So frustrated

[Amore55]

As most of you know, I had a wicked relapse from August to January. Well, last week I was unable to get out of bed, hubby had to come home to get me to the bathroom. I called my neuro, of course they said let's see how long this lasts. Well I have been in bed four out of the pst seven days. So now the neuro has decided I am in a relapse again, wants to see me in a month. He said I may be spms. We'll see. I just hate this monster. I have stuff to do in this life, I can't be laying in bed because my legs won't hold me up.😖 Sorry just need to vent, I know we all suffer. Love and appreciation to all. Kelly

[jimeka]

Kelly, what are we going to do with you? There I was thinking you were still caring for your neighbour, so now I know the ms has took another go at you I can start praying for you. Spring is here, think of all the pretty flowers, the lambs skipping in the fields, the new bunnies running around, and beautiful thoughts. Then when you run out of good thoughts, start kicking the ms into touch. Blessings, prayers and hugs, Jimeka 🦋 🌈 🐶 🐾 💐 🍫

[Amore55 in reply to jimeka]

Jimeka, I am still caring for my friend, she still has her drain tube in her side, it has been since feb. 13th. But they won't take it out until she quits draining so much. So I go every other day to change her bandage. She is the best medicine! We get to laughing like two 13 year olds! I never thought my best friend would be a 78 year old woman. Thank you for the lovely message. You are so dear. 💕

[erash]

Amore55 so sorry to hear this Kelly and sending you wellness wishes 📬

SPMS is usually a downhill slope, not necessarily freq. relapses, right? Why did the neuro think SPMS ?

[Amore55 in reply to erash]

Liz, the reason he thinks that is because I have never really "gotten my legs under me". 😜 Even after all those steroids, both IV and a 12 day follow up oral, I never quite kicked the "relapse". I have just continued to get by with lots of bad days. My husband is at his wits end to know what to do. He works long hours as a Director at a drug treatment facility, then comes home to deal with me. He is marvelous, cannot do enough for me. Thank you for you well wishes.

[karenmbloom in reply to Amore55]

It doesnt mean steady decline. I have been considered stable in secondary for nine years now. Legs never came back after major attack in 08, but all else did, including blindness in one eye. Prayers ascending for your relief.

[Jesmcd2 CommunityAmbassador]

My question is, and maybe you can answer erash if Amore55 is in a relaspe, why don't they do a steroid (solumedrol) treatment?

Jes🌠

[Bygonelines in reply to Jesmcd2]

Unfortunately, Kelly has had the steroid treatment in the past, and it hasn't helped. So I am guessing that is why they are not doing it this time.

[Amore55 in reply to Bygonelines]

Hi Jacqui! You got that right about the steroids! Love, Kelly

[karenmbloom in reply to Amore55]

did they try athcargel....

it's old but reliable after steroids don't work. helped me once.

[erash in reply to Bygonelines]

also...I think Jesmcd2 ...steroids might shorten durations (for some? Not my experience) but they don't necessarily alter the course of disease.

Amore55 et al.Even with RRMS, people don't typically go fully back to baseline or their norm after a relapse.

There is cumulative damage that they might initially compensate for and feel like they've returned to norm.

But eventually, we can no longer compensate and the damage becomes more apparent --feels like a continuous relapse and perhaps that's when they say you've crossed over to SPMS?

[CalfeeChick CommunityAmbassador in reply to erash]

Steroids only slightly reduced my symptoms, I wouldn't do them again.

[Jesmcd2 CommunityAmbassador]

Amore55 ~hugs~ feel better soon!💕🌠

[Amore55 in reply to Jesmcd2]

Jes, thanks for the hugs, you are always a sweetie, you wise woman! Lol

[Jesmcd2 CommunityAmbassador in reply to Amore55]

Amore55 at least you didn't put old in there! Thank you!😅💕

[Morllyn]

Amore55 Sorry! It seems that if you are in a relapse you could get in to see the doctor right away! Then again, if we have spms it is kind of like we are always having an attack, kind of. Frustrating!

[Amore55 in reply to Morllyn]

Morllyn, that is exactly what it feels like, like I am always having an attack, with no let up. It IS frustrating, isn't it? There is so much to do in life and it seems that ms robs us of o much. I know we can still find the positive, and I know that I am very blessed in so many ways. Thanks for your comment. Kelly

[Bygonelines]

Kelly - I hope you get to feeling better soon.

