Ataxia symptoms but clean MRI

General
1

Hello dear group,
Does anyone have recurrent ataxic episodes but clean brain and spine MRI’s?
Both of my attacks have happened 2-10 weeks post flu. The first attack (2 years ago)lasted 9 months, this attack (4 months ago)has been more disabling, can’t work, drive, etc 4 months and counting.
My frustration level is rising…first neuro thought it was a post viral attack where a virus crossed the blood brain barrier. After the second time I looked for a second opinion. He said I had classic signs of SCA, but still clean MRI and normal tests. Sent me to Hopkins. Hopkins doc spent very little time with me and decided that since I had no abnormal tests that I had Conversion Disorder (mental disorder)! He scoffed at doing an I depth lymes work up and any of our other suggestions, and suggested I was doctor shopping! Two neuro’s in three years and the one sent me to him! My husband and I left speechless.
We are willing to follow up on every suggestion (including therapy, because because learning how to de stress is never a bad thing), but…

Current issues:
Full body spasms, trouble walking, vocal spasms(helped with zanaflex and baclofen)
Polyneuropathy, electic shocks, buzzing (helped by gabapentin)
Trouble swallowing pills and liquids
Blurry and double vision occasionally (partly med related, partly not)
Excessive sleepiness during the day, but only sleep 3-4 hours at night even if I make myself stay awake all day.

Where do I go from here?
I just think the “it’s anxiety, do yoga, and see a therapist” is not the correct answer, and is the easy way out for docs who are not sure.

Thank you for your wealth of information and support!

2

CIDP???

I would write down ALL of my symptoms and research those individually.

Many of us have ataxia but no diagnosis why. I am now thinking I always had it but it was triggered by minocycline and then topped off with a dose of chemo called 5FU. The perfect storm!

I stopped taking the minocycline and within a few days I stopped falling when I walked. I say falling but it was more like a gentle collapse.

I stopped gluten and most of my uncontrollable movements stopped.

You are not alone.

I know how you feel.

Trial and error. No help from my doctors ever!

3

Dear Essentioligirl, I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, symptoms 24/7) eleven years ago, although I do have atrophy of my cerebellum. I'm so sorry you are having trouble and finding a neurologist who can help you is like looking for a needle in a haystack! I agree with Phoebe who said write down all your symptoms a research them individually. Although there's no cure (for my ataxia), I see a neurologist (to be monitored) at the University of Michigan Hospital every six months and am very happy with him! I try to exercise for strength and balance each day and have done physical and aquatic therapy, which is helpful. I also try to eat as healthy/clean as possible. My best to you..., ;o)

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Hello, I'm in the same boat as you, Ataxia, clean MRIs. Had it for 4 years. 1st neuro ordered brain MRIs, blood tests, showed nothing and said I was welcome to get a second opinion. I moved on to a neuro at Yale who ordered MRIs of the cervical and lumbar spine. He said I had narrowing of the spine which impinged on the nerves, causing my gait issues and referred me to an ortho surgeon.

The ortho said the narrowing was mild and in no way causing my movement disorder. He did order an MRI of the thoracic spine which I will have tomorrow. He referred me to another neurologist at Yale, but that Dr, only sees epilepsy patients. Also, once you're seeing one doctor in a practice they don't like you to switch to another in the same practice.

So, 2 neuros, 1 ortho surgeon, brain and spine MRIs, an EMG, numerous blood tests and nothing. At least I haven't been accused of having a mental condition. I definitely wouldn't go back to that Hopkin's neuro though, he sounds awful. Maybe you could ask your 2nd neuro for another referral. I'm now researching CIDP, a small fiber neuropathy that can be present even with a clean EMG. All best to you, hang in there.

5

Unfortunately in my case the MRI and contrast CAT showed damage to the Cerebellum. Also had a spinal that indicated another clue that my immune system could be the culprit, I have a history of SLE.

