HealingWell
Search Close Search
☰

New Doctor New Attitude

Support Forums
>
Multiple Sclerosis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/2/2008 1:44 PM (GMT 0)
I had posted in the past that I wasn't getting any info from my doctors office.  Being newly diagnosed in September my husband and I finally decided enough was enough and I had an appointment with a new neurologist Wednesday.  She agreed with the other doctors diagnosis but agreed with me that I was having a flare.  She has ordered a new MRI of the brain and an MRI of the thoracic spine which I have never had.  This way she can tell what is going on and if I need more treatment.  She and the entire office staff were wonderful.  I had a depo shot from my GP while waiting for this appointment and that seemed to help my weak legs until I upped my dose of rebif thursday.  I have been down almost two days again with stomach issues and feeling terrible.  I can harldy wait to get to full dose and adjust.  At the new doctors suggestion I am doing 3/4 dose.  Glad it wasnt the full thing.  I am nervous about having another injection tonight.  I still have to work this week and hate this adjustment period.  This happened when I went to 1/2 dose.  They tell me this is normal.  Anyone have similar experiences please let me know.  I feel much better now that I have a new doctor.

Cindy

Posted 11/2/2008 4:08 PM (GMT 0)

Hey Cindy,

I am so glad to hear that you have a new doctor and you like her. That makes such a huge difference to know that you have someone you can work with.  Having a thoracic MRI is a good plan.  Many of us have spinal lesions and it is good to start monitoring those. 

I know you are in a hurry to get to full dose and to get adjusted to that.  Take it easy though and give yourself time.  It takes some people 6 months to fully adjust.  Keep managing those symptoms with advil and tylenol.  Get lots of sleep and take good good care of yourself.  Rebif is a good one if you can tolerate it.  I just don't want you disappointed if this takes longer than you have imagined.  Hang in there and let us know how you are doing. 

Posted 11/2/2008 7:27 PM (GMT 0)

Thanks Gretchen for the support.  The Rebif definetly kicks your butt sometimes.  Now if I can just get the burn in my lower legs under control.  I started taking Cymbalta Thursday but stopped after two days because I was having such side effects from the Rebif I wasn't sure what was what.  I will be calling the doctor tomorrow and see if there is something I can do in the mean time.  The Cymbalta seemed really hard on my stomach.  The Rebif hadn't done that as bad before.  I don't want to confuse the two as the Rebif is more important.  I have been trying different things for the burn.  Nothing has been very successful so far.  Any suggestions?

Thanks again,

Cindy

Posted 11/2/2008 8:07 PM (GMT 0)
The burn sounds like nerve pain.  I get that a lot too.  I can bare it most days but some days it is really bad and very distracting.  I don't take anything for it but I take a lot of supplements that are supposed to be "anti-inflammatory".  Do they work?  I have no idea.  I do know that I have been able to stand the burning most of the time.  I avoid dairy and gluten, they are supposed to be inflammatory for some.  I also take niacin.  That acai juice or tart cherry juice is suppose to help as well.  Kimber, our former moderator, says that her husband swears by the tart cherry juice. Although his nerve pain can be severe and then he resorts to powerful meds.  I can't find the tart cherry juice and so I use the acai juice.  I get that at GNC.  I mix it with this healthy juice I mix each week.  (no comments Sunny). 

Others have tried cymbalta, lyrica and neurontin for the burning as well.  You might want to give the cymbalta another try when you think you have seperated what is causing what (rebif versus cymbalta).  Rhonda swears by the cymbalta for managing nerve pain.

If you are a fan/believer in foods and supplements that reduce inflammation just google that. 

Posted 11/2/2008 8:26 PM (GMT 0)

Thanks Gretchen,

I am hoping that I can try the Cymbalta again soon.  Thanks again for all your suggestions.  I am open to anything.  Have a great evening.

Cindy

Posted 11/2/2008 9:18 PM (GMT 0)

Hi Cindy,

I’m so, so glad to hear you have a better neuro! A good doctor is priceless for sure  :-)  . I hope  you’re able to try the Cymbalta again for the nerve pain. I think the other really commonly rxed one that Gretchen already mentioned, is neurontin. Most people seem to tolerate it quite well.

Okay, I am trying my best not to comment on Gretchen’s “healthy juice.” I have had the…uhhh ”pleasure” of tasting it myself, and man, I think she is trying to scare her immune system into behaving by threatening it with that juice! skull tongue skull

Sunny

Posted 11/2/2008 10:07 PM (GMT 0)
I was hoping you would respond, Sunny.  Ok, so Sunny was over for a visit.  I had just made my "hippy" juice.  That is Sunny's name for it.  So I offered her a small glass.  She could not even finish it!!!!  It was so hilarious.  I really think it is ok.  It is not so yummy but I consider it like a vitamin or other supplement.  I just drink it up and I don't think too much about it.  It is made from tomatoes, beets, cucumbers, and carrots.  I also add the GNC acai. 


Posted 11/2/2008 10:15 PM (GMT 0)
Wow, that aftertaste though....it keeps going and going. Plus, drinking that first thing in the morning? All I can say is that you are hardcore, Gretchen1 tongue
Posted 11/3/2008 12:16 AM (GMT 0)
Hi Sunny,

If I thought I could scare my immune system back into shape with Gretchen's drink, I would probably drink it twice a day.  I couldn't take Neurontin for some reason it made me itch.  I have taken Lyrica before and would rather tolerate some of the side effects than this burn.  I think I just need to adjust to the Rebif before doing anything else.  I have a super sensitivity to meds.  They don't always agree with me.  I have trouble with advil sometimes.  Thanks for all your help. 

Cindy

Posted 11/3/2008 1:22 PM (GMT 0)
Hey Cindy

I don't have ms and of course have never used any of the meds for ms, but wanted to jump in here and offer u my support. I'm so glad u've gotten this new doc and will be persuing u'r needs. Take good care of u'rself and continue to be proactive.

As for Gretchen's hippy juice....well i have heard horror stories about that! She can tell u it's good all she wants, but i'm with Sunny! Run from the hippy juice!!!
Posted 11/3/2008 1:27 PM (GMT 0)
Heyyyyyyyyyyyyyyyyyyyy!!!!  It is NOT that bad, really!!!!
Posted 11/3/2008 5:38 PM (GMT 0)
Thanks Rhonda.  I appreciate the kind words of support.

Gretchen.....I vote for what ever works and if the juice helps then keep up the good work!  yeah

Cindy

✚ New Topic ✚ Reply