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How long do your relapses last

well I am 60. have had ms since 41 and am in the middle of the worse relapse ever.. I am hoping it will resolve. I have only had 3 episodes before and this is the worst ever..I am all alone and struggling. Paresthesia in fingers and feet is horrid and have severe I guess MS hug.. I am wondering how long these symptoms have lasted for others. My previous relapses all resolved within a week this started Christmas day and still going on.. I am so depressed yet my neuro seems nonchalant about it.. did a Prednisone Taper which did not help so she ordered Gabapentin which is not helping at all. Guess I am asking how long the average relapse seems to last?

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Hello rioplayer sorry to hear about your relapse, hope you see improvement soon.

My recent relapse started mid Nov and while the leg weakness has improved some, the numbness is still spreading and getting "deeper". For me it seems relapses last for many months and then I am left with all the new symptoms which occurred during that time, they may lesson some, but never go away.

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that is so scary for me living alone.. im not sure i will be able to stay in my home is this stays

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I’ve bern in what I think is a relapse by all standards since late November but like your dr mine doesn’t seem to concerned. He doesn’t seem to believe in steroids just in ordering MRIs. So I continue to suffer with new symptoms as well as worsening of old ones. If this mri doesn’t show something me and him are going to have a confrontation.

Good luck and God bless

Donnie

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i am sorry you are also going through this.. it is such an awful disease. we can take care of ourselves all our lives to prevent the obvious diseases. eat right, exercise, no smoke, no drink, etc.. and this disease comes out of nowhere and wipes us out without rhyme or reason.

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rioplayer . I go back for mri results Jan 31st and if I’m not better new lesion or not we are gonna have problems if he doesn’t give me some help. And I will be finding a new dr.

Good luck and feel better soon.

Donnie

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Thank you rioplayer for your wise words, that good lifestyle habits will NOT stop this disease. All my life I ate healthy, exercised, no smoking, etc. but my disability keeps increasing. I both laugh and get angry at these supposed experts who claim lifestyle can change the course of this disease.

Your words are such a comfort to me and a reminder that I did nothing to bring on this disease. Thank you so much.

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Yeah we can't fight our destiny!!

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I Have always get steroid infusion so normally lasts about ten days Hope you get feeling better 👍🙏 Ken

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i just emailed my doc and asked if steriod infusions might still help this long after it stearted

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I believe my neuro told me they like to get the steroids started within 2 wks for the best chance of them working.. Hope your neuro gets back to you soon rioplayer

My first relapse, it took almost a year before the numbness stopped spreading. I wasn't given steroids then as I hadn't been diagnosed yet

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rioplayer My neuro jumps right on a relapse with steroid infusions, which he follows up with a dose pack. Even with all that, they sometimes last for 6 weeks. My worst one lasted for 5 months. I'm often left with some new residual affect. If things keep worsening, I'd call the neuro.

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Iona60 . I’ve been with my dr since April. This is my 2 Nd for sure relapse and no once a dose pack much less a steroid infusion. I’m just losing all the faith I originally had in him and that’s not good dr patient relationships hip material.

Donnie

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so sorry for you.. such a cruel disease and the healthcare field is so unpersonable anymore. we are like cattle being led to slaughter

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rioplayer . if they could only feel a MS hug for a few hours they’d change way of thinking and treating their patients I do believe.

Donnie

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Donnie, does your neuro specialize in Ms? My neurologist says inflammation causes plaques and plaques cause disability. He jumps right on the inflammation if I have anything that last more than a few days.

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He was referred to me by Emory University Hospital as a MS specialist but I’m really starting to doubt their choice. I’ve done everything except beg him for steroids. I don’t know if they would help but this episode has lasted almost 2 months now so what would trying hurt. I’ve seen him 3 time in the last 6 weeks. 2 Times his nurse brought me in without an appt because of my condition. Which hasn’t improved. 3 rd time he ordered my MRIs to see if my disease was progressing. If it is I would think a lot of time was wasted doing nothing. But who am I to question?😡🤬

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I had 2 relapses within 6 months on gilenya. Had an MRI each time with no changes. Neuro says that current protocol is to switch dmt s if 2 events within one year. I'm waiting to go on ocrevus.

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Iona60 . That’s one of the reason for this mri is to see if I need to switch. MRI in August was good which again I was going thru my first flare when he ordered it but it took over 2 weeks to get it. That time I was feeling better by then. But this ones been going on for 2 months. I’m just worn out.

