Solumedrol

[cin68]

I am scheduled Monday to do an IV for three days of Solumedrol.  Has anyone else done that and if so, what is your opinion.
I am alittle nervous about it. (Side effects)

Cin

[illinwithoutacause]

i am so sorry, cindy.

i am sending thoughts of strength your way.  as awful as you are feeling, you will get through this.  you might feel even worse before you feel better, but you absolutely will find yourself on the other side of this.

peace,
binx

[cin68]

I didn't think it was possible, but I feel worse today.

My left arm and leg is almost useless.  I am painfully tingling all over.  Can't feel my tongue, I am itching all over.  Why did I do this treatment?

I am miserable!

[cin68]

Thank you binx,
You have made me feel better.  This is all new to me and I had no idea what it would do to me.
I guess now I need to find out why my doctor that ordered this in the first place said I was to never do it again.
I never had a chance to talk to him to tell him what it did or didn't for me.

I had to come back to work, but I did take half a klonapin.  I was told I can go home but I need to work.  Keeps my mind kind of focused.  I have just warned everyone to stay away and let me do my own thing.
I have got alot of work done.
Again thanks,
Cin

[illinwithoutacause]

dear cin,

the only way i can explain what is happening is through metaphor.  you are on a body chemistry roller coaster ride, but please know it will end.  i was a blubbering, shivering, freaked out mess for several days and felt like the world was going to end, but it didn't.  it just seemed like it was.  to be honest with you, i was afraid my husband was going to have to call the men in the white coats since i felt like i was going crazy.

i am so, so sorry you are struggling.  i know it is just hideous and your body and mind feel so out of control.  i wish there were something i could say that would help you to feel better, but again, just know that this hellish experience is not going to last forever.  

don't feel this was for nothing since the medicine is still doing its thing in your body.  i was told that the steroids stay in your system for a bout a month, so the numbness may subside again.  take your klonapin.  watch t.v.  do anything to help take your mind off of how you feel.

hugs to you, cindy.

binx

[cin68]

I am really confused right now.  Yesterday I finished my last day of treatment, didn't go over to well.  My blood pressure dropped.
I felt horrible and all I wanted to do was sleep and I did.

I just got off the phone with the Doctor's office that ordered it and of course it was his nurse that called because he was not there, but in his notes he wanted her to tell me that he does NOT want me to do this again.  Of course no explaination, he would have to tell me himself.
Did the hospital contact him or something.

Today ***** so bad, I am crawling out of my skin, crying at the drop of a hat and not to mention the lovely bladder control issue.  Of course the nurse said that was all normal.

I cannot take oral steriods so I have to taper off on my own.

This morning after taking my shower, which was not too hot, but the numbness came back.
Somebody please enlighten me on what is going on.  I feel like I spent three days of my life wrecking my body with steriods for nothing.

Thanks,
Cin

[illinwithoutacause]

dear cindy,

feel free to vent all you want/need to.  you know we're all here to support you.

i can relate to how you say you are feeling.  that is what happened to me.  

take the klonapin.  do whatever is required to get through this.  like i said, try remember that how you are feeling is only temporary.  you aren't going to be tweaked forever.

take good care,
binx

[cin68]

Well I did day one and at first I felt fine, but as the day progresses I am getting more aggitated and want to jump out of my own skin.  I have the energy to do just about anything but I am having the stranges symptom.   Instead of my legs feeling better, they are hurting so bad.
I think it is time for a klonapin.  I am a nervous wreck.
Ok just wanted to vent!
Cin

[illinwithoutacause]

re:  your concerns about being a raging b*tch...

again, i can only speak from my experience, but if you have a tendency to be pretty emotional in general, i would definitely keep the klonapin on hand.  i was an absolute mess.

take good care of yourself.  i am sure it will all be just fine, but if the road gets bumpty, just know it's temporary.

best wishes,
binx

[cin68]

I will call my doc and see if he will test me.

I know many symptoms mimic MS, but I have never had many of the Lyme symptoms.

This may sound crazy, but I do check myself often for bumps, marks, rashes or anything.
I have a fear of skin cancer, once was a sun bunny.

I have never seen anything on me that resembled a rash, but who knows, better to be safe than sorry.

Have a great weekend and thank you for your advice,
Cindy

[wonko]

Given that Lyme disease can cause all of the symptoms of MS, and can cause similar damage on MRI, I'm not sure that I follow your neuro's logic.  I also had two "MS-like" brain lesions, and several non-specific ones as well.  I was 28 at the time of my scan.

I have zero medical training and am in no way trying to diganose you or say that you have Lyme.  I of course couldn't know such things!  I am only offering my point of view based on my experiences and time spent a year as an undiagnosed person who was told that it was "maybe" MS and "definitely" not Lyme by many doctors before I arrived at my diagnosis and treatment.  If you do have MS, I am terribly sorry to hear that.  

