Last reply 7 months ago
Flu, then pneumonia with MS

Hi all, I was diagnosed only in June 2017. I started taking Tecfidera on Boxing Day 2017.
A week ago I developed flu, which knocked me for six. Yesterday I had shallow, rapid breathing and a racing heart and I called 111 as something just didn’t feel right. Because of the responses to some of the questions, they despatched an ambulance. They sent a crew round to assess me, wanted to take me in to hospital but due to my MS we came to an agreement that an out of hours GP would visit (which she did) and I was told I have early stage pneumonia so she prescribed me some amoxicillin.
I have developed a rattle from my lungs and I am not getting any better yet… I know I need to give it 24 hours for antibiotics to kick in.
The reason for the post is because I’m worried now about relapsing with my ms. My priority is to fight this infection first, but I know that infections can trigger relapses.
Just hoping someone can provide words of encouragement or has been in a similar place?
I have remained positive about my MS diagnosis s, and have done lots to make it fit in with life, but this infection is really testing me and I am very low.
I have 2 small children (3&5) who are my world and I am determined to fight but I am pretty weak at the moment.
Sorry this is not a bright and beaming post x

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


edmontonalberta
7 months ago

@amo123

Sorry to hear about your recent challenge. Hopefully a good night sleep will help. Out of curiosity, who is helping you with the children?


miapi
7 months ago

@amo123

I understand so much how you feel.

I was diagnosed last summer with MS, and around a month ago I got a very bad stomach flu. I even developed a 41 C fever, and started shaking so bad that they also had to call 911 on me (I had never had such high fever in my life btw except for once when I was a child).

I was so scared of relapsing.. and then I didn’t!

To be completely fair I haven’t had a new MRI since then to know if there has been any sub-clinical activity, but yeah at least I didn’t develop any new clinical symptoms.

I am even actually fighting a small flu as we speak (I share a house with other people who unfortunately get sick a lot :/) and I am again worried of what this can do to my ms. So yeah I understand how you feel.

Buut, as an advise: try to not get too scared about it. Because there is nothing you can do now anyway. What is done is done, and all you can do is focus on your recovery.

So yeah, I got a horrible horrible infection, involving insanely high fever, and I didn’t relapse. So there is hope.

Try to give yourself time, and proper care, and know that whatever happens there are solutions : )

I wish I could say ‘everything will be ok, but of course I don’t know that’, so all I can say is ‘stay strong, and positive’.

MiaPi xx


amo123
7 months ago

I just about survived the night but there is no improvement. Fortunately I have a husband who is doing everything as I have literally been in bed for a whole week unable to move


maj11
7 months ago

So sorry to hear about the time you’ve been having. It’s hard to stay positive when you are ill and are thus reminded that you have MS. I am going through a full blown relapse right now and was honestly the picture of health before it happened. I had EBV last year and only had a very mild relapse after (I know this in hindsight as I was only recently diagnosed). I guess, what I’m saying is, that you never know so try not to stress.
I know of lots of people who’ve gotten sick and not relapsed, and lots of people who were doing great and then for whatever reason have. Control what you can- rest, eat well and try not to stress. I do know it’s hard to stay positive at times, but if you break the day up into manageable tasks and work your self-care into it, I find it helps.
xxx


amo123
7 months ago

Thank you for your words and empathy. MaPi! I hope you make a fast recovery x


inga
7 months ago

Hi, just joined this group. This morning. The words of encouragement are wonderful. It’s really heartening to realise there is support and understanding out there. Stay strong amo123. You can and will come through this damnable stage. X Inga x


stumbler
7 months ago

@amo123 , when the body gets an infection, the immune system gets activated. And our immune system is compromised!

This can cause a “pseudo-exacerbation” of our MS. This is a worsening of our MS symptoms which is temporary in nature, as it improves once the underlying infection is cleared.

I’m just wondering whether you should be admitted to hospital for intravenous anti-biotics to get this under control. So, if you don’t improve, don’t hesitate to use 999.


barn-y
7 months ago

Hi there, it slunds reslly rough what you are going thrkugh just now. I hope you feel beter soon.
i got diagnosed last March and started taking tecfidera about 16 weeks ago. About the same time i started getting horrible cold symptoms. It took me about 4 weeks to go see the doctor. Typical bloke 👍😊
I got steroid inhalers to help with breathing. I asked if tec side effects might be behind it. But there was/is so much cold and flu going about both me and the gp put it down to a bad dose of the cold and not a side effect of the tec. Anyway. It didnt clear. I got antibiotics which made me feel like crap almost within 24 hours. But after the week i def felt better although was still well short of being 100%. This all lasted over about 3 months….Anyway none of that helps you and i suppose what im trying to say is speak to your gp as often as you need to. Let them know all the symptoms you have. I dont think i’ve had any relapse in thst timeframe either and i reckon i’m probably a out as normal now as i can be 😁
Its really hard to pin things down to ms i hope you feel better soon – because the flu is not great at any time but especially when you are coming to terms taking tec for ms.


rambles
7 months ago

Hi amo123. I’m really sorry you are having such a rough time but like others have said, do call the doctor out or 911 if needed. Like Barn-y, I got an infection not long after starting Tecfedira. Two rounds of antibiotics later I still felt unwell but definitely better than before. It does make our ms symptoms worse to be hit by an infection . I really hope you feel better very soon. It is great you got the antibiotics quickly!


amo123
7 months ago

Update to all you lovely people.
Thank you for your words of encouragement. I had another emergency visit from a GP today as I went further downhill last night and he confirmed I have a lung infection – secondary bronchitis. He prescibed me with 5 days steroid prednisolome. He advised me to stick with the antibiotics too to combat any bacteria that may be hanging around too.
The advantage of the steroid is that it’s from the same family that we would have during a relapse so my MS symptoms that have flared up should start to calm and settle very soon. I only took my first dose at noon and my breathing is easier and I am feeling more in control and my body is not feeling like it’s fighting (my resting pulse was over 100 for 3 days, and my breathing rapid and shallow)
The GP who visited was knowledgable about MS and he said that I took the right course of action. If I had waited until Monday and left everything the likelihood is I would have ended up in hospital.

My advice to anyone in a similar situation is to trust how you are feeling and get advice at the earliest opportunity. Do not feel like you are being a pain in the a**e as I did. The treatment I have received has hopefully shortened the duration of my illness, and whilst I’m not better, I am definitely less frightened and don’t feel as though my body is shutting down.

Thank you all – and stay well xx


amo123
7 months ago

*** in other words, the diagnosis of pneumonia wasn’t right, so antibiotics are not the right treatment. However, I have had the best of both worlds by having antibiotics and steroids***


stumbler
7 months ago

@amo123 , I’m glad you’re feeling a bit better. 🙂


rambles
7 months ago

Hi @amo123. Glad the GP was so helpful and you are feeling a bit better.


potter
7 months ago

A couple of years ago I went in to see my GP because I had a bad cold, when the nurse saw me she said I sound awful and put me on a breathing machine. When my GP came in she said I had pneumonia, my husband was with me so she told him I had to stay in bed for two weeks and he had to take care of me. This year I had a relapse right before Christmas and half my body went numb, my neuro gave me steroids. Just as I was finishing them I got the stomach flu, It is no fun to have vomiting and diarrhea when you can’t feel your bowel or bladder. So I was down and out for three weeks and still have trouble with one arm. So hang in there, we have all been through it and survived. Potter

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.