I thought it was just a cold!: Not on... - My MSAA Community

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I thought it was just a cold!

Cwright170994 profile image
β€’16 Replies

Not on ocrevus anymore, but I had the 1st of my monthly tysabri on the 20th, and I've since got a chest infection 😞 a couple of nights of not being able to sleep properly had really affected me, to the point where on Monday just gone I was wanting to get in to see a GP! But, when I called them up, they had no appointments that day, so the receptionist told me to call 111. Called them, and the person told me to get to A&E! I like to text my carer, just to let her know that she might not see me, and instead she immediately made her way to me to take me to A&E (what a star ✨️). Cue me calling 111 back, to then call 999 back, just to get the ambulance cancelled. In the middle of me calling 999, my carer came in and started loading my manual wheelchair into her car. I got myself all ready for the hospital with a coat, a face mask on, and another one in my bag, my blue badge also in my bag, and then my carer drove me to A&E. There was a queue just to get to the reception! 😒! However, there was a blind woman behind us, and my carer had told her how many steps to take when the queue moved, the woman's guide dog is called Felix, and I accidentally gave him a scratch on his behind 😱 I told the woman, and she said that because she wasn't using the handle, just a standard lead, he wasn't "working" ❀️ behind the woman, there was a gentleman who had cracked his ribs, and he couldn't stay stood up. So, my carer got a plastic chair for him while a nurse got a wheelchair. My carer helped the gentleman up off the floor, and then onto the wheelchair when the nurse came back with one. We had a bit of a laugh when she ran back to her car, because we hadn't properly logged my blue badge with the parking people, and the carer told me, "stay there." 🀣 So, it took me 3 1/2-4 hours for a Dr to see me and write a prescription. The hospital pharmacy doesn't stock the antibiotic I was prescribed, so we went to a pharmacy by my GPs. Cue us waiting half an hour to get the meds πŸ™„ I thought it'd be quick because I just needed 1 med! I had to tell a woman off because she had jumped the queue in front of me! Imagine doing that when there's a person with a walking stick sat down because the chemists were completing prescriptions for people in front of you πŸ˜‘πŸ˜’ but, as soon as I got them, my carer brought me back home, and I took the 1st lot of the tablets as soon as we got in. Sure, I had to take 2, and since then it's just been 1 a day. Last night, I was able to sleep led down! Previous nights, I'd tried to sleep led down with my husband, to then take myself to the living room so I could sleep in the corner of the settee where I could be comfortable sleeping whilst sat up! I can't wait to tell my carer today! Didn't see her yesterday because she had an appointment with her bank, and instead I had a carer that I had previously, when my carer was on holiday, and we went out for lunch! This carer had been so busy that morning with other people and then visiting her uncle who had died that morning 🫣 that carer didn't even have time for breakfast, because she normally has it at around 11 😱 so, lunch,and then back home for a sleep. When my husband came home, an hour later than normal because he had to do some bits for end of month reports (he's an accountant), we did homemade leek and potato soup! So much of it that he's got lunches for the next few days! I think he's happy seeing me actually have an appetite again, and actually eat something in the evening with him! Last night, I thought I'll sit up in bed, wearing my Oodie, but I couldn't get comfortable. So, oodie off and brave laying down... I managed it! I survived! Even nipping to the toilet at 2ish for a wee, I did it! Still woke up at half 5 mind, but that's my normal time, rather than half 7, missing my husband calling out "good morning" when he actually woke up! I was the 1st one today to roll over and tell him good morning when I properly woke up!

Now today, I've got a med coming through the post. This med was prescribed to me by my new neurologist because tegretol is in short supply in the UK, and its probably the reason why I'd had so many epileptic seizures in the past few months. I'm on lamotrigine, you see, for my seizures that got me in to see a neuro back in 2014! Tegretol negatively interacts with lamotrigine, and all it took was a new Dr to spot the interaction, rather than hospital Drs and my previous neuro πŸ™„πŸ˜’ this new neuro told me this over the phone, and the reason why I was prescribed tegretol: it was to help with my spasming legs! I'm surprised I didn't pick up on it sooner, because I usually use the BNF to look up my medications! The BNF is the British Nursing Formulary, and I remembered using it in my couple of years of student nursing. However, I think my post ictal brain back in 2021, after I had the 1st of my status epilepticus events, screwed that up. The A&E Dr I saw on Monday was a bit surprised when going through my regular medications, telling her "175mg lamotrigine BD." The BD is an abbreviation used by UK medical staff, and is short for Bi-Daily, meaning twice a day. I did explain to the Dr, when she looked at me confused as to why I used that term, that I used to be a student nurse, whilst sat in my manual wheelchair, and I watched as that Dr looked up the antibiotic on the computer for any interactions with my regular meds. To be fair, I shocked the nurses during my stay, obviously back in 2021 when I used "going out for a breath of fresh air" to mean going out for a cigarette, because only nurses and HCAs used that term πŸ˜… to be fair, my mum used that when she worked as a HCA in nursing homes. She worked in them since before I was born! Bit crazy being able to go into a staff room where the staff were able to smoke before the "no smoking inside" rule came into effect. I was born in Sept 1994, and I remember being able to sit in there while waiting for my mum or nanna to finish their shift. Crazy!