I do know that any thing like pharma drugs, alcohol (more than a minute sip) causes my Ataxia symptoms to manifest exponentially. I have not had genetic testing --

6

Thank you for all of your thoughts! I have no doubt that if this is my new normal, I can accept that, but the limbo of everyone asking what is it is tough when I don’t know. My husband and I are moving in with my parents tomorrow because of lack of income with me being out of work. So a few more days of added stress then hopefully back on tract to determine the illusive cause.
I did take your advice phoebe and rose, and think I should look into hyperparathyroidism. During my first admission my parathyroid was mildly elevated and is have other other endocrine issues.
Moosehill, good luck to you as well with your mri! I wish you the best in having some test show why this is happening (although never wanting it to be devastating!)

7

Hello again :

Sorry to see you and Moose hill still have no answers , but I am not surprised .

My journey started from a car crash in 2012 , and it has been a rollercoaster ever since .

I am now on Neuro #10 , no that is not a typo . I have seen a parade of doctors , clinicians , and therapists, been seen at Yale University Neurological Center ., Yale University Movement disorder clinic . Been to 3 ENTs , 3 Physiatrists , 2 Gastro , 2 Ortho surgeons , 2 Spine surgeons , 2 LLMDs, 5 Physical Therapists , 3 OT s. I am now on my 3rd GP in 3 years , and one really weird woman who just passed her hands in the air over me , but advertised as a OT.

Had multiple MRIs of my Brain , lumbar , Thoracic and cervical spine , I have had Lung tests , EMGs , ECGs, Nerve Conductivity tests , Dozens of X rays , Heart tests , Swallow tests , 5 Lumbar Taps , Dozens of Blood tests , Lyme tests ( be very careful with this one ) . I have been tested for most of the usual suspect disorders , MS , ALS, Parkinson , etc , etc . Still NO ANSWERS .

Most new doctors repeat the same tests as the previous doctor did rather than ask for copies of those tests , even if tests were done within a few months or weeks , and ALL have no concrete answers . most dismiss me after the first round of tests or MRIs.

Symptoms are systemic , ears , eyes , swallowing , numbness , voice and breath , bladder and bowels ,yet the most devastating symptom is this dam Ataxia / Gait / Balance syndrome .

So why am I telling you all this ? ......Well, most doctors even the so called "specialists" dont understand or have much experience with Ataxia , I was on my 3rd or 4th Neuro , and had already had spine surgery before I heard the word Ataxia , and even then it was not from a doctor that I learned about what I have it was a PT that asked me how long I have been suffering from it .....Go figure ! , When I asked the Neuro who was treating me for my Gait disorder about Ataxia I got a blank stare and a "I will research that and get back to you " , I have yet to hear from her to this day 3 years later .....

IMHO , I would print a list of your symptoms bring it with you to doctor visits , do not give it to the nurse or desk clerk , hand it directly to the doctor and ask them to go over it . If he sets it aside without looking then chances are you are in the wrong place . This is experience talking from many wasted months of waiting for phone calls and follow ups that never come .

Last month I saw yet another Neurosurgeon , he went over my MRIs , Nerve and Blood Tests , as well as gave my a good looking at , at least he admits I am beyond his skills and suggested I may want look into Johns Hopkins or Hospital for special surgery in NYC. And of course he asked if I had been tested for Lyme ( bad subject in our part of country ) , his opinion is its SCIWORA, that presents like ataxia as opposed to actual ataxia , but the symptoms are the same , very rare in adults , but most often seen as the result of spine trauma from car accidents , and it can be progressive as things wear out .

I guess what I am trying to say is just dont give up , keep researching and connecting with others who are in the same boat . You are going to HAVE to be your own advocate , I have found 90% of my doctors will NOT follow up on their own with out several phone calls or some prompting , even with test results . Most schedule a follow visit and when you go to that visit you will be at the same point as when you walked out the door last time .

