chest infection and ataxia

[Guyb]

i was recently told i had ataxi though which type will test for in january i keep getting chest infections that dont respond to antibiotics my gp said my lungs temp and bp wers fine im also sweating alot and sometimmes my mouth dosnt want to open anyone else ever been like this

[wobblybee]

Hi Guy😊

Hardly any two people with Cerebellar ataxia experience exactly the same symptoms to the same degree. Although it has to be said, we do share a lot of symptoms, so we totally understand🙂

My blood pressure is ok, no chest problems apart from coughing caused by inadvertently swallowing/choking.

I often get very hot, but on the other hand I can get very cold, and have to immediately address the situation 😏 Sometimes I have to resort to going to an outside door for cold fresh air, I'm gasping for breath.

Quite often GPS aren't familiar with our condition, and it's more useful to speak to a Neurologist for specific advice. A Speech Therapist can also help with issues about eating/drinking/choking, GPs can refer.

On ataxia.org you can look at Fact Sheets relating to many things associated with ataxia, there's a useful list of Medications for Ataxia Symptoms.

🙂xBeryl

[Guyb in reply to wobblybee]

thank you ill go have a look as im not due to seee dr marios till jan Guy xx

[planetzed in reply to wobblybee]

Hi Beryl, I frequently get the hot and cold thing especially when the tumble dryer is running, have to run to the back door for cold outside air. My legs and feet really feel the cold too, even when it's not actually a cold day. Must say I couldn't see an ataxia link there but..who knows.

Julian.

[Guyb]

it just gets worse friadY night thought i was going to die woke freezing cold dripping in sweat couldnt breeth this is getting scary no GP just a nurse practitioner who more or less ignores me

[wobblybee in reply to Guyb]

London and Sheffield Ataxia Centres have a designated Ataxia Nurse, I'm not sure about Oxford. Unfortunately here in Newcastle we've been with one for almost 2yrs, lack of funding seems to be the problem. If there is something troubling you, contact one of the Ataxia Nurses, hopefully you can be pointed in the right direction 🙂xB

[JanineG]

Hi my partner was diagnosed with Late Onset Ataxia it was after having many of the symptoms you describe.

[Guyb in reply to JanineG]

how did he go on i can hardley walk write or most things

[JanineG]

Hi Guy, he is still mobile. His walking is somewhat affected. He can't walk in a straight line and vers off suddenly. He can write but it's not as clear. Worst affected is speech, he slurs and has problems articulating certain sounds. His hand eye coordination is OK when he is concentrating. He also has trouble swallowing, particularly drinking he coughs up.

How long have you been diagnosed and how quickly have things progressed? Are you working?

Regards

Janine

[Guyb in reply to JanineG]

hi Janine no im not working my gait is too bad and i fall over slurred speech the illness itself is slowly getting worse my Gp and neurologist wernt very good till i saw the professor marios at sheffield im going in in january for lots more testing to try find out exactly what it is but theyve said may never find out

[Guyb]

i am finally near to getting a firm diagnosis ive only just been told i have ataxia of some form but got my old gps notes and there was mention of it in 2005 why wasnt i told then when it was mild

[rankin1st]

Hi guy b

My husband just had an x-ray that showed pleural effusion (fluid on his lungs) and gets bad sweating episodes freezing cold hands and his feet and his temperature to touch is freezing but shows normal as does all his other vitals. Recently diagnosed so no idea why sorry