So yeah, busy month for me! And I'm sorry I've wrote a post as long as War and Peace! πŸ˜… thank you so much, if you've managed to read this post in full πŸ«‚β€οΈ

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Cwright170994
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16 Replies
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Kit10 profile image
Kit10

Yes I read the whole post - what a carry-on!

I think lots of people use that way of talking about going out for a cigarette. A friend who died a couple of years ago - someone wrote in his obituary about him often "going outside for a breath of fresh air which he rolled himself." I once had a work colleague who asked for a break during a meeting so she could go outside for "a fag and some fresh air."

I used to think it was unfair that smokers got to go outside several times a day, so I took to going outside the door and explaining I was going for a non-smoker's fag break.

SandraKOE profile image
SandraKOE

I’ve not been on here in probably a month due to throwing my back out & being busy. I read your whole post & quite enjoyed it. Took some thinking on a couple of your terms. Not used to the way y’all talk there. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ Glad you’re better.

hairbrain4 profile image
hairbrain4

Sounds like you have run the gamut with doctors. I used to be a smoker & that's what I used to say too! 13 years smoke free! Now when I say that I really mean it!πŸ˜…

sashaming1 profile image
sashaming1

I was on Tysabri for many years with no issues until I tested positive for the JCV virus and then stopped and had Lemtrada foy my DMT.

Cwright170994 profile image
Cwright170994β€’ in reply tosashaming1

Was only able to take 1 dose of tysabri because they found I have high levels of JCV antibodies in me. My next new DMT was ocrevus, and I was offered kesimpta a few months back. I have looked up the risks associated with it.

1yoyo profile image
1yoyo

When one takes Tysabri the immune system gets weak. Try taking some vitamins, and probiotics. Your health system in the UK stings!!!!!

Cwright170994 profile image
Cwright170994β€’ in reply to1yoyo

I was taken off it because my bloods showed I have a high level of JCV antibodies. Only had the 1 dose, was put back on copaxone until my neurologist, back in 2021, got enough evidence to get me started on ocrevus. Was offered kesimpta in late August, and I asked my new neurologist what he thought of it as well as looking into it on medical websites.

Lucy54Abby04 profile image
Lucy54Abby04

I'm so sorry you've had such a rough go of it with the chest infection. There definitely are some nasty bugs out there in the world. I can only speak to my experience with Tysabri. For me it was a wonder drug. My fatigue issues greatly improved. The same for cognitive issues and heat intolerance. An example of this improvement was a friend and I traveled to Italy in the peak heat of the summer. People around us were commenting that it's so much hotter there because it's closer to the equator. I had brought cooling vests with me. I left them in Italy because I didn't need them anymore! My friend would look at me after walking hours and hours around the sights saying,"Aren't you tired yet?". I wasn't and wanted to keep going. I would still be on Tysabri today except for the fact that I started to build up antibodies against it. I pray you have even more success with it than I did.

Cwright170994 profile image
Cwright170994β€’ in reply toLucy54Abby04

That's so good! Obviously couldn't take more than the 1 dose, and I didn't feel much effects from it either πŸ€·β€β™€οΈ however, when I got started on ocrevus, it was pretty much immediately when I started feeling positive about this drug! The kesimpta uses the same chemicals as ocrevus, it just gets metabolised differently and is why you do an injection of it once a month, rather than every 6 months of getting bloods, wait 2 days, and then a full day in the infusion clinic.

bpriddle profile image
bpriddle

I will have my 75th tysabri infusion today. I haven’t had any issues with the DMT

Cwright170994 profile image
Cwright170994β€’ in reply tobpriddle

Well done! πŸ‘

mrsmike9 profile image
mrsmike9

You have really been put through the wringer! I'm glad you can lay flat again. I've only had to sleep in a recliner chair once when I had bronchitis and was 9 months pregnant. I couldn't breathe laying down. I sure don't envy you having to do that! But I am glad you are feeling better.

Cwright170994 profile image
Cwright170994β€’ in reply tomrsmike9

Thank you πŸ«‚ ❀️

Scout4x4 profile image
Scout4x4

If you have been put on tysabri. Who have been put the strongest and most effective DMT on the market. Have you been tested for jvc? If you haven't you need to be. If you're positive you may need to stop because it has a very high rate of PML.I hope things get better for you.

GratefulNeeC profile image
GratefulNeeC

Yes I did, and so happy you feel better and your caregiver sounds like a "gem.". God bless you! NeeC

Cwright170994 profile image
Cwright170994

Update: still not shifted the cough, but me and hubby went to a walk in Drs yesterday and he prescribed me some more antibiotics. Stronger than the dioxicycline I was on previously, and I recognise the name of this one, "erythromycin." It's used for pneumonia 😱 500mg twice daily! So, here's hoping πŸ™

Edited: the only reason I'm familiar with erythromycin is because I often came across it on my nursing placements πŸ˜…

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