eat healthily, exercise as much as possible and do whatever it takes to make yourself happy.


I love my doctor (neurologist with a specialty in cerebellum ataxia) at Mass General. He listens to all my new symptoms and we do a lot by email. I know I am lucky. So you may want to try another doctor until you find one you have a good rapport with. Ataxia is too serious to give up!

Confidence in Neurologists seems to be the luck of the draw.

I thought my brush with chemotherapy would be of interest to Neurologists
at my local Accredited Ataxia Centre, since nobody with SCA had had this
particular treatment (I volunteer at the centre). I couldn’t have been more

Despite needing the antidote Savene, and being left with a severe burn on
my arm, a geneticist at the centre only remarked ’ watch out for streaks going
up your arm’.

I’m disillusioned. xB

This is good to know. I have been trying to find a way to go to an ataxia clinic. There are none near me. Now, I may not try so hard!

I can relate to all of the above - well, except to Debra who has a doctor who actually listens. Has anyone tried a functional food doctor or a naturopath? I haven't yet but it is next on my list.

I used a Functional Neurologist last year He was great and expensive. I am Canadian and we do not pay for medical care but I had to pay the functional Dr. he was worth every penny my head no longer shakes my slurred speech has been corrected he put me on a Gluten Free diet Paelo and he did allot of blood work no other Dr did. I would still go but he is an hr outside of Toronto and I do not have a way to get there. I was worth it, now I go to physiotherapy..........

Maria -

First - get a new neurologist!!!!! You and your doctor should be partners. If a doctor has to Google symptoms (you can do that!) I would question whether he really knows anything about what might be wrong. Your doctor should be willing to go over the symptoms with you (this can help lead to diagnosis). YOU ARE PAYING FOR HIS TIME.

It has been my experience that when it comes to ataxia, doctors are only giving you their best guess when it comes to treatment. Depending on what type of ataxia you have will depend in if their is any type of treatment. The "experts" on ataxia don't seem to be any different than a neurologist.

From talking to people on here the only things that seem to help are exercise and in some types, diet.

Why do you need a lumbar puncture? It sounds like you don't have a diagnosis. You may want to go back to your family doctor for further assessment and follow-up. If you don't have a definite diagnosis a family doctor looks at your whole body where a specialist doesn't.


It always depends on the individual physician, not the institution. When institutions are rated, like by the US News And World Report, they are trying to average all kinds of things to come up with a rating, but ratings mean nothing. That is because no one doctor, just as no one patient, is average. They are all individuals and you have to try as often as it takes to find the right doctor for you. Try and try again until you succeed.

Jodie said:

This is good to know. I have been trying to find a way to go to an ataxia clinic. There are none near me. Now, I may not try so hard!


I just happen to have the same doctor as Debra, I believe, and say it again: There are many good doctors around. Some times it just takes a while to find one.

JJ said:

I can relate to all of the above - well, except to Debra who has a doctor who actually listens. Has anyone tried a functional food doctor or a naturopath? I haven't yet but it is next on my list.

I have had similar treatments. But not as bad. Avoiding answering my questions is primary. He certainly didn't want to go for the dna genome. I had to stat my readiness to pay the $1,000 fee. In the end, I did have a gene mutation,(sil1), but not one currently recognised for sca numbers. He has now admited that he cannot further advise me. That was fair. So, I am using this, and other web sites for information. I am OK, better than most. Johns hopkins called me a mci (mild cognitive impairment) OK. I'll accept that until further notice. Here is a questionable sequence: My primary first noticed my ataxia several years ago, and sent me to neuro 1. Tests were done including an mri. He reported me normal with a balance problem. went to therapy for that. not much in improvment. Later, I requested my primary for another neuro. Enter neuro 2. He says I have perifial neurophy. We argue. I got a copy of all my records. There he says that I have atrophy in the cerebellum. If so the problem involves perifial nerves PLUS central (i.e. brain) nerves. That would contradict his earlier diagnosis. I argue for and got a second mri. Put them side by side, and there is little, if any, difference! The conclusion: call it what you want. Nobody has a proved valid treatment. I do accept that. I advise others to get a copy of all entries in your records. They are required (in U.S.) to give them to you. You may find some interesting stuff.

