Anyone got ms as well? : Anyone with pbc and... - PBC Foundation

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Anyone got ms as well?

Lagathavikings profile image
25 Replies

Anyone with pbc and ms out there?

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Lagathavikings profile image
Lagathavikings
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25 Replies
Nellies47 profile image
Nellies47

I have been investigated for m.s and still having regular MRIs as tests are in conclusive. I have had optic neuritis and abnormal reflexes and weak legs last yr.

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Thankyou for reply xx I see your in Ireland. Hopefully you will have a good consultant xx

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Hi. Also forgot to ask. Did you have any sensations around your face and ears? Xx

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Yes!!!! That's how it started before the optic neuritis. Still get creepy feeling from my eye to my ear when I'm tired.Did you get diagnosis of M.S.

Lagathavikings profile image
Lagathavikings in reply to Nellies47

No I havnt but I thought its possibly what I have... Spoke to doctor and he referring me to neurologist... But there's a wait so won't be yet. So you havnt had a diagnoses as such xx

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Ah, hope it goes well. I've been through that and it's frightening, I understand. I have been for lots of tests and decided to move on as the symptoms settled after a few months. Then I got diagnosed with pbc and some of the symptoms overlap.I have a strong family history of M.S.

I hope your feeling OK and get well cared for.

Nelly

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Thankyou for reply. I'm just really confused about everything.. I'm not sure what's going on with me.. Had an OK day today.. I've only just been diagnosed with autoimmune hepatitis and pbc.. So much to take in.. I'm going to just see how it all goes. I feel quite weak in my legs and arms.. Holding a hairdryer aches my arms 🙄. Been hospital 10 days and home nearly 3 weeks.. Not been out. So reckon muscles have seized up a bit... I'll just see how it goes xx hope you are OK.. Take care and thanks again for reply hun x

Nellies47 profile image
Nellies47 in reply to Lagathavikings

No problem at all. Yes I feel the same. Only diagnosis in Nov 2020 with pbc and the m.s thing still in the background. It's all very difficult, I'm finding it hard to work with Fatigue. My legs and arms were the same, I started walking everyday and gradually it improved, walking was so painful at first but it improved over a few weeks.

Don't be too hard on yourself, mind yourself.

Nelly

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Xxx take care too xxx traci x

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Hi nelly. Just wanted to ask how your feeling today xx we got snow now and it's so cold. Is Ireland still in lockdown?? I don't listen to news makes me anxious x love traci x

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Hi, I'm OK, think I have cystitis., very uncomfortable. Just had my usual nap.How are you.

No snow here yet, its promised for the end of the week. We love snow here, well the kids do.

Yes still in full lock down here.

Hope your anxiety is OK. I find just taking one hour at a time when I'm anxious, and getting out for fresh air.

I have suffered with anxiety for yrs now.

Take care

Nelly

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Oh bless you nelly. Yes I'm sort of OK. Thanks. Bloody anxiety!! Had the sickness this morning but took my antisickness meds. Feel OK ish. Got no energy today atall. Dry mouth. Weak arms n legs. Jesus I'm falling apart!!! Glad your OK. Think the lockdown is just pulling me down. Do you havd a quiet area you can walk around with not passing people. Where I live I'd built up so very hard to avoid people. Although I was covid positive on 17 Jan I still worry I'll get infected again xx love traci x

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Hi.Oh sorry your feeling so bad, I know what you mean about falling apart, I'm a wreck and I hate talking about it to my family cause I'm afraid they will be sick of my moaning.

I live in the County side on a farm so lots of space. Your right to be careful about covid. Sorry to hear you had it, were you very sick.

I'm still Working, I'm a public health nurse, and I'm worried I will get it. I'm still waiting to get vaccinated.

Also the fatigue is hard to deal with at work.

Great to chat with you.

Nelly

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Hi hun. I always like talking to you. You know how I feel. You can talk to me anytime.. Always here for you the best I can be. I can't believe your still working. And surely you should be first to get jab??? To be honest the diagnoses and covid was all at the same time si no idea what was what. Felt ill in hospital I was so weak they kept me in after going outpatients only for blood tests!!! They tested me 8 Jan nut came back negative. It was one of those lateral flow I think. Then 17 Jan did another proper one and positive but I'd already been sent home when I got result on 19th Jan. Never had breathing probs... Just felt floored. But again don't know if it was liver or covid or both!!!! Wish I could walk where there was space. Live in area that's quite built up. I'm so fed up with this pandemic. Given me worst fear of my entire life. Everything feels so abnormal but same for everyone not just me of course. I think mental health is suffering big time. Who has ms in your family??? If you don't mind me asking xxxx

Lagathavikings profile image
Lagathavikings in reply to Lagathavikings

Sorry if I repeat myself. Have brain fog most of the time. Had it for years x🙄

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Thanks and you too, its interesting we both have ?m.s, but I'm thinking my symptoms are pbc too.I had a really bad flue dec 2019 and it was after that I had worst symptoms 😫. Took 4 moths to recover then pbc diagnosis.

My dad and aunt had m.s. no problem asking thanks.

Yes everything seems so crazy theses days.

Nelly

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Mmmmm.. That's interesting. I had some virus or something back in Feb 2020. Had to go on nebuliser in doctors as I was really wheezing. After that felt off for months really. Tired and just not myself. Then in nov/Dec just gone had terrible tummy troubles.. Bloated and tender tummy. Kept going loo. Then like crashed. Just felt so ill. Shaking and weak. Had blood test and enzymes through the roof... That's how it all come out about pbc and autoimmune hepatitis.... Just wondering if I've had covid twice!!!!! I just feel floored. Anxiety creeps up alot. Trapped in house. Not exercising much.. Which can't be good. Still have the pressure thing in ears but doctor thinks it's sinus blockage??? Got nasel spray for it. Just confused hun. Anyway... I'm going to give you my number. There is no pressure to use it.. I wouldn't do that.. I'm not pushy person atall. Just there 07496142612.. I'm happy to chat on here but anytime u want to talk I'm here xxxxx love traci xx

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Hi thanks very much, appreciate that. Please God we get a handle on our symptoms. I'm just recovering from sinusitis and it has completely floored me again. I have chronic sinusitis and had 2 surgery's in the pass for nasal polops. Was doing well until early 2020 now it's bad again.My ENT dr. says polops are back so I'm on steroid drops for this.Go I'm moaning big time.

God bless you too🙏

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Lol hun you can moan as much as you like xx I'm here to listen. I like helping people and I know how important it is to get things off your chest. Better than bottling up it all inside. That's not healthy... Hosestly vent as much as you want to hun... Maybe I have sinusitis... Maybe that's what the ear thing is. Maybe I'm looking too deep into things which I've been known to do all my life.. The dreaded anxiety!!! We can be here for each other to talk things through. So comforting having a friend to chat about things xxx love traci x

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Yesxit is great to chat, thank you very much. Take care Traci×

Lagathavikings profile image
Lagathavikings in reply to Nellies47

And you nelly. Xxx 👍

Lagathavikings profile image
Lagathavikings in reply to Lagathavikings

Hi hun. Was just wondering how you was doing xxx love traci xx

Lagathavikings profile image
Lagathavikings in reply to Nellies47

How you doing xxxx

Nellies47 profile image
Nellies47 in reply to Lagathavikings

Hi. OK thanks, and you.

Lagathavikings profile image
Lagathavikings in reply to Nellies47

Hi. I'm not too bad thankyou.. Glad your OK xx

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