Results

[pollybanana]

I have had the results of my lumbar puncture, which doesn't show any significant abnormalities. My MRI is the same and CT scans blood tests etc.

My symptoms are very real, have another follow up with neurologist at some point. Do I accept there may not be an answer? I am sure others are in this position! Somewhat confused.

[wobblybee]

Hi😊 Over 25 yrs from the onset of symptoms, and 6yrs from the actual diagnosis of Idiopathic SCA, I'm still being tested. This is a situation familiar to many of us😏

It was a huge relief for me by just being taken seriously. Obviously it would have been a bonus if one pill would have been a quick fix but...😏

I was thought to have a link with a Recessive type of ataxia but the match wasn't 100%. Currently, the odds are on it being a type of Episodic Ataxia🤔(I have my own suspicions😉)

Keep review appointments with your Neurologist, research finds new info all the time, you just never know what can be helpful🙂

In the meantime, keep as active as possible, don't forget there are medications to alleviate certain symptoms ( if you need them) and therapies too🙂

Keep in regular contact with us, and don't forget there are several other online Ataxia Support Groups (see Facebook)🙂 Don't underestimate the psychological benefit, it can make all the difference😊xB

[12taz]

I have also had all the tests which show nothing still waiting for appointment in Sheffield they don't seem to be in a hurry so frustrating no medication ore therapy

[suzie44na]

Hi, I don't have a diagnosis now either, the specialists don't know what is wrong with me. I have tremors, dystonia in my neck, muscle twitching all over my body, peripheral neuropathy etc. All they are saying is it will be genetic disorder and it is upsetting not knowing, I know how you must be feeling. I hope they find an answer for you, I am not giving up looking for an answer, as far as I can that is. I keep looking myself I did an A-Z search of rare diseases that fit my symptoms and came out with three possible things, so hoping to rule these out.

[carol31271]

HI all CT,MRI,lumber puncture came back normal. It took a long time I had lots of blood tests before my neurologist found something. Don't give up its frustrating, but keep pushing for a diagnosis so you can get the best treatment for you, and open some doors to help you in the future. They said it was idiopathic illness to me, don't accept this, they often say this when they haven't found any results YET. Try to stay positive ,keep as active as you can.

Take care and all the best. Carolx☺

[pollybanana]

Thank you for your replies. I guess I will have to take each day as it comes. I don't know what other tests they can do. I have no family history with neuro problems that I am aware of. How far back can this go without showing in respective generations? How quickly will it progress? or rather how long is a piece of string. Really fed up at the moment although I know I shouldn't be. There are many people a lot worse than me. 😡

[sylviagreenhalgh]

It took 5 years for me to be diagnosed with normal pressure hydrocephalus. I was passed round like a parcel to different consultants . was in a wheelchair for over a year. I had no feeling in my legs from the knees down so I was constantly asked if could feel pins being stuck in my legs , when I said no they did not believe me. the brain scan showed hydrocephalus and damage to the cerebellum so I was diagnosed with cerebellar ataxia as walking impossible as was balance and urine incontinence. when the neuro did a lumbar Puncture and CSF was drained my walking improved so I had a shunt fitted to drain the fluid and I have improved so much now. can get on a bus on my own, ditto trains. I went on a coach trip to Yorkshire and it was great and we were out everyday- it took about 6 months for my legs/walking to improve. so this is a success story in the end. If you are unlucky enough to have a rare condition it can take a while to diagnose it so dont lose heart and concentrate on what you can do. My partner of 20 years left me as he could not cope with my disability but at least on my own I can do the things I want to dolook after yourself and keep smiling ! all the best Sylvia