I am not under a consultant as they don't want to see me unless my genome results show something (not back yet) as nothing they can do! I have cerebral palsy ataxia and dystonia and they think a very rare neurological condition just not discovered that yet! They told me that it was going to deteriorate and I would end up in a wheelchair full time unable to do anything etc. But that wasn't much help when they then discharged me!
So here's my problem. I've been getting more wobbly and the Physio at my last visit said I had lost some strength. On Monday I woke up and I could hardly walk as in I am so wobbly it's unsafe and I'm basically sliding along walls or using my chair. I mean my walking wasn't great before but I could push through and use walls to bounced off. This is much worse and I really don't know what to do or who to tell. I have no balance and my legs just don't want to work. They also seem to have gone very cold my feet are always pale as no circulation etc but that's not a new problem. I knew this day was going to come as London told me it would when I was discharged but I was hoping not so soon. I should probably add the ataxia, spasms and my tremor has got worse. My legs also feel super weak and just weight bearing is hard enough!
So my questions is what do I do? Should I go and see my GP? Contact my Physio? Or even have any of you been in this situation before and if so what did you do? What support did you get? Etc
Thank you I'm advance
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Grapes12
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first, i'm sorry this is happening to you. I have a known rare neurological disorder, dystonia, ataxia, and who knows what else is it possible you've contracted an infection of some kind? the reason I ask is that whenever I get sick (a cold, virus), all of my symptoms worsen: it's harder to stand upright, my ataxic gait becomes ridiculous, the malaise becomes so extreme I feel like i'm dying, and I jerk all over the place.
I looked at your page and don't know your gender, but the above also happens to me during pmt (fun!).
at the very least, even if you might have an infection or are struggling through pmt, it still needs to be noted as it can provide clues to your illness. I would call your gp, your physio, perhaps even your potential specialist. one thing I've learned is not to ignore my suffering. when I feel nervous about making a stink I imagine what the doctor would do if she/he were feeling the way I do, experiencing my symptoms. would they sit quietly and wait for it to go away/worsen? of course not! if they don't respond properly, then I start looking for someone else who will help me.
when doctors have responded to me properly, they got me in right away, sometimes tested me for uti (common complication of spinal disorders), and got me medication right away, whether it was steroids, antibiotics, or neuropathic pain medication. no one should suffer needlessly when treatment is possible.
As I have said in many posts I think that there is the right people out there he is called professor Hadjivassiliou from the Royal Hallamshire Hospital in Sheffield you can ask for referral from your go/neurologist you can also get a form of ataxia uk website the person in question is a world leading expert in ataxias if anyone knows he will he also has videos on you tube, lots of academic papers online and research. I do believe that the professor will give you answers and I’m sure he has mentioned dystonia in one of his research papers. I hope you get sorted soon.
I agree with this because you are in Sheffield - I am in london and my genome result took 2 years to come. I called Ataxia UK and they told me that Prof Guinti looks after the London region, so I got my GP to refer to her, May you can call Ataxia UK and ask which consultant is in charge of sheffield.
Also don't stop physio. do seated physio - I do seated physio when I can't stand.
Professor Hadjivassiliou runs the Sheffield clinic I’m sure there all good the person in charge are all Professors of neurology I’m not sure the uk ataxia clinics are as good as each other.
Agree with GlutenLadYorkshire, go to the best, 'areas' in referrals do not exist any more, thank goodness, ask to be referred to the one that knows most, it is entirely your choice, if you have no choice, the nearest will be chosen, they may also be excellent with ataxia, if you are very lucky. Google 'ataxia specialist centre' and choose one nearest. Neurologist are excellent, but not for ataxia necessarily.
I understand as, in my case, I was signed off by the neurologist and physio so makes you feel alone. There are times when you need to talk to ah ‘expert’. I think I’d start with a GP but you may have to educate them! I was diagnosed without any explanation - I had to look it up. What a shock! I’ve had CA for 4 years and it has progressed a lot and no help. Good luck Grapes12.
I am so sorry to hear you are in the same situation it doesn't sound any easier with an actual diagnosis either. I am still under a Physio so I have contacted them to see what to do as my GP was no help. Thank you.
Thank you everyone. I am no where near Sheffield but am a lot closer to London. But in the passed I have found that ataxia specialists will not see me as I do not just have ataxia! Thank you for all the suggestions
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is it possible you've contracted an infection of some kind? the reason I ask is that whenever I get sick (a cold, virus), all of my symptoms worsen: it's harder to stand upright, my ataxic gait becomes ridiculous, the malaise becomes so extreme I feel like i'm dying, and I jerk all over the place.
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