Relapse???

[candy158]

Hi guys, I have a question.  Have any of you ever been told that you can't have a relapse of MS when you have Secondary Progressive.???   I was told today that it sounded like a relapse, and I'm going to be checked for a bladder infection today, and will see my Dr. tomorrow, but the MS clinic said I might need steroids , but she said, that usually with Secondary Progressive you don't have the relapses.  So, if that is the case, what is going on with me now.  I'm sleeping 20+ hours a day for the last 4 days, and I am feeling so hot and cold at the same time, my upper body is boiling and sweating, and my legs and feet are frozen and can't seem to get warm, then I have this cold stripe running up my middle back and my ribs seemed to be locked on the right side only, and it is very painful.  

Anysuggestions would be greatly appreciated.?????   Oh, I also have this high pitch tone in my right ear every time I lay on that side to go to sleep ??????  Anyone ?????

I hope this gets better soon,

Candy158 ......

[candy158]

yes I did Mary, I got tested, but no results, so I guess that is good news.  Day 2 of the steroids, and day 3 tomorrow, and then we are done, so hoping it works.....

thanks again for your thoughts,
Candy

[twopack]

Did you see this Candy?
I see you ran into a roadblock on the IVSM.  It's crappy when systems fail.
Did you find out any results on the UTI?  I still think checking for and treating an infection could benefit you greatly.

Mary

[Millsinc]

Hi Candy sorry to hear that you're in this but try to stay strong and I'd keep you in my prayers. I had my share of steroids both IV and Oral, and what they would give me before each dose was Omeprizole or Pantogo this is to coat the stomach and prevent the steroids from irritating your stomach. The only side effect I experienced with the steroids was some weight gain which I lost after a month or two.

I do hope I was helpful and all goes well. Keep in touch!

~Hugs & Kisses~
Tricia

[sllowe]

Hi Candy,

I'm sorry you are scared. There are many members here who have been on the IV steroids, and hope they chime in. Weigh it out, if the relapse is bad, and the steroids have the potential to clear it quicker, it's worth the risk. If you can deal with your current probs, then pass on the offer. Once you make the decision you'll probably feel better.

Mary, and Lu bring up good point ref. the UTI, hope you are able to get checked if even just for good measure if you were not checked already.

Get back to us when you can.
-shell

[Lulu54]

Mary has this right in her memory bank.  I did have the rigors with sepsis..  I was being treated for a UTI from July until October when I got really sick.  I had absolutely no idea that I was as sick as I was ..... funny it didn't affect me that way.  The doctors treating my uti didn't know this either.  

If I were you, I would want to have a blood culture done to verify that a bladder infection had not ascended to your kidneys and went for a free ride in your blood stream.  It is not all that unusual to happen if you have UTI's from what I know.  

I wasn't sleepy, but I certainly had the chills.  and the shakes/rigors/spasms came and went on their own.  

Please ask for a blood test to be done in addition to the urine dip stick.

be well, Lulu

[twopack]

Did they do a good check for a UTI Candy?  What you describe sounds as much like sepsis to me as it does a relapse.  The high dose steroids won't help a UTI and even have the potential to make things worse.  A UTI could make you feel pretty lousy in general like Alex said.  You would need a urinalysis and urine culture to determine the best antibiotic to treat a UTI.  They can be hard to detect at times and difficult to clear up.

I'm surprised Lulu hasn't passed by here and said something yet.  She ended up with sepsis and I think she had been treating a UTI and was being followed closely by her doc at the time.  Her most notable symptom was "rigors".  She described it as episodes of uncontrolable shaking if I remember right.  That could feel like spasms.

If you stay overly sleepy, have chills, run a fever, have a racing heart beat, are breathing fast or heavy, feel alternately hot and cold, have periods of trembling, can't think clearly, stop making much urine --- or any combination of these things --- please ask them to check for a UTI again before starting those IV steroids.

Hope whatever this is gets straightened around soon so you can feel better.  You deserve a break one of these days.

Mary

[Sarahsmom46]

How long have your symptoms been going on?   I only ask because if it has been a week or two since they started, the steroids may not offer the relief you are so desperately looking for.  They work best when they are started sooner rather than later after the symptoms started.  I know this from experience.  

How many days did they prescribe, 3 or 5?

[Sidesteps]

I'm wishing you luck. I hear a lot of people tolerate these well.

Please post how it goes.  I would like to know if it eases your fatigue since a common side affect is insomnia.

[candy158]

Hi guys,
Got home from the Dr. and waiting for a call as to where I go for the IV Steroids.   Any suggestions about what I should do??  I'm a little scared, she said the dose of steroids is very high, and they talked about oral ones, but then she said that it would and could really upset my stomach, and they also said that it could cause ulcers. So, we are waiting to find out where we go to get hooked up for a few days.  

I'm afraid, this is something new to me, and we have never done this one before.....

Wish me luck,
Candy

[grannyhotwheels]

Hi Candy... I have PPMS and although I don't get relapses there are days that my symptoms get a whole lot worse... That may be what you are experiencing along with the bladder infection making it a lot worse... I would say to definetely take the steroids... They should help...I hope they do... I'll be thinking of you and please let us know what the doctor says...

I'll be praying,
Carol

[sllowe]

Candy - Have been on them, but not for a relapse, but I would have tried it if it was offered. My thought is - sorse case scenario, it doesn't help. I say go for it if you can. Soo glad hubby is going to put the thumb on them...
-shell

[candy158]

Hi Shell, seeing the Dr. today at 12:30, she isn't my regular, she is the secondary dr. as mine is apparently to busy to see me.  So, if she does not do anything, ( hubby is going to) , then I am hoping to demand to see my primary.  He will be there, but busy with other patients.... (sorry for the confusion) .... anyways, if they say to go on the steroids, then I think I will, I'm just not feeling well at this point.  

Have you ever done the steroids?   I have not, and am not to sure what to expect, though I have done and am doing some research ....

Will keep in touch,

HUGS,
Candy

[sllowe]

Hi Candy,

My understanding is that with SPMS you can have those occassional relapses. Doc saying not usually is probably par for the course, but most all my reading says it can happen, along with minor remissions.

I too hope you see some improvement soon. Are you going to go on a course of steroids?
Thinking of you,
-Shell

[HVAC]

If you are no longer considered relapsing remitting you probably would not be considered in relapse. That said in Progressive MS you can have times when symptoms are worse. You also can have times when you have more inflammation. Inflammation is what steroids are for. The types of MS are not cut and dry. If you have a UTI it can make MS way worse. It does not matter what they call it as long as they help you.

Alex