Relapse or just "MS Stuff"?

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jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 8/1/2006 9:52 AM (GMT -6)   
I do have a call in to my Nuero and should be calling me back soon.
 
In the meantime, here are my Sx's. I should mention that I have been DX with MS since 1993 and recently got over a 3 month relapse that affected my left leg and left me with tremors/spasticity. I am on Betaseron, Zanaflex, Baclofen and a few others..
 
The last 2 days my right leg (usually my better side) had stiffened up so tight and my calf and thigh get hard as rocks
 
This morning I had to go pee really bad all of a sudden, and leaked a bit and was sooo hardr to hold the rest in, but I did until I got home!
 
This morning my right hand starting twitchin back and forth sporatically, especially when I pick something up or try to use it slightly.
 
The front of the left side of my head/eye is aching bad.
 
My speach is fumbled, like the words are hard to come out.
 
I just been having a hard time knowing when to call, but I guess he will let me know if I need to come in. Just looking for some input. Thanks!
 
 
 
 

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2006 2:23 PM (GMT -6)   

You have indeed been diagnosed with MS since 1993...so 16 years? Presumably until now you've had a relatively minor experience with it? Sounds to me like what you're experiencing is the typical "MS stuff".  Maybe after 16 years it is progressing a bit more rapidly. There are meds you can take for the bladder control, if that becomes increasingly a problem.

Another thought - you mentioned a headache. It is possible you could have a bladder infection. The headache might be a sign of a fever, and infection, and that could cause not only your bladder incontinence but a flaring up of your other symptoms.

It's good that you have a call in to your neuro.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 8/1/2006 2:31 PM (GMT -6)   
Thanks Uppity. No fever, burning or anything, so not thinking UTI, but will get checked anyway.
 
My appt is tomorrow, so will see what he says. It just does not feel like "MS Stuff" this time. My right side is getting weaker.
 
Ever since this last relapse, I have felt like I am declining, so perhaps I am progressing :(. I just feel so bad for my kids. I had promised them a movie tonight and water park tomorrow, but if this gets worse or stays the same, no can do.
 
How do you make a 7 year old understand you have to break promises? I know you do not have kids, but I am just venting - this is starting to get me down. I feel like such a failure as a mother. This has become daily, and I suppose I just have not really accepted that this is my life now. Especially if I AM progressing, then I do not know what I am going to do!
 
Thanks for listening.

jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 8/3/2006 5:44 AM (GMT -6)   
Had MRI yesterday, should get results today.
 
If he sees new lesions, I will have to go BACK in the hospital for the 6 day ATCH treatment since I am allergic to IVSM VIEW IMAGE

Now I regret even calling him, only because my leg is moving better today, and even if I do have new lesions, I cannot go to the hospital every time this happens!! I want to take care of myself, but geez, I have not even paid my last bill! Hubby made me call right away, but shouldn't I wait at least 48 hours ???

AND, if there ARE new lesions, and since I am on Betaseron (although only 3 months), he is thinking progression and need to go to Chans (sp?) Hospital in Gainesville and gave me a packet of info on Novantrone!! VIEW IMAGE

Thanks!

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/3/2006 8:37 AM (GMT -6)   
jena1225 said...
Had MRI yesterday, should get results today.
 
If he sees new lesions, I will have to go BACK in the hospital for the 6 day ATCH treatment since I am allergic to IVSM VIEW IMAGE

Now I regret even calling him, only because my leg is moving better today, and even if I do have new lesions, I cannot go to the hospital every time this happens!! I want to take care of myself, but geez, I have not even paid my last bill! Hubby made me call right away, but shouldn't I wait at least 48 hours ???

AND, if there ARE new lesions, and since I am on Betaseron (although only 3 months), he is thinking progression and need to go to Chans (sp?) Hospital in Gainesville and gave me a packet of info on Novantrone!! VIEW IMAGE

Thanks!
Jena,  I sure would be carefully questioning the doctor. First of all, the ATCH is an old (but admittedly effective treatment).  I don't know that I'd do much more than wait, particularly if your leg is improving.  And if you've only been on Betaseron fo 3 months, I'd be questioning that, too. Usually it's at least 6 months, even longer, to really begin to see if there is a slowing or reduction in benefits.
 
He sounds ready to treat this pretty aggressively...given how long you've had MS, I don't know that I'd be too eager to do that.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 8/3/2006 9:04 AM (GMT -6)   

Thanks for your reply Uppity :)

He actually did say that 3 months is not long enough. I really think he was just wanting me to at least make the appt, knowing how long it is to get in, just in case my MRI does come back showing bad progression, and gave me the next option if I still keep progressing. He actually also mentioned Tsyrabi (sp?). Regardless of how long I have had MS, I am most certainly progressing now.

It took quite a few years to do so, but...

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/3/2006 9:23 AM (GMT -6)   
The tysabri ...that would be an absolute-last-resort treatment for me. There are still too many questions about the risks of it. I'm sorry you're progressing. After all those years of not a lot going on, it has to be scary for you, too.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/3/2006 1:12 PM (GMT -6)   
Hi Jena,

I'm sorry you are progressing and please let us know what you find out about the MRI results when you get them. 3 months really isn't that long to be on betaseron to see if it's working for you or not but your doctor does sound like hes very proactive in treating you!

It's very easy to feel like your a poor parent when youre dealing with a chronic illness, but kids are very adaptable. We have five teens now and when they were younger it was really hard not to disappoint them from time to time. We got to the point where we no longer made promises just basically said we would love to do this but we have to see how dad is feeling. Made it a bit easier when we had to say no. You're a great mom! If you weren't you wouldn't be worried about dissappointing the youngins.

Kimber
 
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jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 8/3/2006 7:48 PM (GMT -6)   
Thanks Kimber :)
 
Well, my prelim results came back with no new lesions :) but he still has to look at my old films for comparison to be sure none of the lesions I do have have grown. I wonder what could have done this to my leg if I have no new lesions?
 
What I DO have again is sinusitis and my left sinus is completely closed, which they found on the MRI. Had this a couple of years ago. It could explain my "allergies" and headache since it is on the same side. It also causes fever, but all my Flu-like sx I have associated with side-effects from Betaseron... and have not given another thought...

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/4/2006 4:13 AM (GMT -6)   
Yep, sinusitis can cause a low-grade fever, not so much that you'd even notice it necessarily, but your MS symptoms can flare up if you have an infection elsewhere. Which might also explain your "wonky" leg. Presumably you'll get some treatment for it? I hope you feel better soon.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 8/4/2006 5:41 AM (GMT -6)   
Thanks once again Uppity :) I actually came to the same conclusion, as it does makes sense. But isn't a "flare" a reoccurring episode involving a lesion I already have? If so, would it not enhance on the MRI?
 
They will be calling something in for me today for the infection. Just kind of ironic, that I have all these mild symptoms that can ALL be associated with "B", so I ignore them, and it turns out it IS something else! Go figure eyes

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/4/2006 8:18 AM (GMT -6)   
Lesions, or lesion location, don't necessarily correlate precisely to a symptom, or outward sign of a problem. Like, it's not necessary to have a lesion in a particular spot on your brain or spinal cord for your leg to "go wonky". It's more like -- the nerves affected work hard to try to "go around" a problem area...and sometimes they're successful, and you won't notice a problem; other times the "alternate route" just isn't as smooth, so there's a problems.

Yes, it's a challenge sometimes to sort out what might be MS-related, or Betaseron related, and what might be something ELSE going on. Keeps you on your toes! :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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