Relapse/Steriod Treatment/Symptoms getting worse?

[sickinmo]

First symptom 'flareup' was in 1997. Bell's Palsey in 1999. Properly diagnosed in March 2000 with MS. Relapse in May 2007. Solu-medrol for 5 days. Face was numbing and right side of body was numbing. That got better. At the time, I could walk 'fine'. In November 2008, another flare-up.  Took Solu-medrol again. November 1st until around xmas time, I was 'recovering' from the relapse...never really felt 'better' like I had during the first treatment I suppose.  In June 2009, was my last flare-up.  I took Solu-medrol for 5 days again, and this time followed it up with Prednisone pills for 6 days straight, decreasing the dosage each day by 1 pill.  Ok, out of the last three flareups that I've had, this one has been the worst out of them all.  It's now the middle of August, and my flareup and treatment was June 18th.  I have increasingly been sleeping for 4-5 days straight, won't/can't get out of bed because I'm so weak and tired all of the time.  I was able to get up yesterday and today, but I've been up for almost 36 hours straight now, and while my body is physically tired and I'm in a great deal of pain, I'm not sleepy-tired still.  The pain in my lower half of my body is getting worse, with an increasing amount of numbness coming and going every day in different parts of my lower body.  I'm afraid to drive as I can't keep the correct speed on the gas peddle (noticing that I can't 'feel' how hard my right foot is pressing on the gas a lot of the times).  I have noticed over the last two days that my left foot drags occassionally as well.  Now, I'm seriously trying NOT to freak myself out over this and telling myself that it's only as bad as I make it, but honestly, I can't stand or sit for longer than 10 minutes at a time without being in serious pain.  And it's not shooting pains, it's almost like how someone feels after they've worked out, and it's been a couple days, and their muscles are all sore and the muscles are trying to 'relax' again.  But, the non-narcotic pain medicine that the dr. has me on, doesn't seem to curb the pain and neither does ibuprofen nor a warm shower.  I'm not sure what to do in this instance and I'm sure that the dr. will just tell me to come back to KC and see them, and then they're going to tell me that there's nothing that they can do for me.  I was reading online tonight that it might take up to 6 months for a person to get better after a relapse...but hell, is a person suppose to get worse??  Because I walk very very slow...like an 80-90 year old person would walk...I am only 31 and this is really starting to scare the heck out of me.

Also, I am on Copaxone and have asked the dr. what my other options are for medicine as I have had a hard time remembering to take my injections daily.  I have told the dr. that I do NOT want to be on Avonex again (tried that in 2000 for 2 years and I couldn't handle the side effects).  He has mentioned Rebif, Tysarbi(sp), and two others, one started with an "n", like "nova-something?" and another that started with an "s".  But I don't remember what either one of those were.  I have looked around on the net to see anyone has posted anything on the side effects or what they were on previously and why they changed the meds, etc, but haven't found anything yet.  

Any information and suggestions that anyone can help me out with would be greatly appriciated!!!  Thank you for reading my long-winded post!  

[sickinmo]

I spoke to a friend of mine tonight and asked him what PCP he went to.  Then he mentioned that there was a female PCP there in the same office since I am hesitant in going back to a male, and might be more open to a female this go-around.  I'm also calling my neurology office and leaving a message for them and explain what has been going on with me over the last month and see if they want to see me or if they will just tell me to continue to get rest, etc and not overdo it.

Back in March or April 2009, I had a lot of blood work done, also a urine sample. The blood work came back and said that I had low levels of: B vitamin, folic acid, Vitamin D, and calcium.  Also, as a followup, I had a urine sample taken. The first one was done in November 2008. The first urine sample showed that I had traces of blood in my urine.  The second one done in 2009, showed that I had protein in my urine.  The neuro said that this was nothing to be concerned about, but, I am concerned.  If I shouldn't be concerned, then I wish he hadn't told me, ya know?  Anyone know anything about urine tests and if/how/what it means when blood or protein shows up in the urine tests?

Ok, now back to the suggestions and questions that were asked:

Infections/PCP visit:  I'm going to try to find a female PCP to go visit.  I'll start making the calls tomorrow (monday) when I wake up.  

Pain:  I've been on so many different pain medicines...I have requested that my neuro only give me non-narcotic pain medicine as I am a recovering alcoholic and do not want to develope or start another addiction.  lol.  So, this limits what kinds of pain medicine I take unfortunately.  He did prescribe gabapentin to me, increased the dosage, lowered the dosage, and nothing seemed to help unfortunately.  As of right now, I'm on cymbalta and that medicine seems to be going so-so for me.

