AND NOW ANOTHER RELAPSE

[Sukie427]

As you all might have noticed (or not) I had to quit posting again. I had a relapse last week--not just a flare, but a real relapse that required a $40k vial of Acthar injections and has left my legs and hips in so much pain I don't know what to do. I have been trying to exercise to start coming back again but the pain is so horrible I can barely walk and I can't move at all without my walker. I have my brain, C and T spine MRIs this coming Thursday and then I see the neuro next week. Wonder if they'll show any progression...am hoping not. Hoping all is well with everyone else.

[Royjr]

Sorry to hear about your relapse and I hope you feel better soon

[Sukie427 in reply to Royjr]

Thanks, Royjr .

[bxrmom]

Sukie427 I'm sorry to hear you had another relapse and are in so much pain. I hope you can get some relief soon.

Jessie

[Sukie427 in reply to bxrmom]

Thanks, Jessie.

[Sukie427]

I have no idea and calling my neuro is a joke. Just taking Tylenol (which doesn't work so I am going to stop it) and trying to cope. Will let you know about the MRIs.

[Ikeeptrying in reply to Sukie427]

How can they tell you to just take tylenol? I'm blown away and so sorry. If it's too bad go to the ER. Maybe they can give you something that will help.

[Sukie427 in reply to Ikeeptrying]

Actually, I decided myself to take the Tylenol because with all the injuries I've just had it with narcotics. I have been sporadically taking medical cannabis but for some reason it's making me loopy which it hasn't done before. So I guess I'm just going to plow through until I see my neuro. If it really gets horrible, I'll probably go back to the cannabist or if I'm really desperate 1 Vicodin.

[Muchomonty in reply to Sukie427]

Have you tried Baclofen?

[erash]

Sending you well wishes and hope u feel better soon 🙏🌈

[Sukie427 in reply to erash]

Thanks, erash .

[greaterexp]

I’m saddened to hear this news. You’re in my prayers with hopes for quick relief from this pain.

[Sukie427 in reply to greaterexp]

Thank you so much. Greaterexpectations.

[Jazzyinco]

Oh Bless You Sukie, i am so sorry😪 i hope & 🙏😻All goes well w/the neuro.. My Deepest Prayers are w/U!!🙏🙏💜❤

[Sukie427 in reply to Jazzyinco]

Can't ask for more than that, Jazzy

[kdali]

I'm sorry you're having so much pain. Lots of love to you ❤️

[Sukie427 in reply to kdali]

Thanks, new mama! Hope you, Dad and little one are all doing well!

[kdali in reply to Sukie427]

We are, thank you! 😘

[Kenu]

Best wishes and hope you get feeling better soon 🙏🐾Ken

[Sukie427 in reply to Kenu]

Thank you Ken.

[jimeka]

Sukie427 well I never? Can’t leave you alone for two seconds. Here I was thinking that your husband had whisked you away on a birthday treat and I was expecting a post on your travels, and here you are in such pain. I am so sorry, all I want to do is give you a big hug and say it will all be alright in the morning, but in the world of ms, we know differently. Don’t suffer too long, I know a lot of us on here grin and bare it, but we can only take so much. Unfortunately the extra winkles in the face is a tell tale. Please Suki, get help in any shape or form to give you the relief you need. Let us know how you get on with your mri’s . You are in my thoughts and prayers. Did you see your birthday post? Blessings Jimeka 🤗 🍫 💐 🌈 🦋

[Sukie427 in reply to jimeka]

Thank you my friend. Today seems to be a little bit better, but the dogs decided to have accidents in the house overnight and my husband and I both had to clean up the mess. I got so mad at them I threaten them that if they did it again they'd be moving to a dog house in the backyard with no air conditioning, no couches and no cable TV. After I go on a tear like that I usually do get a couple days where they don't mess, but they're getting older and one has advanced kidney disease so I'm not sure that they can help it, but some days I just don't care. I'd rather get it out and feel bad later. I am going to the therapy pool to try and get my legs going. Don't know how it will affect things but you know my mantra, just keep moving. Thank you for your birthday wishes, I'm sorry but I didn't see the post. Hard to wrap my head around things these days. Hope you're getting on well, I miss talking to you. One of these days we're going to get over 2 England and I certainly hope that will be able to meet in person. Much love blessings to you also for good health, Suki

[jimeka in reply to Sukie427]

Whenever you are ready, just say the word. You’ve been before though haven’t you? Have a good weekend, being away with friends might help take your mind off the pain a bit. Hope the hot salt bath works, blessings Jimeka 🦋 🍫

[Sukie427 in reply to jimeka]

We were in London and the Cotswolds but that was in the 80s. I had to go to Ireland in 2011 for a case and ended up locked in a hotel room in Bre with a psycho client for a whole week while my husband went sightseeing. I think i got the bad end of that deal!

