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Avatar universal

Third flare since october

So I woke up fine today.
I felt tired but okay.
Went and dropped my son off at pre school and felt weaker than usual.
Went to swimming class and noticed my legs felt heavy in the water.
This was unusual because I usually feel great in the water.

I noticed I wasn't okay once I was walking to my car.
I was having a lot of trouble walking to my car with both crutches.

I had my PT appt and by the time I got there, I barely could carry my weight.
The PT said that I was extremely weak.  The fatigue came over me like a blanket.

She told me she was going to call the neuro and that I should also.
I knew right away I was a flare.

That's how it happens for me.
I am "normal" and the I slide fast.

Needless to say I am starting ANOTHER course of solumedrol.
The third course in three months.

My concern is that my flares are getting worse and closer together.
I read about progressive relapsing MS and I think that might be my type.
I say that because with every flare I am worse and continue to worsen in between.

Either that, or I am never able to remit because I flare up to soon.

Any ideas?

This all started for me last April and the PT is already suggesting a wheelchair.
I am also being evaluated for OT and Speech next week.

Any words of wisdom will be greatly appreciated.

Thanks,
Kerri
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1394601 tn?1328032308
Kerri, the question on if steroids can cause the hip problem, I was told it would be rare for that to happen.  This comes from four different neuro's that treated me during my last relapse that took a good portion of my hips.  One day I could no longer turn to get out of bed nor could I turn myself to either side....My bad side (right) being worse.

My neuro told me that Tysabri is the stronger of all the meds available right now.  They (those in her practice) had seen some "miracles" with the drug.  However, it comes with great risks and shouldn't be used as a first line med.  My feelings is if you are on a continual decline, it is best to fight it with aggression.  

As far as which type MS you have your neuro will need to follow your progression along with your history to decide.  I think, too, often R&R is given to many when first dxed until the doctor gets a better handle on what is happening.

Remember, these are my experiences with my doctors.  Believe me I had plenty of people in my face saying steroids caused the hip problem.  I sure didn't need their nosy mouths running as I was in the hospital...the relapse being the worst I have had...unable to move, unable to swallow, my words sounded like baby lqnguage...So, stick with what  your doctors are telling you not with what busy bodies have to say.
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Avatar universal
Thanks for the info
I noticed that the last two times on the steroids after the first dose I was increasingly better.
This time after my first dose I am not better.

I was wondering If our bodies can become used to the steroids and they stop working as well.

I also noticed that in the last tow weeks my hips a re hurting.
I blamed it on Physical Therapy but do Yiu think it condo be from the steroids?  I also use crutches and I think that they are putting too much stress in my hips.  Walking is becoming more of a struggle and I am strting to look for a chair.

Anything I do is exhausting so a chair seems like the right choice.  At least for outside.  The PT said I have to usemy crutches in the house now and I am getting an AFO for foot drop.  This all started late last march so that I why I am thinking a different form of ms rather than RRMS.  It seems like I never actually remit.

It seems like I progress a couple of weeks after steroids and end up down again.  The fairs are sooner and worse.

This is the worst end yet.

Can you tell me why tsybari would be a good option for me?
I am not really familiar with it and would like to be armed with info when I see the neuro.  He want to see me after this week on the steroids.

I have been on copaxone for two months and have had a flair a month since beginning.  I know it takes time but at this point I don't think time is on my side.

Besides mobility I have other ms related problems.  The weakness is increasing into my arms as well.

Thanks for all of your help.

Kerri
Helpful - 0
1394601 tn?1328032308
Well, I think most on the board were aware that I was on IVSM monthly for ten months waiting for the Rebif to kick.  At the six month mark my neuro suggested Tysabri but I wanted to wait a full year.  (By the way, she felt Rebif was the stronger of all the shots).  My body managed to handle the steroids until about the tenth month when no could do anymore.

I never relapsed but felt like it would happen any moment.  That is when I would go in for steroids (every three or four weeks).  So, long story short they put me on Actar Gel which was suppose to last about ninety days in my system.  During this time I was waiting for 30 days to pass to begin Tysabri.  My body gave out.  I ended up in the hospital back on steroids (IVSM) for five days and as an extra bonus I got to stay there because my hips went out for another twenty or so days.