[WAshingtongirl]

Amore55 , this news saddens me. Here I thought you were busy getting your bike assembled and maybe getting in some practice rides before posting a new picture. I guess I was really wrong. ☹️ When do you see your neuro, Kelly? I hope you are being squeezed into the first available appt. I also wonder if your new DMT might have something to do with it? Maybe it's not a true relapse but a reaction to the med? Your doctor should be checking on all possibilities. Will be praying for your immediate relief as well as long-term answers and improvement to your care. Sending you a hug. 💐💓

[Amore55 in reply to WAshingtongirl]

Tutu, I think the med (Tecfidera) and I don't get along. It makes me feel weak, and have a very upset stomach. I only had the one flush experience, but took aspirin after that and didn't have any more. My bike IS getting assembled tomorrow, it rained Tuesday, but can I ride it? I will post picture. I have had two decent days now in a row, so that gives me a lot of hope. Thanks for the hug.

[jennie62]

Amore55 Prayers and thoughts go out to you!

I'm with WAshingtongirl I too thought you were assembling your bike and going on practice runs. MS really stinks, but you're gonna show it who's boss! YOU ARE!

Jennie

[Amore55 in reply to jennie62]

Jennie, thanks for your positive message! I will show it who's boss, you are right! 😀

[jennie62 in reply to Amore55]

I admit everyone here has taught me to be positive and you're one of them. The least I could share...I know you're going to do well and you can do it! : )

[SueAB]

Kelly, Sorry that you have hit a rough patch. I can relate to the leg thing. I can swim like a fish, trike with the best of them, but I cannot walk without a cane and sometimes my walker. I know how discouraging this disease is - I have endured it for 30 years and the good times will eventually follow the bad. DEGU - Don't Ever Give Up!

[Amore55 in reply to SueAB]

Sue, it is good to hear that you can still do so much. Your words and actions really cheered me up, thank you. I love your saying DEGU. I will use that! 😃 Thank you for your kind words. Kelly

[CalfeeChick CommunityAmbassador]

Hi Kelly, we've been missing you. So sorry to hear what's going on with you. Do you have family or friends that can assist you for a while? Keep us posted as you can. Here's some spring flowers for you. 🌸🌺🌸🥀🌷🌹🌷🌸🌺🌷💐🌹🌷💐🥀🌺🌸🌸🌺🥀💐🌷🌹🌷🌺🌼🌸🥀🌹🌺

[Amore55]

CalfeeChick, thank you for the flowers! I do have family here, after all I had 8 kids 🤣. Plus I have three great stepchildren. I need to be better about asking for help. I am so independent, stubbornly so, and that does me no good. I will work on doing better. Thank you for your concern. Kelly

[Raingrrl]

Hi Kelly!

Vent away! We get it and can easily put ourselves in your shoes. I hope your neuro is wrong and you haven't moved from RRMS to SPMS. M.S. is so frustrating, isn't it? I get annoyed when I can't do the things I want or need to do. Take care!

[greaterexp]

Kelly, it's all been said in other posts, but I'll add how sorry I am that you've been struggling. I'm praying for better days ahead and that you will not only have plenty of help, but won't feel bad about utilizing it.

You're a wonderful cheerleader. We are all cheering for you!

[joys-an21]

Hi, Kelly! As so many others have said so beautifully, I am so sorry you are struggling again. How true it is that bad things happen to good people. Try to allow yourself to rest while you are confined to bed instead of worrying yourself half to death over something you can't change right now. Come here often and vent when you need to. And then stick around and offer the kind of support only you can give. Take very special care....you are very special to a lot of people. Hugs! Joyce

[Eleyne92]

Amore55 So sorry you're having to deal with another vicious bout with the MonSter. It's so disheartening. I'm glad to hear you're able to help your neighbor, though.

Take care, do what you can. My thoughts and prayers are with you.

Eleyne

[karenmbloom]

Amore55 Here you are asking about me when you are having such a hard spell as well. So much is unknown and I'm a girl used to answers. OK, 56 yr old but still a girl You are blessed to have hubby to help. I have aids come in am/pm as I'm dependent on w/paraplegia. But life is good and full. Adapt, accept and then do it some more, right? My dad is 86 and live w/me. We take care of each other, have the health aids and my adult son lives less than a mile away. Busy w/work and new baby but he finds time to help alot and his wife is understanding. My prayers are ascending for your relief.