Sleeping or lack there of: I have always been weird when it comes to my sleeping patterns.  I was diag'd with sleep apnea last year, and have never really gotten my CPap machine to work right...it burns when the air/water force comes thru my nose. Have tried to get the prescription shop to readjust it and am tired of going in there and the guy isn't there when I have scheduled an appointment.  So as of right now, I don't use my CPAP machine.
I am on Provigil 200mg a day to wake up.  Unfortunately, it sometimes has a VERY weird affect on me and I will stay awake for 2-3 days straight without sleeping or even being able to rest.  So I usually halve those and I am up for 1-2 days straight instead.  I use to be on the 100mg a day, but it wasn't 'strong' enough for some reason and still i wanted to sleep throughout the day.  ok, so no balance with the provigil yet.
I was on Amatryptaline for awhile, but even with it only be 10mg dosage a night, I wanted to sleep and sleep and sleep.  Actually, almost all medicine, after taking it, makes me want to do nothing but sleep.  So, I think that's why I dislike taking pills so much....I have that fear that no matter what I take, I'm going to fall asleep.
I still occassionally take the amatryptaline, as I had when I was on the solumedrol and the prednisone pills after my attack so i could get a little bit of rest.  
I will mention to the new PCP about the adrenaline testing.  Hopefully they will go for it without too much fuss.

Hyper/Hypothyroidism:  I have been tested for both numerous times, and the neuro says that the tests come back fine and there's nothing wrong with my thyroid...

Anemia: also, he says that I'm not anemic.  I did ask him about my iron levels and he said that they were fine as well.

changes in medicine/course of treatment:  yes, the novatrone was the medicine I was thinking of.  the neuro had mentioned those medicines, and of course, at the time, I was only half paying attention and my mind was wandering, and i was tired and hurting pretty bad. (saw him the tuesday after I noticed symptoms on sunday).  

Copaxone: The problem that I have with it: I forget to take it daily. Also, the lumps that I have all over my body and the indentations in different spots and the discoloring of my skin.  Also, a lot of the time, the flushing and the light-headedness is a bad one for me too.  But, I do realize that this is the least side-effect medicine out there right now for MS treatment.  But, like I said, the biggest one is the fact that I forget to take it every day. But, I'm starting to get better, after 4-5 years of being on it. :P

Rebif: the only thing that I can tell with rebif that I have found is that I can take every other day but it causes flu-like symptoms as it mimics Avonex. (i have tried the avonex when i was first dx with MS, and had to get off of it after 2 years because of the side-effects).  I haven't read anything on the studies about if it can help reduce the legions or not or flare-ups vs. some other medicine or whatever.  The only benefit that I see to it is that it is a stronger dosage, yet lesser side-effects than the avonex.  Ok, so is there any other benefits to this medicine?

Tysarbi:  I have done some research on this, but since people with MS can only take it for 2 years and then they have to stop, what medicine do they turn to after the tysarbi?  Also, at what point do you decide to start taking that medicine?  Do people with RRMS start on the tysarbi or do you have to be SPMS first? or PPMS?

I did ok from Friday to saturday with sleep...slept for about 8 hours.  Then from saturday to sunday I slept about 8 hours again.  Sunday during the day and evening, I was off/on sleeping.  Of course, I was also very weak and couldn't walk without help for about 4 hours after I woke up the first time.  My feet are 'asleep' and my legs are getting the numbing feeling as well.  Bowel movements haven't been the greatest either as I can't 'feel' or 'tell' when those are happening or about to happen.  

I will also talk to the PCP about a cortisol test as well if I didn't mention that earlier.

Thank you all for your suggestions and information on what worked for you.  I appriciate it greatly!!

I suppose besides being tired all the time and sleeping, and also the pain and numbness that I'm feeling constantly, moreso is the decision on what I'm going to do about my treatment.  Since all I have read about online, in books and magazines, and online forums is that this drug does this, and this drug does that.  And my doctor says: I can't help you with that decision.  Yet he really doesn't show me any insight into why I would even want to take any of those medicines, let alone, stay on the copaxone still.  If anyone has any ideas/suggestions/input/ new websites that aren't common but you like to go to, please let me know.  I'm always open for ideas.

Thank you so much for listening and reading this!!

-Natasha.

[sickinmo]

I just wanted to let you all know that I have read what you have all posted.  I need to try to get some sleep though, but will reply back to all questions and suggestions on Sunday the 16th.  Thank you!!!

[sllowe]

Hi there,

No problem w/the length of the post!