[jimeka in reply to Sukie427]

Next time look me up, I am near York. For some reason you Americans love it, lol 😂. On a different note, York is a beautiful city, full of history. I hope that you feel better soon. 🤗 🍫 💐

[Sukie427 in reply to jimeka]

We do want to come back to see the things that we basically missed the first time, which is basically the whole rest of the country. We want to go see the Lake District, the Moors, Liverpool, Brighton and the Channel Islands Etc. I have a friend in Florida whose son married a woman from York and they lived there for a while but I think they've now move down to London for their careers. When we were there in the 1980s, We Got This brilliant idea to rent a car and drive to Edinboro Scotland. Unfortunately, I never have known how to drive a car without an automatic transmission, let alone on the wrong side of the road. I know it's not wrong to you but it's wrong to us! We managed, with my husband driving, to finally get on the motorway when I noticed that we were going south instead of North because I kept seeing signs to Brighton. When we tried to get off and go the other way, he went right instead of left at the roundabout and nearly wiped out 15 cars! After many hours of getting nowhere, we took the car back. The rental agency was very grateful as they said that most Americans just abandon them on the side of the road! It wasn't funny at the time, cuz we almost got killed more than once and took some nice English people with us, but since nobody was hurt it's pretty funny.

[Muchomonty]

Hang in there, prayers are with you

[RoseySawyer]

I hope you feel better soon.

[Iona60]

Uggg. So sorry that this has happened again. Prayers for a quick recovery.

[Momjules]

Feel better

Prayers for you!

[Kitsey]

So very sorry that you are dealing with so much. Praying that the pain ends quickly and the MRIs don’t show anything new🙏🏻

[Sukie427]

Thanks so much for all of you for your good wishes and prayers. I'm trying to work through the pain and hopefully it will be on its way soon. Wishing you all the best of health.

[Babslover]

Sukie427: I had a relapse before and had to go to the hospital. I hope you have help if you need to go to the hospital. Be safe. 🙏

[Sukie427]

Thought about it but my doctors hospital affiliations are all in Phoenix over 2 hours away and the only thing I'll do is fill me up with painkillers which I don't want. Just going to the therapy pool see if I can get some relief from the hot salt water and just moving my legs. We are planning to go away for a restful weekend 2 Best Friends Animal Sanctuary in Utah to meet up with some friends. If that doesn't work, I'm calling my doctor on Monday when I get back although I don't know what else there is to do since I've already taken the Acthar. I seem to have stopped sliding downward, but I just can't seem to get rid of pain in my hips in my legs, and the fatigue is killing me. Don't think there's anything else to do but to keep on keeping on.

[CraigS]

I’m so sorry about your relapse. I’m at a loss for words. I hope your going to be able to bounce back. Stay strong.

❤️❤️❤️

[MS_Indestructible]

sorry to hear of the problems you are having, hope they can find you some relief. You have my love and support and I'll keep you close in my thoughts and prayers ~terry

[Peruzzot]

Sorry to hear you're in such pain. Hope you feel better soon and that the therapy pool helps.

[hairbrain4]

I just saw this post. Sorry you have been in so much pain. I know you don't want pain meds & I don't blame you. Can you take Alieve? It's naproxen which really helps me with pain. It's all I ever take. I do have to take Prevacid to prevent ulcers becacuse I take 500mg 2 to 3 times a day. It really helps with inflammation and settles the nerves down that have gone crazy at the time. Hope you are feeling better.

[Sukie427 in reply to hairbrain4]

Thanks, hairbrain4 . My gastroenterologist took away all my NSAIDs because a migraine med called diclofinac killed my tummy. I was actually doing well on Advil Migraine until he told me i can't take it any more. Last night the pain in my legs was so bad i took it anyway, and it did help. I am actually on protonix every morning and zantac every night so that probably helped.

.

[hairbrain4 in reply to Sukie427]

Have you tried Carefate or Sucralfate for your stomach? I also have to take it 4 times a day. It does wonders. It keeps the stomach coated so meds don't kill it. You have to take it a couple of hours before you take other meds but it keeps my stomach from looking like swiss cheese. It also helps with acidic foods like tomatoes, citrus & carbonation. I had ulcers several years ago & started taking it then. Just had an EGD & the ulcers are gone, even with taking the 500mg of naproxen 2 to 3 times a day.

[Sukie427 in reply to hairbrain4]

I remember years ago hearing about Carafate, and I never thought to ask now that I take so much medication for the MS, migraines and the depression. I see my gastro next month and I'm definitely going to ask him about it. Thank you, Hairbrane4!