Should I start meds?

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mamana monster
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Date Joined May 2004
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   Posted 1/15/2008 1:35 PM (GMT -7)   

Hi all! I am a 42 year old confused woman! I have been through a variety of tests over the past month after experiencing optic neuritis that began about two months ago, including an MRI that showed several lesions in the frontal lobe area, I also have elevated sed rate. My neurologist gave me information today about Betaseron and stated that I should do some research so I could decide if this was a path I would opt to take at this time. Everything I have read suggests that the sooner you start meds after the “first MS related symptom” the better.

 

Here is the problem…my neurologist can not definitively give me an MS diagnosis after all the testing, although he can’t rule it out either. I do feel comfortable with him and think he has been thorough in his testing but don’t really want to jump into taking another prescription. I want to be proactive in treating this, if it is MS but again I’m nervous about beginning a new drug. I should mention that I was dx’d with UC in 2004 so I already have one auto-immune deficiency, guess that makes it more likely for me to have another (so says neuro). The elevated sed rate could be due to the UC although I am currently considered to be in remission.

 

Sorry about rambling… Should I start the treatment or wait? What are the cons to starting it if it turns out not to be MS? The episodes of optic neuritis are quite disturbing and I would like to get that under control but really don’t know the best way to approach it.

 

Thanks in advance!

Post Edited (mamana monster) : 1/15/2008 1:38:01 PM (GMT-7)


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 1/15/2008 1:52 PM (GMT -7)   

I'm not a doctor, and don't pretend to be one.  If I were in your situation, I'd trust the doctor's recommendation, and start the Betaseron. Several lesions, optic neuritis -- both point to MS. (I know nothing about an "elevated SED rate", so won't comment!)  If it does turn out later that it is not MS, you can always stop the Betaseron.

It is an injectable drug, and there are side effects...but the potential to slow the progression of the disease is quite promising, and as you noted, people are encouraged to start these drugs early, before the disease progresses to the point of disability.

What further testing has he recommended to confirm..or dismiss..an MS diagnosis?


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


rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 1/15/2008 4:51 PM (GMT -7)   
Hey Mamana

I have to agree with Uppity here. It won't hurt u to be on the betaseron (unless u'r not compatible, and then u can try one of the other meds) and can only begin to help if this is ms. Unfortunately it does seem to be very possible that its ms. I'm so sorry for all u've been thru and this possible dx, but please do help u'rself in every way u can.

Welcome to the board and please feel free to post as often as u can and want. We have live chats on Mondays at 6:00pm (cst) each week and would love to have u join us! Please take good care of u'rself and let us know how u are and the decision u make. Again, welcome to the board!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
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mamana monster
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Date Joined May 2004
Total Posts : 2236
   Posted 1/16/2008 7:37 AM (GMT -7)   
Hi and thanks for the responses! I'm going to meet with my family doctor today and discuss this further. May sound strange for me to want to get his opinion but we have seen him for over a decade and I trust him with out question. I guess I just need some reassurance. :)

As far as additional testing, the only thing I have left is a spinal tap. Neither my neurologist or myself are chomping at the bit to get that one done. Also, he has stated there is no guarantee that we will be any closer to a definite dx afterward. Not really into the whole unnecessary pain thing so I think I will pass on this one! Ha!

I am really leaning toward starting the Betaseron and see where that goes.

Thanks again for the advice! Have a wonderful day!

 

 

"Be yourself. An original is always worth more than a copy."


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 1/16/2008 8:00 AM (GMT -7)   
mamana monster said...
Hi and thanks for the responses! I'm going to meet with my family doctor today and discuss this further. May sound strange for me to want to get his opinion but we have seen him for over a decade and I trust him with out question. I guess I just need some reassurance. :)

As far as additional testing, the only thing I have left is a spinal tap. Neither my neurologist or myself are chomping at the bit to get that one done. Also, he has stated there is no guarantee that we will be any closer to a definite dx afterward. Not really into the whole unnecessary pain thing so I think I will pass on this one! Ha!