If you want to chat or compare symptoms or treatments just PM me , Glad to help if I can

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essentialoilgirl said:

Thank you for all of your thoughts! I have no doubt that if this is my new normal, I can accept that, but the limbo of everyone asking what is it is tough when I don't know. My husband and I are moving in with my parents tomorrow because of lack of income with me being out of work. So a few more days of added stress then hopefully back on tract to determine the illusive cause.
I did take your advice phoebe and rose, and think I should look into hyperparathyroidism. During my first admission my parathyroid was mildly elevated and is have other other endocrine issues.
Moosehill, good luck to you as well with your mri! I wish you the best in having some test show why this is happening (although never wanting it to be devastating!)
People it seems its part of our DNA always want an answer and a specific diagnosis. I have friends who jump in to suggesting this that or the other that should help to fix me. They mean well I suppose but it is wearing.
I like my neurologist, do not see him often anymore. He from the beginning was upfront stating for right now I am not sure of an exact diagnosis. Over time as symptoms manifested more and settled in to patterns allowed ruling out conditions and finally settling on Ataxia.
Even if I had agreed to pay for genetic testing knowing if it was genetic would not change a thing I would still have Ataxia.
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Searcher, if you do go to Hopkins, I would advise against seeing dr. Dash if your MRI’s are clean, you’ll just be another “mental disorder” case, as he told me he has seen tons of us over the years.
Pgillenw, you are right, even knowing why wouldn’t change it.
It just makes my profession hard as I teach eyelash extension training which requires very fine precision work with your hands which is tough when I spasm, voice spasms, and am utterly tired all the time not to mention I fly around the country to do it, so when this happens I am without income, but not quite long enough at this point to qualify for disability, so kind of in limbo that way…
How do you deal with your professions? What professions are most adaptive to people who suffer attacks sporadically? I am willing to take on a new profession if I must!

10

Yeah I have been warned by several others to steer clear of JH , if you keep looking for answers or treatment you will inevitably run into the "its all in your head " doctors . They are half right LOL . Pay them no mind and just move on , you seem sane enough to know a dream from actual pain and symptoms as I am sure most folks do .

I have not worked in 3 years , and the way I am now there is no way I would even try .

11

I am in the same boat as you. My MRI was clean and the neurologist I went to told me that is was all in my head and now that I knew, I was cured. I finally found a neurologist who would really take the time for me and he diagnosed me with ataxia. He gave me a treatment plan and things were looking up. But for government aid I need another confirmation and the neurologists I see just look at what the first guy wrote and don’t even bother to look further. I’ve had two doctors tell me it’s all in my head. It starts to affect you after awhile and there becomes this lingering feeling in the back of your mind that you really crazy. I even had a psychiatrist tell me that i don’t fit any of the criteria for a conversion disorder, but it still gets in your head. I’m glad to see i’m not alone.

12

Yes, my psychologist also said nope, not conversion disorder, and told me to stay strong and keep searching. I was referred to a new neuro after the Hopkins debacle and she was awesome. She ordered a full recessive ataxia panel and 4 out of the 18 showed VUS’s. She admitted to me that she had a few people with 1 VUS, but never 4 and another neuro within her practice has more expertise with Ataxia so I will meet him in 1 month, but she also set me up with a geneticist appointment for next week :smiley:. Of course, my symptoms are greatly reduced right now almost back to normal like before, but I’m more hopeful that things are moving in a positive direction. Maybe I’ll actually get diagnosed! I know getting a DX will not change anything much, but maybe I’ll know best how to handle future attacks because this past one lasted over 1 year if I know what in the world is really causing it.
Never feel badly for not “staying strong” all of the time! This is a tough road, especially when answers are elusive at best at times. Best wishes to you in your quest for answers!!

13

I’m so glad to hear you’ve made progress regarding a diagnosis🙂 When your gut feeling tells you ‘experts’ aren’t always right…
So many people have ataxia symptoms as a ‘side effect’ of illness/trauma/gluten sensitivity etc and MRIs show perfect cerebellums…:thinking:
It really pays to do the utmost to be referred to a Neurologist who actually specialises in Ataxia.
:blush:xB