SOOOOOO.....If I had to do it all over?  I would get myself on Tysabri.  If I had I may not have lost my hips.  They are not as bad as when I entered the hospital but will never return to their former self.

Thing is...if...and that is an if....if it is Progressive Relapsing you will just continue to have relapses.  It could happen on Tysabri, too.  For me, myself, I am so hopeful.  For the first time in years I will say I am not sitting on the edge.

I wished I had done as my neuro highly suggested at the six month mark.  Maybe it is something that should be discussed..

And by the way, she feels the pill form of the DMD is not much stronger than the shots....Just thought I would throw that in...
Helpful - 0
Avatar universal
Shel:  thanks for the link.  I am going to read it now.

Lisa:  I do feel lucky that I can drive when I am not on the solumedrol.
Swimming is great but I am actually the only one not in a wheel chair in the class.  The have a chair lift that drops them into the water.

I have to get the cd from the hospital to post the pics.  All I have are the reports.  The PT is prescribing an AFO for my left foot.  I use two crutches now and will be in less danger of falling with the brace.

They are also having me evaluated for OT and Speech therapy.

This flair is the worst yet.  I extremely weak and fatigued.  I also have a lot of lower back pain that I never had before.

Thanks everyone for your support.
Helpful - 0
352007 tn?1372857881
Sorry to hear that you're not feeling well still.

Luckily you're able to drive your children around and swim!  That is a positive!  I can't believe you acquired drop foot so fast! That's totally amazing....What is PT doing for you for this issue?


I would be interested in seeing what your MRI report said when you were in the hospital!  Inquiring minds want to know!  If you have any pics that you can derive from your MRI CD that would be neat to see your 21 or wait...23 lesions and scars!  I'm going to be posting more of mine soon.

Please take care and keep up your swimming and PT!  

Lisa  

Helpful - 0
198419 tn?1360242356
Ker -

I think you will find this link with info informative. While symptoms from existing damage can be persistant, but it's not always progression.

http://www.healthline.com/health-blogs/perspectives-in-ms/multiple-sclerosis-attacks
Helpful - 0
Avatar universal
Thanks everyone.

Stacie:  I haven't talked to the neuro but he knows what is going on and wants to see me after the solumedrol treatment.

Deb:  I started the solumedrol in November.  They said it could take up to six months to start working.  But like I said, my mobility problems keep progressing so maybe I am in a continuous flair.

Shell:  yes.  My worry is all the lingering problems that are arising from the flairs or flair.  The damage is sticking and progressing.  My ability to do things has been drastically reduced and I know it's the disease.  I am just waiting to see it level off.  I guess I have a couple of more months to go.

Thanks everyone.
Helpful - 0
198419 tn?1360242356
Hi there,

Sorry for the relapse :( Deb puts much of this in perspective. It could very well be the same relapse, you felt some improvement from the treatment,  and the disease modifiers take their time to full effectiveness.

Early in the disease course is where relapses are more frequent. What you are experiencing now, may not be your ultimate immediate destination.

I know you are worried, but this is the best advice I can give because it's sadly the nature of this beast. Remitting is deceiving, because even with improvement from attacks, we can be left with complications from the damage.

Hope this helps,
-shell
Helpful - 0
429700 tn?1308007823
When did you start Copaxone?  Too bad that it takes a while before it kicks in there to help stop the attacks . . .  I was rolling around my house in my office chair and had a doctor's order for a wheelchair, then the progression stopped about nine or ten months after starting Copaxone.  

I think you very well could be having several attacks within a short period of time, but it could also be the same relapse which is being made temporarily better with the Solumedrol.  

Hopefully you are also telling the PT to take it easy on you.  Too much can make the symptoms feel worse.  
Helpful - 0
1523516 tn?1330044257
Will say a prayer for you Kerri!  What has the neuro said? Have you had a chance to talk with him/her?

Blessings
Stacie
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Avatar universal
Thanks.
Helpful - 0
1475492 tn?1332884167
Just a (((hug)))

I hope you feel better soon.
Helpful - 0
Avatar universal
The last flare started on 12/18.  Started solumedrol on 12/20.
Flare hit big today but the PT said I was weak last week also.
Helpful - 0
382218 tn?1341181487
How much time has lapsed between these three flares?  If less than 30 days then I believe it is considered to be one continuous flare.
Helpful - 0
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