However, I would be remiss to not question what your neuro told you about Lyme disease.  Ticks can't read maps, nor do they obey boundaries.  There is also a tick-born disease spread by the Lone Star tick in the South called Master's disease.  It has a lot of overlap with Lyme.  A very precursory internet search led me to the below site, which you may (or may not) want to puruse.

http://www.georgialymedisease.org/lyme_in_the_southeast

As I said in my earlier post, many people with Lyme disease go years as un- or mis-diagnosed.  I don't assume that everyone without a clear-cut diagnosis really has Lyme disease, but I would urge that population to give it further thought and consideration.  The cloud of confusion and controversey surrounding Lyme makes it a strongly polarized topic in the medical community, meaning that as a patient you will hear wildly different points of view on the subject from different doctors.

[cin68]

I forgot to add that they have not mentioned anything for tapering off.  I have an ulcer and I cannot take oral steriods.  I do have plenty of klonapin though and sleeping pills.


My fear is my mood afterwards.  I feel like I have put my family through so much in the last year I do not want to be a raging bit*h too.

[cin68]

Thank you so much for your replies.
I saw my new MS Specialist Monday.  Supposedly the best of the best at Emory.
He said that he is 98% sure I have MS, but of course I do not completely meet the criteria.  I only have 2 MS lesions.  I have other lesions, he stopped counting at 10.  Not sure what is causing those.  I do not have hypertension, I do have headaches, but not miagranes.
He said from my symptoms he really thinks I have it, but until I have more MS lesions he can not officially diagnose me.  Of course I cried because as we all know this is frustrating.
He said he will not test me for Lyme because I do not have those symptoms and because of where I live he does not think I was exposed to ticks.
From what he thinks I have had MS since 2005 or that is when it started.
I am desperate for relief.  I am the one that suggested the steriods to him and he totally agreed with me.
After what I went through last night with my legs I am willing to try anything.

Everytime I relapse the symptoms are worse.

Again, thank you for replies.

Cindy

[illinwithoutacause]

hi cin

let me begin by saying that i hesitated to write this since i don't believe that my experience was typical, and you will likely have a completely different reaction than i did.  even so, i feel like i need to be honest so you can properly prepare yourself.  

i am as of yet undiagnosed, but a recent MRI revealed inflammation in my spinal cord at the end of january.  in response to those findings, i underwent a 3-day infusion of solu-medrol in early february.  my neuro did not prescribe a tapering dose of oral prednisone and i *strongly* suggest you ask your doctor to do so.  from what i have understood from others, a tapering dose of steroids would have made it a hell of a lot easier on me.  the nurse that administered the last infusion was shocked that my neuro didn't see the need for the taper and said, "you are a human being.  what on earth is he thinking?"  that scared me but good, and she was right.  the "withdrawal" or whatever you want to call it was a very harsh experience for me.

my neuro did give me sleeping pills though along with an antacid which were mildly helpful.  the sleeping pills helped me go to sleep, but i couldn't really stay asleep for more than 5 hours.  be prepared from some wakeful nights and serious jitters.  have things on hand that will soothe you--music, pleasant movies to watch, books on cd/tape, things you like to eat, etc.  i was also told my appetite would increase dramatically, but i had the opposite reaction.

ultimately, my symptoms did not respond to the medication, and as there is still some doubt as to whether i have MS, that did not come as a complete surprise.

again, i do not want to cause you any alarm since, like i said, what happened to me is not typical.  i just felt like you could benefit from hearing about my experience so you can give yourself a cushion of preparation.

i hope everything goes really well for you next week.  please let us know.

best wishes,
binx

[wonko]

Do you have a diagnosis that warrants steroid treatment?

If you do not have a diagnosis, please use caution when considering steroid treatment.  

Steroids suppress the immune system, which is helpful in clearing inflammation.   If the inflammation is the result of bad autoimmune activity, the risk of weakening the immune system may be worth it for the benefit.  However, if the inflammation is actually a consequence of appropriate immune response to an infection, than steroids can have a negative effect.  

I speak from my experience as a Lyme disease patient.  Lyme can avoid detection in ordinary tests.  I was negative for it on several screening tests and also my spinal fluid was negative for it.  Thinking that I had an autoimmune disease, my doctor put me on oral steroids (so a lower dose than IV).  I felt very strange while on the steroids, but after completing the course I started to feel great, and about 99% of my symptoms resolved.  However, the effect was short-lasting, and within a month I crashed, becoming more sick than I was before, to the extent that I had to stop working full time.

It is a very common experience among Lyme patients to be un- or mis-diagnosed for a long time (years, decades).  Therefore, many Lyme patients are mistakenly subjected to steroid treatment, and the results can be really devastating.  

There are other risks associated with steroids that apply to anyone, not just those with Lyme disease.  For example, they can deplete your calcium and cause bone problems if used too much or for too long.  They also really affect mood, and can cause sleeplessness.  I'm sure there are more risks and side effects, make sure to discuss thoroughly with your doc before making your decision.