Donnie

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My neuro switched me because of the 2 exacerbation s, even though the MRI s were unchanged.

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Iona60 . I think I picke a dud.

Donnie

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Just ask him what criteria he uses to justify switching meds.

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Iona60 . I also want to know what his definition of a relapse is. Mine and his are definetely the same.

I guess the MRIs will determine about switching dmts at least that’s what he said but it seems like he sometimes forgets his plans from one visit to another.

Donnie

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I think they don't really chat what they hear us say and to us..I know it has been that way with my knee and back pain problem that aren't related to the MS The electronic records are so check box that you don't get to be an individual..When they go back and look at their records. the checks don't always match. Gone are the dictated actual personalized care of days gone by. I can proudly say that I am glad i was a part of the medical field when I was but also glad to not be actively involved in it now. It has really deteriorated.

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Double51 I feel for you

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rioplayer . I think things are about to change one way or another. After I called and reminded them of the prescriptions i was supposed to be getting the last visit they finally called them in. That’s been a common occurrence . Depakote for headaches andCymbalta to add to gabapentin for neck and shoulder pain. So now just a waiting game for MRIs.

Sonnie

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I was taking Gilenya, was having a terrible time with all kinds of new syptems lasting months the same as you. Have you been tested for the JC Virus? I got to the side affect of Strokes. It wasn't until my last stroke that my left side went numb and face was drooping and speech was not clear did my husband understand what I kept trying to tell him. I'll shorten' my story, my Neuro wanted to keep me on the drug, left his office in tears and stopped the drug. He told me to stop reading the list of side affects. I am SPMS, all syptems started going away slowly. I take 1 -20mg Baclofen,2 -10mg Valum at night. I am not ready to jump into MS meds, there was not one that I did not have bad side affects with. Good Luck. Forgive my spelling.

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you are right to question.. thankfully, my neuro trusts me to tell her how bad off I am and was willing to try the solumedrol since the prednisone taper didn't work.. but from what i've read, the steroids only help you get through the relapses easier.. they don't change the amount of damage or disability resulting from a relapse. And there are never any guarantees that we will get anything back..

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rioplayer . Help through this never ending downhill fall is all I’ve ever wanted from him. I know he can’t work a miracle but a little temporary help sure would be worth trying. At least I think it would be. I’ve been dragging so long I’ve got callouses on my butt. I just won’t waste another trip to him for nothing. 3 trips in 6 weeks for nothing is enough. 200 miles is a long way when it’s all you can do to walk to the bathroom. I’ll do my MRIs on the 23 rd then my follow up the 31st and go from there. At least that’s my plan.

Donnie

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hey. even two weeks out it is helping.. see my edited response above.

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rioplayer . In this case it’s almost 2 months out and will be more before I’m thru with MRIs the another week for results. I pray i doesn’t last that long but no signs of slowing yet. I’m at least 6 or7 weeks now. But unless things get totally unbearable I’m not wasting my time and gas for nothing.

Like everybody else my insurance deductibles and copays start over. So now I can be relapsed and broke🤪😂.

Had modafinil filled yesterday that was good for $80. Just got a text that my dr called in something either cymbalta or depakote or both and til I reach def insurance doesn’t pay anything. Pain meds both due next week.

I can’t even imagine what copays for all 3 MRIs will be.

Happy New Year everybody. Deductible time is here.😅😅😅

Well I’ll quit complaining now. At least for awhile.😇😇😇😇

Donnie

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hey MSAA will pay your copay on one mri of your brain every other year.. not other parts of spine...there is an application online that is easy to fill out

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rioplayer ill check it out. Thanks

Donnie

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Hope u feel better soon rioplayer

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thank you all for your support

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Sending lots of love to you. Really hope you start to feel better soon 🌈 x

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Ask for a higher doesage with the gabapentin. They can up it. The nerve pain in your hands my go away. Mine didn’t. I take lyrics for the pain (I’m allergic to gabapentin). My hands hurt most of the time but with medication it’s bearable. Make sure you never miss a dose I have before and I thought I was going to die. My nerve damage is permanent. I pray yours isn’t.

As far as the MS hug. I have it every so often. Sometimes several times a week if I’m over tired.

I hope this helps and that you feel better soon.

