Hi....MRI next week...worried - Multiple Sclerosis Message Board

MIAMIMOMMY · 12-02-2005, 07:31 PM

Hi everyone. I'm sort-of new to this site...i was so excited to read all of your stories and advice that I just jumped-in and started posting without saying hello or introducing myself (how rude! not too much experience with posting...sorry!). I am 38 yrs old, married, have 2 beautiful young kids, work full-time, and was dx'd with MS in July. I started to have severe fatigue 2 years ago, went to my PCP. She did the routine lab test (were normal), so told me to rest more , stress less, ordered anti-depressants (I didn't tolerate well)....I had L'hermitte's sign then, but didn't think was related and didn't think was important enough to tell her...I went on like that for about 2 years...kept trying to be more "efficient" so I could get all my work done and still be a happy person. It was not until, as odd as it may sound, when the news came out that Johnny Cochrain (of OJ et al) died of a brain aneurysm, that I finally admitted that the electricity in my legs might be serious (I thought maybe it was that or a tumor). My neuro (was seeing him for migraines) was sure it was arthritis, because I "looked too good to have anything serious". MRI of c-spine showed lesions in the posterior columns...neuro still not convinced...brain MRI showed lesions. Started copaxone in August...still had lots of fatigue so started provigil, has helped some. Began having lots of weird feelings in my legs (burning feet, deep pain in thighs that feels like i did 3 hrs of step aerobics, feels like i am walking on stilts.....noone can tell anything from looking at me, i just feel like this). I had pain in my right hip that progressed into my tailbone area...can't sit for long, and it hurts in my hip when i bring my leg forward to walk. Saw neuro yesterday. He does not think the back and hip pain are MS-related, but still is ordering a MRI of L-spine for Tues. I may start steroids next week. My family and friends are all happy that i may have a herniated disc and not a relapse of MS!...I think it would really stink to have something new to deal with...and in my heart i know this is related to MS. My neuro is very well-regarded in the MS world, but I still leave him not really knowing if I am in a relapse or not...how do you know? THe truth is I don't feel like any of my symptoms have gone away.......I am so sorry to have rambeled on so long (God bless those of you who got this far!), the truth is i am really having a hard time. I'm can't stop worrying where this is all going...feeling sad that i can't do everything my kids want me to do..freaking out everytime i can't remember something...starting to realize i can't keep up with the demands at work (self-employed)...am grateful i am not worse, and am very grateful to all of you wonderful and supportive people. I would appreciate any advice you may have......i promise to be more brief next time! Thank you all.

MIAMIMOMMY

curious11 · 12-03-2005, 09:21 AM

Welcome MiamiMommy! This board is great for venting out frustrations, so don't apologize for it, because we all have/ will do it at some point! I was diagnosed in July as well. I feel like I can really relate to your story. I too felt like none of my symtoms had gone away since the summer. I began to question whether or not MS meant dealing with certain symptoms all the time, even not when in an attack. I had done 2 rounds of IV solumedrol (steroids) and only found very temporary relief. I remember posting on how down I was that the steroids weren't working as well as I had expected, but everything takes time, and this disease sure is a tricky one! I have found some relief in a maintenance treatment of once a month streroid treatments continuing for 6 months. I look forward to that infusion every month because I know I will have a couple good weeks following it. I went through a period of thinking this would never get better, and decided I had better learn to deal with it. But you can't let your spirit down and let MS get the best of you. Everyone says it, and I have learned this first hand... rest when you are tired, and take advantage of the times when you feel good. I am a mother as well, a single mother, and I have learned to make the most of the times when I feel good with my son. We can't always be "supermom" with this disease, and that's ok. I am sure you have a supporting network around you that will help you through the tough times, so take advantage of that when you need to. Good luck to you

MIAMIMOMMY · 12-04-2005, 03:11 PM

Thanks for your encouragement Curious! I guess we share a sort of "Birthday"...it certainly helps to know someone going through the same things. I am trying to learn to pace myself with the kids, and not sweat the small stuff....am looking forward to Christmas in its true sense. You mentioned your steroid program...I understood from my neuro the solumedrol I may take is in pill form...does that make sense? when do they choose to use IV? I never have taken them before. I guess I'll learn more next week. Thanks again, you really helped me this weekend.

Miami

curious11 · 12-04-2005, 04:13 PM

Miamimommy... I am not sure, but is your doctor referring to Predisone? That is also a steroid usually used after the IV solumedrol as a tapering off system to slowly wein your body off the drug. So typically you do a 3 or 5 day course of IV solumedrol, then a week or longer taper of the Prednisone (which is a pill). I personally recomend the steroids, some may not. They have done wonders for me, and i'm not sure where i'd be at this point had I not taken them. Good luck to you , and enjoy the holidays with your children!

MIAMIMOMMY · 12-04-2005, 05:31 PM

Thanks Curious..I'll let you know how it goes....have a good holiday with you family too!