Cerebrolysin : Hi all, My friend has been... - Ataxia UK

Ataxia UK

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Cerebrolysin

Charley_ profile image
7 Replies

Hi all,

My friend has been diagnosed with C A. It started with just the left leg being affected and the GP or neurologist never gave her a clear diagnostic.

Last year she had a series of injections with Cerebrolysin in a clinic outside of the UK. Shortly after the treatment, her condition deteriorated abruptly and she is now unable to walk, speak or swallow properly.

The neurologist in the UK believes that there might be a connection between the treatment and her condition worsening. From what I read online, there are no such side effects to this treatment. Has anyone else with CA ever had this before? If so what can you tell me?

Thanks

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Charley_ profile image
Charley_
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7 Replies
neta profile image
neta

To be honest,Ihave never heard of this drug, and you dont say where the clinic is. At this point,I would try to be seen by a very good neurologist for an evaluation.

Charley_ profile image
Charley_ in reply to neta

Hi Neta, thanks for your reply. The clinic is in Romania, Cerebrolysin is made in Austria and from what I read online is mainly used to improve cognitive functions or for people with dementia or Alzheimer's. What it also says is that it's a nootropic drug, if you know more than me what that means.

I think the reason she went for it was because the neurologist in the UK never gave her a clear diagnosis before. They said it was a functional disorder, but no other specifications or treatment was given.

neta profile image
neta in reply to Charley_

Right.CA is a very mystifying disorder which is hard to diagnose. It is a motor, not cognitive,(at least not in me) disorder. Clinics in strange countries, offering miracle cures, are generally frowned upon. But I do understand her.Try another neuro..I don't live in the UK but many folks on this site do and can direct you.

Charlotte6789 profile image
Charlotte6789

HI Charley. I am suffering very badly with brain damage, and am keen to fix it, so I am looking for somewhere that uses Cerebrolysin.

Could you do me a massive favour and PM me the information for the clinic your friend attended?

Thank you.

ok_violette profile image
ok_violette

Hi. I suffer from CA since I was 2 years old. I am from Romania but I live in UK for 5 years. Here in UK, all the Neuro specialists I've seen didn't give me a clear diagnosis and what is worse, they didn't give me a proper treatment for keeping my CA under control. They gave me only thousands of paracetamol and some drugs which made me feel like a drug-addict.

So, twice an year, I go to my hometown, called Oradea (is the first city when you enter in Romania through Hungarian border), to take the Cerebrolysin perfusions (10 each time).

The clinic is called: " Spitalul de Neuro-Psihiatrie Oradea" and doctor's mame is Simion Aurel.

And no, Romania is not a "strange" country as other said, and yes we have the best Neuro specialists from all Eastern European countries.

Good luck!

Bear1927 profile image
Bear1927 in reply to ok_violette

Hi!Are you still taking Cerebrolysin?

ok_violette profile image
ok_violette

Yes, without them I would have been dead by now. And no, not even today Neurologists from UK did not find an effective treatment for my neurological condition. Still looking for a real "professional doctor" to find it, meanwhile God bless whoever invented Cerebrolysin!

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