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My last and worst relapse lasted for a few months. :( It started with numbness in the feet, and progressively got worse. I felt that my family physician did not listen to me at all- in fact I went back multiple times during my relapse as it continued to worsen to the point that I had to have others step in to help out and take care of my little boys. My doctor kept putting me on prednisone as well, with no relief. After going to the ER multiple times, I was finally admitted and a neurologist ordered an MRI and I was given solumedrol (I'm sure I spelled that wrong). I was in the hospital receiving that by IV for 5 days, and then found at least some noticeable relief. It seemed like an eternity, but at least there was an end. I hope you get relief soon! If you have any other questions, please ask.

And I also choose a new doctor, one that actually listens. Make sure you feel like you are being listened to- if not, find someone who will.

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yes i sent another email. the numbness is spreading now my whole bottom of foot now and higher up in my back. it is scary. i live alone.. asked my daughter if she could spare some time saturday to come up and help me out..she lives an hour away. un married etc.. and a no go..having trouble even dressing.. wearing long pants without underwear.. can't get a bra on because too painful.. it is awful..and this is def, worse relapse i have ever had

.

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I'm very sorry you are having such a hard time and being scared. Hopefully your doctor and daughter will help more! I now only wear maxi skirts. In between knee and ankle. Much easier!!! And I wear a front clasping bra. The kind with three hooks not the kind with one clasp that you have to mamuever.

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I am 57 and I have known I had MS since I was 25. I am now disabled and having a colostomy surgery in 2000, and I can say each attack seems to last longer and longer. The best thing I ever had was a Calmare machine. I hate taking drugs and this machine only works with neuropathy pain. For me the two Calmare machines are no longer where I live and I have to go to SLC if I want that treatment. The guy who did accupuncture also moved so even though that helped I have to now run to Park City for that treatment. The steriods since I came down with MS have damaged my liver and my most recent MS drug because I have tried them all was Ocrevus. I can say the chemo did not help and in fact it caused me more harm then good. Get with yoy nueroligist and see is he/she knows where you can get accupuncture or use the Calmare machine. The chemo was my last attempt at staying somewhat mobile but even though every neuroigist tells me I should not be able to walk with the damage on my brain and spine I refuse to just accept that life. I work hard daily to keep going and I am working thankful every morning even though I can't feel my feet or hands that I get up and walk. Never say did and be thankful for everyday you are alive even if it is only an quarter of the good life you are used too. After 33 years fighting this disease I am still not ready to call it quits.

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well everyone.. the doctor ordered 3 days of iv steroids for me.. BUT now getting insursnce set up as to where to get it is a problem.. medicare kind of sucks

preferred providers

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the first time i ever went on iv solumedrol, had a good relationship with my neuro.. he just ordered the drug.. I am a nurse and got it through hospital pharmacy. I started my own IV and administered it myself for 5 days. cost me about 25$. they won't let you do that anymore.. dang those federal regulations

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Infusion 1 went well only one stick for IV. Only painful part is I put socks and shoes on for first time since Christmas for 3 hours. Skipped the bra. No way I could have fastened it.. Quite painful. hope this helps. thanks to all of you for your listening ears, encouragement, and support.. Now it is next morning and the fingertips on my right hand do not hurt when i type. nothing else has changed, but i think at least it didn't get any worse. i wish they would go straight for the ivs instead of prednisone.. i know their "studies" don't support it, but seriously, I think that it does reduce the severity of an attack and amount of residual damage.

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rioplayer . I so happy your doc listened to you. I pray the iv steroids help you greatly.

If I was a few thousand miles closer I’d have to check out your doc. I don’t think my can spell solumedrol😅😅😅

Good luck and God bless.

Donnie

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i have never ben this miserable in my life.. steroids for a month now and up 20 pounds and it is not all water! The only thing i can do without severe discomfort and enjoy slightly is eat and it breaks up the boredom o sitting in my chair all dsy

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rioplayer sorry to hear this, I hope you notice some improvement soon.

I still feel that I am in relapse despite Iv steroids end of Nov. I also have gained weight that I can't blame the steroids for... everything is such an effort...

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update.. saw neuro yesteday.. noting else can be done.. just have to wait and see what i get back. I finally figured out how to explain the pain in my hands. They feel like I went out in mid August and placed them on the middle of the hot asphalt street and held them there until they blistered up. So they feel like they are full of blisters even though to look at them, they are fine.

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