Im not sure if I am in Denial or what. It started when i started losing my hearing in my right ear. After 6 months and shots and steriods I went to a Ear specialist and loss 70% of my hearing in that ear. He thought I had a tumor. That is when I had an MRI. The MRI suggested MS due to the white streaking. Next, I had a spinal tap in December which was an ordeal a few days later had to have a blood patch because of the spinal headaches. Wow what a NIGHTMARE and now Jan. 10th I have been diagnoised with MS and my hearing has come back in my right ear. This is not what I wanted to hear. My husband has infusions every 6 weeks remicaid. Now I have to decide the next step or what treatment I want. I have a beautiful 4 year old and would not mind more kids. I want to be around for my grandchildren mentally and physically. I don't even know if this is a sympton but my head is sensitive to touch and ocasionally throbs. Ocassionally get minor numbness and tingling in arm, leg, thigh, back. I also have a cough I can not get rid of. I have always felt fatigued since having a child. I thought that was normal. My Neuro recommends Copaxone, Betaseao. Aeonox, or Refib. I am excited to talk and meet with everyone.
Hi niki. My name is Nikki, too...
Im sorry to hear about your diagnosis- but you will survive this, we all have! You will be around for your grandchildren and if more children are really what you want, then the option of not starting meds right away is there....
MS is a very tricky disease, it doesnt always progress, although it is progressive. In the 14 months I have had it, I havent progressed at all-
Relapses, new symtoms and occasional bouts of "bad days' are a part of the disease, however they do not always mean progression. I take Rebif, one of the drugs you mentioned...I love it. Its 3 days a week and it takes me 10 minutes from start to finish and I go on with my day/night. IN the beginning there are side effects to almost all the drugs...with the interferons (rebif, avonex and betaseron) they DO go away....with copaxone, you wont have the flu like symtoms, but many people dont like injecting every single day and alot of people complain of injection site reactions...its a toss up....but if you decided you wanted to get pregnant now, and wait to start the drugs after you deliver, no one would blame you.
You mentioned white streaking in the MRI, thats not MS; however, lesions, which appear as white dots- do indicate MS when they have the size, placement, etc. Some lesions can be caused by headaches, migranes, brain trauma, etc and have NOThing to do with MS....are you 100% sure of your dx? Do you trust your doctor completely? Many of us see regular Neuros in the begining and go on to find MS specialists who help us thru more specific MS issues...you might want to see one for a second opinion if you have doubts...
Meanwhile, denial is a lousy place to be- and MS is NOT the end of the world...welcome to our world of support and if we can help you, please shout out.
PS I spent a year in Cleveland TN as well as Soddy Daisy and Chattanooga...its a wonderful place to live with excellent doctors in nearby areas. Take advantage of the excellent health care which is offered there and see every specialist you can!
Welcome aboard. I have had MS for 25 years now and I am blessed each and every day of my existence. I can well imagine how fatigued you must be with a rambuncious 4 year old. If you are planning on more children, please discuss this with your neurologist and OB/GYN so they can best assist you. MS does not end your life, so keep on keeping on!
Its great you have found this board. I too have kids. A 10 and a 4 yr old . I was dx 7 yrs ago. Stopped my meds to have my 2nd child, but back on them now. I'm on the Avonex which is once a week injection, just had it 1hr ago actually. Wednesday's are my day.
Research you options on meds, take you time and see what you think will work for you.
I've only had one major relapse that knocked me off my feet since being diagnosed. No new lesions on my MRIs; so no progression for me either. I cant really complain for that. I just learn to rest when i feel fatigued at all. I just try to eat healthy, although i cant resist chocolate on occasion.
Welcome to our cyber family. Hope we can help you with any support.
Thank you for responding. The neurologist advised there where only 3 new bright streaks on my MRI. On the spinal tap results. The proteins that i am suppose to be at .10 and mine were 72 he advised they all were way too high. After reading entries on this site I did call my Neuro yesterday and I am going to go to Nashville and see a MS specialist. All the information and opionions I get get the better. Thanks for the info. Keep in touch
Hi Niki. Glad to hear you are going for another opinon...its important that you are SURE but also that you are comfortable with this diagnosis. The diagosis WONT kill you, but the anxiety worrying about it can send you over the edge. We know, we have all been where you are....
Try NOT to worry. I know easier said than done, but really try NOT to...it wont help you and in fact will aggravate anything that is going on in your body..
Do things to keep yourself busy, watch lots of stupid TV or movies...hang with people you love and who love you....but whatever you do, no pity parties yet...I promise you, even if it is MS- your life isnt going to change overnight and it might NEVER change....we with MS manage - trust me on that.
Most of all, the best advice I will give you is really understand what the doctors are saying to you...there isnt probably or early MS. There is MS or not MS and there is criteria which must be met in order to diagnos MS. Because the criteria is high, many doctors are hestiant to make the dx...read up on McDonald criteria to understand more about the disease...
Elevated proteins are not good, but can be a sign of infection, lyme and other things besides MS....streaks on the MRI, Ive never heard of..the correct wording is lesions, and the placement and size/shape is what differentiates MS from a migrane type lesion...a good neuro can tell the differnce- a MS Specialist knows what he is looking for....there are also evoked potentials which can dx MS, but they arent the first test done usually unless there is alot of muscle or nerve issues going on.....
Hang in there and keep us posted. we are here if you need us.
I was diagnosed a year and a bit ago with MS and I was in denial for quite along time. Pehaps it was because I was scared and didn't know what my future held for me. The best thing that I did besides educating myself was logging on and becoming a member of this board. I am not afraid anymore and I have a good life. Besides a major flare up two years ago, I have been doing great! I am sorry for the fatigue that you are feeling, I know it all too well!
I have read all the other posts and you have recieved lots of good advice, good luck to you Niki and I look forward to chatting with you in cyber space