Urinary tract infection and chest infections due to infections due to ataxia

[Guyb]

Ive been having urine and chest infections on and off for yrs now my Gp prescribed 4 differanrt types to clear it up last time now just a few weeks later it’s back wheezing chest and wanting to pee all the time but nothing coming again I’m on antibiotics and steroids he dosnt seem interested in my ataxia

[xray25]

Hi guys I also suffer urine and chest infections under urology at minute but he dose not no why I have always said it's my concoction of meds, but he said there could be a link between my stroke and bladder my chest infections are food particles going down wrong way

[Angelcake1 in reply to xray25]

Hi xray25

Do you have speech therapist?

If not or if you haven't seen them for a while ask to see them so they can test/retest your swallowing reflexes and give advice on food consistency to help prevent food entering your lungs. Best wishes

[xray25 in reply to Angelcake1]

Hi angelcake1 yes I have a very good one I am on thickener in drinks and mainly soft food diet so on the whole on top of chest infections thank you xray25

[Angelcake1]

pleased to hear that. My husband had many years on it, but now has a PEG J fitted and is fed wholly on liquid feeds. I

[grace111]

just dropping by Guyb to say im sorry to hear of this and i hope that you will start to feel better soon. can you get someone to come to the GP with you as i find when i have someone with me they tend to answer my questions rather when im on my own and i say something about a symptom they are just silent. keep your chin up wishing you well. love grace xoxoxo

[Guyb]

ThanksGrace I might try that I thought it was a huddersfield thingx

[lucymockingjay]

Hi I'm in a similar position. I had a suprapubic catheter reinserted but I've had 8 courses of antibiotics over 3 months due to repeated uti's and chest infections I keep getting at the same time. I also am going to start using a thickener in my drinks again as I can go for a few days without drinking or eating whenmy swalling is bad. I've finally decided to have a peg inserted as I was very close to them putting in a ng tube during my last hospital stay. I don't want to be in the position in the future where I'm not able to communicate and they put one in when I don't want it so I'm going to make the decision while I'm fairly well to have the peg inserted. Hopefully everything will then get a bit easier and it will help reduce the chest infections. It won't stop the asthma, or the ataxia but it may may some of the side symptoms slightly easier, as long as my carers take care of the wound sites properly!

It often feels like we're playing catch up with our symptoms, doesn't it?!

I hope everyone else who's having these kind of problems manage to get the help they need to get it sorted it out. Speech therapy are fab at helping with swallowing issues as well as simple communication aids, but It's easier if you can get help before it gets to crisis level. Unfortunately when I go into hospital my ataxia always gets worse so that always delays my discharge as they won't let me leave until my swallowing is deemed safe, even though we have to manage it at home whenever it happens!

I wish everyone well over the coming weeks though, keep warm and stay safe.

Love and hugs to all

Lucyxxx

[Guyb in reply to lucymockingjay]

Hi Lucy thanks for your reply I don’t know which are of the country your in, but I’m in huddersfield so my consultant is dr marios at sheffield you seem to be having same problems that i do il love it if we can stay in touch your very well informed Love Guy

[lucymockingjay in reply to Guyb]

Hi that would be lovely. I'm in Exeter. I've been to the neuro hospital last December and I am due to go again next year but generally find I manage things myself, as most people here are fairly clueless although recently there was a great campaign done inExeter which has raised some awareness particularly among professionals.

When I was in hospital recently, the respiratory doctor s said they would be led by what the neuro docs said to them when I became ataxic as they knew nothing about my condition but then the neuros said they would be led by me as they didn't know much about the type of ataxia I have. I have ea2 which is now progressive but the doctors here were not aware it could be progressive, or that it could cause some of the symptoms it does in me.

It all adds to the fun though, fortunately the speech therapy team and dieticians had been to the ataxia day put on for medics so we're pretty clued up which helped!

My daughter also has ataxia so we've just got on and managed it for years and she's just started a university degree after being home schooled for years so I'm a very proud mother at the moment.

Every day is a challenge for her and she is exhausted but she is amazing. She is certainly an inspiration to me.

I think we have to try and stay as informed as we can and help each other as that is the only way to get anywhere.

Although I have a nice gp I don't ask for advice regarding the ataxia because she wouldn't have a clue!

Take care guy and I will try and check in more often to the site as I've been really rubbish at doing that recently!

Love lucy xxx

[Guyb in reply to lucymockingjay]

I can’t even find out what will happen in the future Love Guy

[Angelcake1]

Hopefully if you can get hydrated through the PEG it may reduce the number of UTI, perhaps lack of fluid may be a cause. I care for my husband , he has an ISC rather than in dwelling, as soon as the urine clouds I up his fluids, it does seem to work. He too always seemed to have a chest infection and UTI together, but in hospital it takes them ages to get IV fluids prescribed and put up, then someone will come along and disconnect it, forget to reconnect, it gets thrown away because they don't know how long it's been stood. No one then bothers to get a doctor to prescribe more, but on his notes it looks like he's had a litre and f fluid. I stay with him all day in an attempt to make sure he get the treatment he needs, hard work for both of us. Prof Hajivasiliou has asked, to consider a drug to suppress immune system, the constant infections with raised white blood cells could be a reason for the deterioration of Ataxia, which is idiopathic.

[Guyb in reply to Angelcake1]

Thank you that’s just what happened to me what is the likely outcome of ataxia i also have peripheral neuropathy does it go the same way as motor neurone Thanks Guy

[Angelcake1 in reply to Guyb]

Hi Guy

Do you know which kind of Ataxia you have, you may get some indication of likelihood.

Apart from Ataxia and Motor Neurone both being neurological as is MS and a host of others, therefore similarities will be seen and perhaps we can learn from each one, but they are separate diseases and will take a different path. That's how I see it, but I'm no expert.

All the best.

[Angelcake1]

Hi Guyb

Sheffield Hallamshire, have an ataxia nurse, you can call them and they'll get back to you, or email if you prefer. They are very good.

[Mermaidia11]

It makes me so angry That we are all left to get on with it. But we a good job we all too. People power will Get us through.

I asphiated a cuppa and got pneumonia this year and bingo got a uti as well.

I have asked about and done a bit of reading and now take a high dose of vit c every night - it’s good for lungs, but also fights bugs in urinary tract. It’s natures antibiotic apparently. Havnt had anymore so far. But it’s early days! But it’s worth a go. Google vit c and lungs/vit c and uti.

Sitting slightly up when sleeping also stops the mucus from resting in your lungs overnight and deep breathing excercises and deep coughing can help strengthen coughing muscles, which are inevitably weaker. I found some useful ones on copd website.

Drinking lots and lots is a nuisance but it does flush out the bladder - and we must keep our brains hydrated at all costs.

I have gone on about it, but recently started a course of LDN. It’s made a positive difference to me so far - it supports your immune system and triggers endorphin release.

There is a lot of net by neurologists who explain the mechanism and why and how it works. I’d advise looking into it folks?

Good luck to everyone - you are all so kind, caring and supportive and it’s extra unfair therefore to have to trevail this for ourselves and loved ones. With scant medical assistance and informed support.

But u can’t beat someone who doesn’t give up eh? And people power will get us through - in the absence of quality care from our crumbling N.H.S.

Love n lite xxx

[Guyb]

Hi I’ve been admitted again two weeks ago after suffering violent seizures over two days it’s taken a full two week course of very strong antibiotics to see it off was sweating vomiting and also the other end I was hallucinating and didn’t know what year it even was