Are you RRMS? It does sound to me that the flares have left you with residual issues.  Hard telling if this past one - which sounds like a dosey, will take 6 months recovery or not.

I hear your frustration - you just want a break so you can muscle through the next bout.  It's understandable.  It's what gives us strength and hope.

Has the Dr. only suggested a change in meds and not a combo type therapy with a low continued dose of the solumed or prednisone? How did the solumed shorten your recovery in the past?

Do you thing the med mentioned was novantrone? It's prescribed for secondary progressive, not (that I'm aware of) for RRMS.

You are young - dx'd young, and I sure hope we can be here for you.  I hope you don't mind all the questions but it will help us, help you.

ttys,
Shell

[Khiba]

Just to add to everyonelse's great suggestions, maybe have your adrenals tested. After solumedrol, which totally overrides the normal cortisol output of the adrenal glands, they can crash big time, resulting in just the symptoms you describe. As I have found, Drs are notoriously bad at diagnosing adrenal problems unless you fit into one of the crisis categories, like Addisons or Cushings diseases.

I suggest asking your pcp or endocrinologist for cortisol testing. A very good method to  "seeing" what your body is doing with cortisol is a 4 times a day saliva test. If your daily cortisol rhythm is widely off from normal, you can use hydrocortisone to re-balance your normal rhythms, rest the burnt out adrenals, and get to feeling better.

I am still in a slump after 5 days of solumedrol way back in February... I totally understand how you feel. I am still searching for a sensitive Doctor to help me treat my flagging adrenal glands.

Hang in there!

Jessica

[JulesL5S1]

I'll start with I'm a limbolander however your current relapse seems much like what I went through.  

Back in fall 2007 I was losing the ability to walk and my fatigue was unending.  Every time I started to get better something else went wrong and it was set back after set back.  That's the short version.  Now in Aug 2009 I am much better.  When people talk about relapses most are "shorter" so I was discouraged by what was happening to me.  However now in Aug 2009 I am very pleased with the improvement.

As my medical health was declining I started putting together a medical team.  I had recently moved to a new area.  Now I have a great team.

I relate to the sleep disorder part.  I'll share my success.  My neurologist is a "focus on one symptom" guy.  (I like this now!)  He asked me to give him one symptom to focus on and my thoughts were - my arms don't work, my legs don't work, however I am so tired that I can't leave the house - so I said "fatigue".  We discussed that in detail.  

I have HORRIBLE reactions to any sleeping aid.   I just can't wake up.  What I use now is a generic form of Ativan (this is an anti-anxiety medicine and for me it allows me to sleep).  I take it 1/2 hour before bed time.  Now the second problem is how to wake up.  I am now on Nuvigil (2nd generation Provigil).  I take it after getting out of bed.  Now when my eyes open in the morning I force myself out of bed and once I'm awake enough to swallow (this can take up to an hour) I take the Nuvigil.  That starts to work within one hour.  

This was not an instant fix.  It has taken many months to find the right drug combinations.  However without it I was stuck in my house.  My perspective is that the sleep disorder part needs to be fixed first.  It is difficult to fix other problems if you aren't "totally awake".  

And yes, you should see at least your primary care for blood test.  I also have hypothryoidism however those levels were normal and did not contribute to my sleep problems.

Good luck as you work through this episode.  You are not alone.  Hugs, Jules

[Karen99]

Hi.  I am sorry you are not bouncing back quickly.  A change to one of the other immune modulators is perhaps in order. With the increase in relapses you might want to consider a more aggressive medication.  I am very tired so I'm not going to offer suggestions in that area.  Other forum members are better versed, as I've only used Copaxone.

My suggestion for now is to call your neurologist and report what you are experiencing now.  It is important that they monitor you at this time.  They may or may not want you in for an office visit.  Please let them know that you are sleeping for days at a time.  You do not want your general health to deteriorate because of this relapse.  High dose SoluMedrol does not come without risks.  There are possible side effects and you need to report how you are doing.  

Are you eating and drinking well?  You should consider going to your primary physician for a general check up to make sure you don't have an infection smoldering. (very possible after using SoluMedrol)  Have them check your glucose levels and that sort of thing.  Cushings syndrome should be ruled out too.  

http://ms.about.com/od/treatments/a/medrol_tips.htm  

Also let them know about your level of pain.  There are several pain medications that neuros can prescribe that can help.  

There are ways that your doctors can help you through this rough bump in the road.

Good luck to you and I hope sleep finds you soon.  I'm off to nitey nite myself.