Here I Humbly come - Shingrix

[Karen-x]

Hi All. I know it's been a long time, for those of you that even remember me. About 18 months ago I posted how I had been healed from MS. And I praise God everyday for that. Two weeks ago I got the Shingrix vaccine for shingles. One week ago, I woke up with cog fog. Oh, that dreaded familiar feeling.....😠. Fatigue has started to rear it's head and now I'm having trouble breathing well. Off for an MRI next week and a fluoroscopy sniff test. Anyone ever had one? I'm pretty sure this is from the vaccine. I hadn't had one bloody MS symptom in 18 months! I

I'm so glad to have this place as a resource.

Karen

[Karen-x]

Oh yeah....and I'm back to constantly dropping stuff.

[Peruzzot]

I went almost 4 years without any symptoms. Then BAM! Got hit with massive memory issues. They've improved since then but I'm still not back to the before level I was at. Very frustrating. I have days where I drop stuff a lot and others where I don't drop anything. I've got a ruggedized case for my phone to protect it from me. So far so good.

What is a fluoroscopy sniff test?

[Karen-x in reply to Peruzzot]

Hi. Thanks for the reply. Wow, four years free! That’s awesome. But I’m sorry it ended. I’m frankly sorry mine ended. 🤕

A sniff test is where they put a scope of some kind down to see how my diaphragm muscle is working. I’m not sure it’s worth doing. My trouble breathing does not happen all the time and what are the chances it would be “malfunctioning “ at the moment they do the test?

[anaishunter]

Hope this is not a major flare-up and that everything will be back under control quickly. Good that you have test, MRI and doc appt lined-up.

[Karen-x in reply to anaishunter]

Thank you.

[greaterexp]

Hi, Karen! We've missed you, but are glad that you've been doing so well! Immunizations can stir up our bodies' immune responses so we can feel like we're having a relapse when we aren't. I'm glad you're having the MRI to make sure there aren't any new lesions. Please keep us posted about what you find out and how you're doing. I'm sorry you're having symptoms again, but pray that they are only temporary.

[Karen-x in reply to greaterexp]

Hi sweet lady! Thanks for the reply and prayers. They are always appreciated. I’m confident the symptoms will be short lived! That’s the best attitude I can have. I told my doctor that I was healed and he said, I believe in healing but your aren’t healed yet! 😜

[jimeka]

Hi Karen, I have missed you and often wonder how you are keeping. Sorry that the familiar symptoms are rearing their ugly head again. I have never heard of that test, so let us know please what it is and how you get on. It could be that the shingles shot you had as knocked your immune system but hopefully you will be back to normal soon. Praying for you blessings Jimeka 🙏 🤗 🍫

[Karen-x in reply to jimeka]

Hi beautiful! I see you are as sunny 🌞 and wonderful as always. You are such a blessing to this group of people, and me personally. I’m not really sure I’m going to go through with this sniff test. They put a scope down your stomach to see how your diaphragm muscle is working. I mean, what are the chances it will malfunction right at that time? The issue I’m having isn’t constant.

[SueAB]

I had both doses of the Shingrix vaccine with no reaction. Hope you get back to feeling good soon!

[Karen-x in reply to SueAB]

Thanks!

[Frances_B]

The Shingrix vaccine won't cause a relapse, although it can make you feel like absolute crap. With some vaccinations and other day-to-day illness like colds etc people can sometimes experience what is called a "pseudo relapse", where symptoms seem to flare up but it isn't actually a true MS relapse - it just feels like one. Truth is that your MS wasn't "healed", you were just in remission, and that is the way Relapsing Remitting MS goes. There are quite a few people who claim that this diet or that homeopathic remedy or whatever crazy thing they found on the internet "cured" their MS, but sadly they are just fooling themselves (or being fooled by people with vested interests being served ). MS does what it wants to do when it wants to do it, sometimes encouraged by us overdoing things, and hopefully mostly held in check by medications (for those who are on them), but at this time no-one is ever actually "healed". Good luck with your tests, but if you are having a pseudo relapse everything might well just settle down by itself.

[goatgal in reply to Frances_B]

Frances_B Karen-x The clinical term pseudo exacerbation is insulting to anyone who suffers a relapse shorter than the arbitrary length set for a true exacerbation. I'm not fussing at you but at the terminology used by clinicians. A symptom is a symptom is a symptom. My pseudo exacerbations may not last as long as the true exacerbations of others but they are true to me and affect the quality of my everyday life. You are correct in nothing that MS remission may feel like a cure; I have not had a true relapse since my diagnosis, yet my MS is still there. Everyday. Insidious. Unpredictable. The old lesions are still present on the MRIs.

[Frances_B in reply to goatgal]

Goatgal - I can completely understand where you're coming from with saying that the term "pseudo relapse" can feel insulting to someone to is experiencing one, but I can see the clinical point of view as well - if there is no actual inflammatory activity with lesions then the prefix of pseudo is appropriate as what is happening is not a true relapse in the clinical sense. I think the problem comes with the fact that many people use pseudo only to indicate "sham" and forget that it also means imitation, which is exactly what a pseudo relapse is doing - appearing to be like a full clinical relapse. And you are so right - MS is a bad housemate who once they have moved in refuses to ever move out and never goes away, even if they are sometimes hiding out of sight in the garden shed..

Underlining in this definition is mine:

The prefix pseudo- (from Greek ψευδής, pseudes, "lying, false") is used to mark something that superficially appears to be (or behaves like) one thing, but is something else. Subject to context, pseudo may connote coincidence, imitation, intentional deception, or a combination thereof.

[Karen-x in reply to Frances_B]

Thanks for the reply. I appreciate it. I was aware it’s whats called a pseudo relapse and I agree w @goatgal it doesn’t feel any different. It will be nice to see on an MRI that it’s pseudo.

[goatgal]

Karen-x Thank you for posting. I had the first/original shingles vaccination but decided not to get the current version for just this reason. After a negative reaction to the senior flu vaccine, I am leery of anything that will interact with my already challenged immune system.

[Karen-x in reply to goatgal]

Now I gotta figure out if I’m gonna have the booster. I probably will. Having seen both my parents go through it and my Dad almost lost his vision

[Juliew19673]

I have had alot of friends and family push me to get the shingles vac, but as not 1 of them has MS I steer clear of their suggestions, but then my older sister came down with shingles, our mother had bouts of it and thought about getting it, but havent... Now after your post I'm not sure which would be worse?

[Karen-x in reply to Juliew19673]

I have been contemplating the booster that’s required. And I think I’m still going to get it. If this is a pseudo relapse I can handle that not to have shingles. My dad almost lost his vision and my mom had residual nerve pain for over a year. I DONT want that.

[Frances_B in reply to Karen-x]

I agree - it's a wise move to get fully immunised against shingles. My doctor warned me the vaccination could make me feel REALLY bad for up to a couple of weeks, but she assured me that would be the lesser of two evils - she said "you REALLY do not need shingles on top of all the rest of what you're putting up with". Murphy's Law ruled - I sailed through the shingles vax with only a tiny little red patch on my arm, and it was the 23 strain pneumovax one that knocked me about.