Diagnosis on symptoms alone

Despite having physical symptoms of ataxia (wobbly legs, "past pointing" and failing the rapid alternating hand movement test) I was very relieved to get my MRI results back as normal today. Has anyone gone on to have a diagnosis of SCA purely on symptoms alone? Or had symptoms with a negative MRI?

The hospital just shrugged their shoulders when I said - "but what about my symptoms?" They said,"oh, don't know about whats causing that"

`/.,you take your MRI and get a second or third opinion. If you have to pay yourself I would just bite the bullet and see how you progress while you research all your symptoms. I cannot understand the reason doctors and hospitals drop the ball and don't keep searching for a diagnosis. It appears they only look at 1 (one) symptom at a time unless it is life threatening, It does seem like that at my HMO. I think age is now stopping them, so they don't waste resources. Your auto mechanic has to keep looking for a diagnosis until they find it but a doctor does not it appears. Jerry

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ive had a mri of the brain . they see shrinkage of the cereballar . i do have the symptoms of ataxia but havent been 100 % diagnosed. never asked the dr. about my symptoms and ataxia but she sees it. ill know more 10/2.the problem with ataxia symptoms is theres too many other things it might be. i also have vertigo. hope this helps you

yes.............more opinion definitely. A neuro is essential. Good luck!

love and light

S-J

I have had numerous MRI scans over the years.

Marios at the Sheffield Ataxia clinic said he would expect the atrophy to be a lot more! At this stage

He has also diax HSP, which seems to occur with some Ataxia patients

All a bit confusing, in the big picture !!!

My first 2 neuros said my brain MRI's were normal. Today the third guy said he disagrees and sees atrophy of the cerebellum. Keep getting opinions. He also videotaped me walking, ordered physical therapy and gave me a script for Amantadine, far more than what my previous neuros did. What is past pointing and HSP? Wishing you all healing

Hi MooseHill:-)

Past pointing - the patient is asked to touch the examiners outstretched finger. Quite often the patient will misjudge the exact position of the finger, reaching out to touch but missing it.

HSP - Alan may be referring to Hereditary Spastic Paraplegia. The main symptoms are spasticity and/or paralysis in the lower limbs. MRI is usually normal. Molecular genetic testing is available for many types of HSP. see www.ncbi.nlm.nih.gov

Hope this helps :slight_smile: xB

All my tests were normal (a lot of tests), including MRI scans. I got unknown type according to my neuro.

I don't know why it takes so long to make a diagnosis, in the states it seems to take years, sometimes 5 or10 or more. I think if they cant diagnose a person then they should move that person along to another doctor or a panel to discuss and look for a diagnosis. I don't know how many times I have been told if the doc cant diagnose they may have to name the syndrome after you so you think it is a harder case to figure out not that the doc is a dumb ass sometimes.

That's exactly what happened to me. It's taken me 4 years and three neurologists to get a diagnosis of cerebellar ataxia. I was frustrated when I kept getting passed along but now see that as many eyes are on you the better. Third neuro referred me to physical therapy which no one else ever did. He also gave me a script for Amantadine if physical therapy didn't work. So, getting dumped by two neuros was a blessing in disguise.

My first time was today. I have tremor in my legs and the therapist told me that the goal is not to remove the tremor but work around it by making the legs stronger. I used to do yoga and walk but gave both up because of my condition, so haven't exercised since it's onset. She gave me exercises to do at home and I go back on Friday. I'm going to try walking again, not on the hilly roads in my area but on the flatter parts around my yard. I'm going to set up an exercise area at home and am thinking about chair yoga. Feeling a sliver of hope here tonight.

Moosehill is this going to be a mini ninja warrier training site. LOL I would like to try one of the climbing walls they have now to see how it would work.

I certainly am no ninja warrior, although I am mini sized! Today my training simply consisted of walking down and up my steep 500 ft. driveway. Baby steps. Can't imagine doing a climbing wall, but I'm 64 and had a hard time climbing a rock at 38. perfectly well. Also, I try not to use war imagery in dealing with my ataxia because I prefer to replace it with images of wellness and ability.If you say someone "lost' their "fight" against disease, you're calling them a loser.

I had an MRI and all the cells were dying or dead and that was 20 years ago. Things have went down hill since then. Slow at first, but changing faster now.

I asked a doctor about going to an outside doctor . I was told no problem but my MRIs and other diagnostics were the property of the HMO so any tests will have to be on my dime so there went my solution to my problem. On another note I think I am going to try to get an outside blood test for thyroid problem of freezing all the time but I have not found a lab that has good ratings so I can depend on the results. It seems all have bad comments of some kind.

One Nero says I have spots Ceribelum I have Severe symptoms of Eposodic Ataxia for 14 years So my Nerologist Orders me to a Genetic Nero to get tested But the new nuero notices nothing on my Mri And Says Im not testing you its too exspensive My brother has the same symptoms . and 11 people in my family have Migraine Which I get with my Ataxia But because she said I didnt show nero signs in the office from her nose pionting test. She wont do the test. I want to at least rule out eposodic ataxia Type 2 with FHM. I even had an episode in her office and she just had me sit done and never had me walk down the hall. I almost never have an episode in a doctors office This was a perfect oportunity for her to see it . but by having me sit down It went away after a few minutes. She then told me this must be tress or emotional . What? I am so frustrated with doctors Who think they are God. And then they Just send you away with a smug look on their face. and dont even care that you didnt get any answers