Ataxia to Atrophy

[cymruralf]

Hi all

My neurologist diagnosed Progressive cerebellar Ataxia about 8 or 9 months ago. Thanks to the info pack and Ataxia UK they recommended seeking an appointment at one of the specialist centres (in my case at UCLH London (Dr P Giuntis team) Both neurologists and GP agreed and an appointment was made. I have recently attended the hospital and met the team. They were excellent and very thorough. At this time the cause of my CA was unknown. After the test I was diagnosed with Multiple system Atrophy. They also are doing the genetics test although they feel that will be ok. MSA can be `MSA-P (parkinsonism) or MSA-C (Cerebellar)

The symptoms of Ataxia and MSA are very similar. At the appointment I met the Ataxia uk representative who was extremely helpful. Anyone else with MSA on this site ( I have joined the MSA site which is very similar to this one)

Colin

[wobblybee]

Hi Colin😊

It's good to hear your positive comments 😊

I don't have your type but just wanted to welcome you 😊xB

[Pheobe13]

My partner has the same as you he is now awaiting a dat scan to confirm Msa his life is a big struggle walking falling over every thing and now the bladder which they want to fit a bag to and put Botox injections into the bladder life is crap at the moment for both of us !

[cymruralf in reply to Pheobe13]

Thanks for reply I have a DATSCAN arranged for April

[nettles1]

I have MSA and cannot stand unsupported. It is not genetic. Keep smiling Colin.

[cymruralf in reply to nettles1]

Thanks for reply

[fiona707]

I have been diagnosed with MSA-C. I just wish there was a hospital or clinic in South Africa.

[Mick3849]

I've been diagnosed with MSA--C having an initial diagnosis of CA and was recommended to see an Ataxia specialist in Oxford Dr Lennox carrying on life as best I can.

[cymruralf]

Hi All thanks for responses, I found it quite difficult to accept the diagnosis of MSA whereas PCA was easier to accept, but we must go on regardless

[Charley_]

Hi , my friend is in a similar situation as you. Although her condition started about 5 years ago with her left limb and lack of balance, her condition deteriorated significantly last year in September. She is now in a wheelchair and her speech is really slurred. Despite all of this symptoms, the neurologist at Great ORMOND Hospital still thinks is Functional Gait Disorder- they explain this diagnosis that is similar to a neurological condition, but the body goes into lock down due to severe depression and stress. They have not done a DAT Scan or genetic testing to exclude ataxia. In my opinion they are treating this condition very superficial. Did the GP refer you to UCLH? Thanks

[cymruralf in reply to Charley_]

Hi Charley

In the pack I got from Ataxia UK it mentioned the Ataxia clinic (Dr Giunti) I took that to my GP and they referred me. Took a couple of months but they were very thorough. UCLH neurological department is right next door to GOSH.

[Charley_ in reply to cymruralf]

Thanks for that, we'll speak to the GP, I think we'll continue with Dr Sharma for the time being to see where we can get to. Have you been in a rehabilitation program yet?

They are still saying to my friend that they don't think is Ataxia. They think is Functional Gait Disorder and that she can get better. We hope that my friend can recuperate although she is suffering severe depression and it's import that she wants to get better.

Did you get a permanent carer or someone coming a few times a day?

All the best!

[Pheobe13]

Have they told you of any form of treatment ? Or any information we are getting desperate 😟

[cymruralf in reply to Pheobe13]

Hi Phoebe

No mention of treatment or medication. It's worth joining the MSA trust site. Lots of info

[Mick3849]

Hi Colin,

I was diagnosed with CA cause unknown in Dec 2015, probably being unsteady not able to ride a bike or run comfortably for about 4 years, been bounced round several ENT Specialists to check my ears, my Neurologist suggested referring me to an Ataxian Specialist Centre and I got an appointment to see Dr Graham Lennox at Oxford University Hospital. He examined me and diagnosed me probable MSA-C with a hint of Parkinisms.  My symptoms are Lack of Balance wide shuffling gait, I've fallen over about 8 times so far this past year, trouble with fine motor skills picking things up, writing etc, bladder probs etc and slurred soeech which all seem to have gotten worse over the last 8 months. Strangely little or no dizziness, just had an eye test no longer need distance glasses but reading has got worse.  In processs of having physio with a Neurophysio and seeing a Movement Neuro in 2 weeks, been referred to an occupational and speech therapist.  I also have joined the MSA Trust site.

[Mick3849]

Didn't realis i'd alrready commented lol loss of memroy to that list