I am really leaning toward starting the Betaseron and see where that goes.

Thanks again for the advice! Have a wonderful day!

I think it's really good that you have a family doctor you trust, and quite reasonable to talk this over with him.  You might also ask if he'd be willing to "manage your case" for you - -that is, once the Betaseron is prescribed, take over from the neuro, so you don't have to be running to different doctors.  I do this. My family physician is my "one stop shopping" for medical care.  He and I talk through stuff and if either of us think I need a referral somewhere, he makes it. Otherwise he handles it all, including prescriptions for renewals of the Betaseron (which I've been on for 15 or more years, now), and monitoring it.
 
Good luck with your visit!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


mamana monster
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Date Joined May 2004
Total Posts : 2236
   Posted 1/16/2008 4:19 PM (GMT -7)   

Well...back from my GP's office and he agreed with my gut feeling to start the meds. Put a call into my neurologist afterward and let him know. Guess I will go from here...wish me luck! I'm sure I'll have lots of concerns and questions for all you "seasoned" people. tongue

Thanks again!


 

 

"Be yourself. An original is always worth more than a copy."


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 1/18/2008 6:56 AM (GMT -7)   
the mri showed lesions, but to clinch the diagnosis my neurologist ordered a spinal tap. i was terrified! as it turned out, it was over before i knew it. the numbing was total, and i stayed flat the rest of the day. when the test results were in, i had some 6 "rings" and it confirmed the diagnosis. i cried both from the news and from relief of hearing a diagnosis. i then tried 3 different ms injection drugs, but my skin became too sensitive to continue. i am now on ivig only. to sum it up, don't be concerned by the spinal tap. it sounds worse than it is. also, good luck with the meds. linda

mamana monster
Veteran Member


Date Joined May 2004
Total Posts : 2236
   Posted 1/18/2008 8:31 AM (GMT -7)   
Thanks so much Linda for the comforting words. :) I guess the reason I am a bit nervous is because I had a spinal tap in the ER back about 13 years ago because I had viral menegitis and the wonderful person doing it had to stab me five times to get fluid! Owie! Also, one of those holes sprang a leak and I ended up spending a week feeling like someone was trying to suck my brain through my neck until returning to the hospital to have a blood patch. Within 12 hours of having that done I felt great! It was just getting there that was painful. I go see my neurologist again on Wednesday so I will discuss everything with him one more time before making a final decision.

Thanks again!

 

 

"Be yourself. An original is always worth more than a copy."


Lil Kimmie
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 2/5/2008 8:37 PM (GMT -7)   
You may want to get a second opinion if you haven't already. I went 6 years w/o any meds because my doctors were not certain about it. There was no way I was going to start a medication if they were not sure. After I went to a doctor that specializes in MS and he said that is what I have, my husband and I decided Betaseron was good for me. The only problem I have had is not having enough fat to inject into, so my shots hurt sometimes. The "flu-like" symptoms are not bad. I had a problem with getting super hot, that was about it. Good luck with whatever you decide.
 
:-)  

Lil Kimmie
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 2/5/2008 8:39 PM (GMT -7)   
Spinal tap, make sure you lay on your stomach to recover!!!! I laid on my back as I was told and got the horrible headache after!!!!!!!!

mamana monster
Veteran Member


Date Joined May 2004
Total Posts : 2236
   Posted 2/6/2008 8:02 AM (GMT -7)   
Hi Lil Kimmie! Thanks for the feedback. My neurologist and I have decided for me to start Avonex, I start tomorrow. With all my symptoms and tests he and another doctor said it would be best to get an early start on this. I wasn't overly excited about starting a new drug but I think after weighing all the options it's the best thing to do.
 New day, new adventure, trying to have a positive attitude. smurf
 
Blessings!
 

 

 

"Be yourself. An original is always worth more than a copy."

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