Searcher said:

Wow Silkybill

I am sort or relieved to hear from some one else that has been through the same thing , ( not that thats a good thing ) I am now on Neuro # 5 , I have been told by more than several docs , " I just cant help you any longer " , that list includes My GP , Neurosurgeon , regular Neurologists .

I am sure its partly ( or more ) due to my non willingness to accept the "standard of care " . They all start off being 100% sure they have identified my problem and can cure it , they all do the same repetitive tests , CDC blood , MRIs, EMGs , etc . burn up 6 months time and then just tell me to go away . I understand if they just dont know , I get it , medical practice is more of a dart game than anything else , sometimes you hit a bulls eye , sometimes the wall !

And getting medical records , is like pulling teeth . I was charged $112 by my former GP for a 4 page "summary " of my time with him . The reason for the charge was clerical time to gather all my records . The girl at the desk had to open my file n the computer and press print , a very strenuous and time consuming task , all 30 seconds of it !

So far he was the only one to charge , but sometimes it takes months to get records from other docs .

Long story short , after surgery , many tests and many docs , the best answer i can get is , " I dont have a clue " hench my handle The Searcher .

Try searching "mild cognitive impairment" (mci). I like the entries there more to my situation. I don't have pain or severly limited movement. (there is also a mention that there may be some recovery using early onset alzhiemer meds.) So I am now saying that I have mild cognitive impairment with ataxia. -Silky

Hello Searcher, I'm Becky, My screen name is MooseHill, because that's where I live in Oxford, CT. I read this post with great interest, because I'm in the process of being referred by my former neurologist to the Yale Clinic. Unlike you, I was expecting something stellar or at least better. Like you, I'm looking into Chronic Lyme's. I hoped that could be something I could explore at Yale, but sounds like I'll have to get a doctor on the side. Thanks for the review.


By coincidence, while I was reading your post, Yale called and I have an appt. on Jan 2. I appreciate your feedback, and understand your frustration, after having already been through my first neurologist to no avail. I have hope this visit might produce results, but don't want to be unrealistic about it. The difference between my former neuro and Yale, so far, seems to be that that Yale offers the lumbar tap and botox. My former Dr. declined to offer the lumbar tap for a " condition for which there is no treatment."

I've never had a lumbar tap before, so I'm inclined to have it. If I read your previous posts correctly, you've had several that showed nothing? No idea if Connecticare will cover it, and no idea what they're looking for. Did they tell you? The botox angle baffles me too. Haven't turned up much internet info on botox to treat ataxia, but will continue to search.

I'll PM you for the LLMD, thanks. I do live in the woods here on Moose Hill, garden, have dogs, and have pulled out at least 3 imbedded ticks. I immediately got antibiotics after, and never had an active case of Lyme's, so maybe the idea that it's Chronic Lyme's is a false lead. From what I've read, doctors are deeply divided on the issue.

I had my appt at Yale today, saw Dr. Salardini. He was very nice, listened to my symptoms and questions, but didn't appear to have read the records from my referring neuro. He read them while we talked. Also, although there were reports from the 2 MRI's I've had done, he asked me to get discs of the actual MRI's as there are often mistakes in the readings. That surprised me. I thought they'd be included in my records, and he'd just be able to pull them up on his computer screen. No, I have to go back to the place where I had them done, ask for them, and bring them in.

He seems to think I don't have ataxia but more a neuromuscular problem. I'm scheduled to go back for nerve conduction testing, and he gave me some bloodwork to have done. Then a followup appointment with him. I asked about Lyme's, and he said let's pursue the neuromuscular and blood testing first and another look at the MRIs. He wants to do imaging of the spine too, Then, he'd consider doing a lumbar punch to look for Lyme's. So, first neuro says ataxia, the second thinks my mobility issues might be due to something else. I'm confused but hopeful.