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Just diagnosed 7-11-07

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Posted 7/31/2007 3:16 PM (GMT 0)
Hi,

 

I've never really "chatted" before today.  So bare with me.  I'm 33 years old, I'm engaged and we have a two year old beautiful daughter.  I was working full time until my life as I've known it came to a stand still.  This is all very overwhelming and frustrating.  I have four lesions on my brain two on the left side and two on the right side, I have two lesions on my neck and three on my spinal cord. I haven't even been given an appointment for my neurologist since being released from the hospital over a week ago.  I call just about every day.  So they hurry up to tell me I have MS and now nothingness.  Just feeling my way through all this.  My symptoms, blurred vision, migraines, numbness/vibration in legs and feet and aching of my wrists have gotten less but are definitely not gone.  I'm tapering down on predisone so I feel "crazy" at times ( specifically right now).   

 

Some of my family are acting like I won the freakin lottery or something b/c I'm not working.  My mom has already laid it on me what a burden its gonna be until I get back to work or get on disability.  It really devastated me.  The sad thing is that they have plenty of money, no millionaires but they certainly won't be eating beans if they have to help us out for the next two months. 

 

I don't think this all will really gonna hit me until I give myself my first injection. 

 

Any words of advice or just to hear others stories help...

Posted 7/31/2007 3:49 PM (GMT 0)

I'm so sorry about your diagnosis!  It's strange that you're not seeing a neuro.  What doctor diagnosed you, someone in the hospital?

The prednisone can really give you emotional instability, which may be some of your problems right now. 

What kind of work do you do?  There are folks with MS who still can work. It's a challenge, especially juggling a child and home responsibilities, but if you feel able to do it, it really is a good thing to keep working as long as you can.  Have you used up all your sick leave? Or perhaps you work in a large-enough company that you'd be eligible for Family and Medical Leave Act -- that's unpaid, but at least your job will be held until you feel well enough to get back to it. 

You should also be thinking about ways your company might make some reasonable accommodations so you can keep your job, if that's necessary.

Tell us more about your situation, and maybe we can offer some suggestions.

Posted 7/31/2007 4:22 PM (GMT 0)
I was seen by a neuro Dr. Logan at St. John's Mercy. He then went on vacation. So a different neuro discharged me and gave me a card. I want to see Dr. Green who is in the same group as the other two but specializes in MS. Dr. Logan said he was fine with me seeing Dr. Green but they had to wait til he was back from vacation. That was supposedly yesterday. Still no call today. They gave me a ms nurse names who is supposed to be supportive and a "go to" person. Well she's pretty dry and makes me feel like I'm not real bright if ya know what I mean.

I'm a Probation and Parole Officer. I am on FMLA for at least three months. Beginning mid August I will have used all my time. With having a toddler its been hard to accumulate time. Do to the type of job and the type of symptoms I don't think at this time I will be returning but at least its an option. I want to raise my daughter. As long as I can get some sort of disability I think that we will be able to afford for me to stay home. With getting this diagnosis, I feel selfish but this is what I have wanted since she was born to be her mom and help her grow so at this point I"m taking it.
Posted 7/31/2007 6:57 PM (GMT 0)

Sky2 said...
I was seen by a neuro Dr. Logan at St. John's Mercy. He then went on vacation. So a different neuro discharged me and gave me a card. I want to see Dr. Green who is in the same group as the other two but specializes in MS. Dr. Logan said he was fine with me seeing Dr. Green but they had to wait til he was back from vacation. That was supposedly yesterday. Still no call today. They gave me a ms nurse names who is supposed to be supportive and a "go to" person. Well she's pretty dry and makes me feel like I'm not real bright if ya know what I mean.

I'm a Probation and Parole Officer. I am on FMLA for at least three months. Beginning mid August I will have used all my time. With having a toddler its been hard to accumulate time. Do to the type of job and the type of symptoms I don't think at this time I will be returning but at least its an option. I want to raise my daughter. As long as I can get some sort of disability I think that we will be able to afford for me to stay home. With getting this diagnosis, I feel selfish but this is what I have wanted since she was born to be her mom and help her grow so at this point I"m taking it.

I hope your doctor situation gets worked out!  Summer is a challenge with everyone taking vacation at inopportune times!  Presumably he'll review your medical records and get you starting on one of the injectible drugs -- Avonex, Betaseron, Copaxone, or Rebif.  Once you get some information about those, come back and ask: many of us are on one or th other of them, and could offer some opinions.

It sounds like you might have some good benefits attached to your job?  If you've used up all the FMLA, it's likely they'll ask you to go on disability (assuming there is a disability plan connected to your employment).  You might also start investigating SSDI, social security disability income.  You've probably worked long enough (roughly 10 years having paid into the social security system) that at least you'd pass that first hurdle of whether you're even eligible to apply.

You probably need to be talking to the personnel person, or human resources person, or whatever they're calling him these days, to see what your next steps should be.  Lots of those programs have deadlines, and if you miss the deadline you can miss benefits you should be getting.

