New & Alone

[Solipsist]

I am a 27 year old single female with an 8 year old daughter. I work, go to school, and have an internship. I was officially diagnosed in January 2013, though the episode began on Thanksgiving Day 2012. I woke up with my left eye completely turned out, with no ability to control it. I had to close it/cover it to see straight and ended up wearing an eye patch and feeling ugly from November until February 2013 when it returned to normal. Immediately after the initial eye symptom, I went to the ER where they did a CT scan and spinal tap and ordered an MRI for outpatient, but didn't really tell me what was suspected until I went for my MRI results, and even then they said they couldn't tell me for sure (all I knew was those tests were serious, and some jerk doctor popped in my room for 30 seconds to say "You have a spot on the left side of your brain"). So after my initial ER visit in November 2012 until December 2013, I had no diagnosis or treatment. My symptoms grew worse until I was drooling, could not walk or speak well at ALL (the only thing I can compare it to is being more drunk than I think is possible...I also work on the telephone so I had to take a few months off). I could not taste anything at all and eating/drinking anything was disgusting. My mom ended up taking me to a different hospital (University of Michigan) where they gave me an IV treatment right away and a script for prednisone - and a DIAGNOSIS. All of the symptoms but the eye went away within days (and as I said the eye resolved itself shortly after).

I was hooked up with the U of M MS Clinic and the doctor quickly went through the medications with me without much collaboration. I remember her saying of my 2 strongest options, one was bad for young people because of potential liver damage so she prescribed me Rebif. Had I been informed the injections were 3 times a week, I would have protested, but I feel I was too uninformed and just pushed in one direction. I don't know much about the medications, but I do know I am having a hard time finding the courage to do my injection. As it is, I simply cannot do it myself even with the auto-injector and I make my brother who lives with me do it. My boyfriend was doing the injections for me until a month ago when he suddenly broke up with me; he provided a level of comfort during the process that I don't have anymore and I really need advice about changing medications. Of course I am going to speak to my doctor about it, but I don't know if I am being stupid and wanting to switch from a "good" medication to one that won't be as good. I have such an irrational fear of needles I make my mother hold my hand if she happens to be with me at the hospital. I can't imagine overcoming the fear enough to be able to take care of myself NOW. I apologize for the length of my post, but hoping to find some support here. Thank you.

[ljelome]

Hi Solipsist, sorry to hear ur diagnosis, but don't loose ur hope though.
I had an MS diagnosis when i was 28 yo, my symptoms appeared more than 2 years before the diagnosis.
Thank God, i have a very helpful husband to be my nurse everytime i have my Rebif's injection.
I hope u will find a caring n helping partner to help u soon. I can't help u, but there's Someone who'll never leave ur side n He won't let u be alone, just ask Him.

I hope what ever meds u're choosing won't make any harmful side effects for u. But there's a more healthier options, such as healthy diet, supplements, exercise, etc. U'll find lots of information about those stuff here and there's many people here who can help u with that.

All the best wishes for u.

[Cholderby]

A friend of mine had a bad experience at the U of M clinic. His doctor ended up leaving the U and advised my friend to find a different practice.

I can imagine how awful t must feel to not be in control of your care. But you can be! Read everything you can (I should add that I am more newly diagnosed than you) and go back or - better yet - find a neurologist you like. The MS Society has a referral program. I switched to Henry Ford because I had a bad experience with my first neuro (but, again, I can't really give them an endorsement since I've only been there twice).

I'm in the process of weaning my baby so I can go on dmds. But, because I really don't want to it is a REALLY BIG DEAL. it isn't, of course, but that's my attitude towards it because I deal like I'm not in control and have no choice. Doing a bunch of research so that I knew all of the pros and cons inside out made me feel a little better about it because it became my choice. Ok, that sounds dreadfully Pollyanna, but my attitude did change. HTH.

[Solipsist]

ljelome, I appreciate the sentiment but we just broke up a month ago, and knew each other for over 10 years, so thinking about finding anyone who would care and help isn't really healthy for me right now. You are indeed lucky to have your husband. Also I'm not religious so I can't find comfort there. Proper diet and exercise are wonderful, but I think it can be misleading to say they are MORE healthy than medication which has been scientifically tested and tried. I've already seen a number of comments on this forum from people shunning medication and directing people to "natural" therapies, which is a bit scary. It reminds me of how my mom went to Google after my diagnosis and insisted I must have gotten MS from drinking Monster.

Cholderby, I'm curious what the experience was. It's nice to see another Michigander. I went to Chelsea Community first who didn't treat me at all, and I went to St. Joseph Mercy in Ypsilanti for an earlier exacerbation (they ignored the week-long symptoms I described that had resolved by then, and simply diagnosed me with Bell's Palsy with no MRI because the left side of my face was paralyzed). I've had bad experiences with U of M ER, but they're the best of my options so far I think and I definitely hold them in a high regard being from the Ann Arbor area. I don't drive and I don't have many people in my life to give me rides to the doctor so I have to stick with a place I can get to by the Ann Arbor bus system.

[Cholderby]

That probably would be your best option then. My friend went to Beaumont and the U of M. Nothing bad happened, really. But his neurologist left to go elsewhere and advised that he should too. Maybe that was internal politics, idk.

I've read so many stories of people who spent months in medical limbo with misdiganoses. Somehow, I managed to get a first and second opinion within 36 hours (one at Providence, one at Henry Ford). I think someone must have canceled. I certainly feel lucky.

I did end up at the Henry Ford ER in downtown detroit before that. No disrespect to the staff, they did fine, but that experience resulted in many stories my husband and I will be telling for years...yeah.

[jimmylegs]

hi s, you may find this non-pharm therapeutic info more appealingly scientific than the monster thing
http://www.thisisms.com/forum/regimens- ... c2489.html

[CaliReader]

Hi,

Best of luck.

I don't have much to add here except to say that there are now three ms drugs in pill form that are licensed in the US.

Given your phobia, you could ask about them.

Good luck.

[want2bike]

Roger MacDougall did very well with diet in treating MS. Dr. Walhs did well with diet in treating MS. Dr. McDougal sites a study in England showing those doing the drugs do worse than those who do not do the drugs. You should reconsider the effect of food on the body. Your choice of food will effect your bodies ability to heal itself.


http://articles.mercola.com/sites/artic ... nking.aspx

http://www.franksherwood.com/tnms.htm