I hope all this gets worked out for you and you can be concentrating on getting well and taking care of your little one.

Posted 7/31/2007 9:02 PM (GMT 0)
I was diagnosed in May of this year and can understand what you are going through. I like that you see the blessings in your diagnosis and not just the grim facts. I am a single mom and was holding down 3 jobs and going to school when I got my diagnosis. I had to struggle with the decision to give up my extra jobs and stop school so that I could recover. I don't have the nightmare with getting appts but I found that doctors have personalities which make them the wrong choice for me. Don't be afrain to take control and stand up for what is right for you. I wish you the best of luck with life. Always remember...you may have MS but MS doesn't have you. You have one life and you must live it to the fullest. The only things you cant do are the things you tell yourself you can't do. Oh yeah and go out in the heat :-)
Posted 7/31/2007 10:17 PM (GMT 0)
Thank you so much for your words of encouragement!! Also for an understanding that I"m not out here alone experiencing these things.
Posted 7/31/2007 10:21 PM (GMT 0)
Thanks uppitycats!  I am definitely gonna look into the criteria for ssI etc.  I am covered from my job for the next three months for insurance and holding my position.  Hopefully that will give me enough time to figure out long term disability and SSI stuff.  Thanks for taking the time to respond.  I think I would have felT just awful if I had sent something and no one cared.  :)
Posted 8/1/2007 1:37 AM (GMT 0)
Hey Sky2

Welcome to the board! Wow...what a ride u've been on. I"m so sorry!! Do u have daily childcare for while u'r dealing with these symptoms?? I really hope u do, but if not, be sure to try to get the stops and rests where u can. Having a toddler can be enuf, but added to that picture, MS...well it will be absolutely horrible without help. Get that help where u can and lean on whoever will let u for now. I know u must feel u need to get back to 'normal', but at this point u just need to get better. I'm so sorry for the run around u'r getting from the docs, but hang in there...keep calling and pushing and get that appt set! U need to be loud and not let them forget about u.

I'm so glad u found this forum and hope u'll find as much support and care and answers as we've all found here. We have some wonderful people here and all are willing to do what they can to support u. Lean on us as much as u want and need. We'll be here for u. Also, we have live chats on Mondays at 6:00pm each week. It's a great chance to get some real time answers as well as get to know some of the other members. We'd love to have u join us! Take such good care of u'rself and feel free to ask anything u want...we'll all try our best to help out.
Posted 8/1/2007 10:37 AM (GMT 0)
Rhonda,

I will defiintely join in the chat on Monday evenings! Sometimes its so hard to feel what people mean through the computer but your words really put me at ease and made me feel more comfortable to express myself.

Thank you so much!
Posted 8/1/2007 9:04 PM (GMT 0)
Hi Sky,

 

    Welcome to the forum.  I'm sorry for your recent diagnosis, sounds like it was an out of the blue kind of thing.  Please feel free to vent your frustrations here if you like.  We are all here to support each other and it really does help to get it out. 

 

    Give yourself some time to adjust to all of this.  I'm glad you are feeling a little better after the steroids.  Take whatever help you need and try not to let other family members get to you.  You gotta do what's best for yourself and that sweet little girl of yours. 

 

    I hope to see you in chat sometime, and you did great for your first time posting tongue

 

Kimber

Posted 8/1/2007 9:46 PM (GMT 0)
Hi Kimber,

Thanks for not making me feel crazy! I feel so lucky to have found the forum. Everyone has been so encouraging. Right now I really need it. It feels as though family members are being so judgemental and think I won the freakin lottery or something b/c I'm off of work. To tell the truth I'm working harder now than I did as a Probation and Parole Officer. I have my two year old who is healthy and active as she should be and b/c I was off my rocker, I bought a 10 week old boxer puppy two days after being dianosed over the phone. So between the two of them there is very little time to rest. The puppy is a mess with potty training which is driving me crazy cuz I'm sort of a germ a phobia. Then my lil bits, I feel guilty that she hasn't been outside more lately in her lil tiny pool and stuff. I do have some great co workers that have set up play dates for their kids around her age to come over and play and visit with me. It helps to make things seem sort of normal. I have such a weight on my shoulders regarding disability and insurance. I'm a young 33 and unfortuantely don't know much about policiies ext. But I've been on the phone today and am getting a quick education. I have to keep reminding myself to take one day at a time and have faith.
Posted 8/2/2007 3:12 AM (GMT 0)

Hey Skye,

Welcome to the board.  I am sorry to hear of your diagnosis.  It does take a while to wrap your head around something like MS. Good luck with everything you are going through.  Feel free to ask as many questions as you need to especially if you start a progression therapy.  Kiss that baby girl for all of us and enjoy her.  Keep posting and let us know how you are doing.

Love and prayers,

Posted 8/2/2007 12:27 PM (GMT 0)
Awww thanks for your response. This insominia is getting the best of me. So without you guys I don't think I'd manage to smile the entire day. It really means alot!!!!
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