Hope all is well with everyone. I've had a pretty crazy day, amongst all the poop at work, I got a call from my hubby saying our orders to our new base were on hold because of my medical records being flagged.
I called the medical clinic immediately got an appt. No one would tell either of us anything, but when they handed me the paperwork for enrollment in the "Exceptional Family Member Program" I had a pretty good guess why.
I saw my primary doc and he reviewed my records wanting to know why I hadn't had an LP done. I said I was told it was just another test to be done, and since I wasn't comfortable with my off base doc, I'd figured I would just pick up the testing at my next base.
Apparently though because of my last bout of vertigo and eye issues, my MRIs and VEP had been reviewed again along with my symptoms, and the clinical determination was that I have MS. I was told I might still need the LP to confirm, but that it was evident from symptoms and MRIs and history this was the diagnosis.
I will now be "labeled" by the military to ensure we only move to places with proper care. I also have to see a neuro at least twice a year, unless I have an issue then it will be more. This way they can track my progress or decline, if you will.
I feel relieved in some way to have an answer. I feel sad in others -- none of this will shock anyone here, I'm sure we've all felt it. I am anxious about our move now. We are less than two months from moving and this could be a big stopper if they can't care for me at the new base. I'm hoping since we are moving only an hour away it won't be a big deal, but I can't help but feel guilty that I could screw everything up for my husband and family.
My hubby doesn't care though. He's more worried about me. He hopes the orders come through, but said it will all work itself out. He's so wonderful. I feel really blessed to have him. I can't decide if I should tell my daughter ... she's only 10 ... should I really lay this on her? I don't want to scare her.
Anyway, thanks for letting me rant. I appreciate everyone's support.
Impressed the military didn't toss you into a corner and forget you. They put forth the time, effort and expertise to get you on the road of diagnosis and treatment. Doesn't make the news easier to sort through but i'm glad they respected you enough to listen to you and your symptoms and solve your case.
Sounds like you have a good man standing next to you, you two hang on to one another. Good luck to you and your family with your move.
I'm glad the military is being so useful and that you've got such a wonderful, supportive spouse. Those are the two things you need most...well, that and probably some DMDs. I hope that all of your feelings get settled and that you and your family do, too, and soon.
Having just gotten my diagnosis in April I can tell you I went through a roller coaster of emotions. Relief to get a diagnosis, sadness, fear, anger, depression, and even some good ones to.
I only see my neurologist twice a year. I had military health care from the time I was born until I finished college. I had very good care. Now I pay a whole lot for care and sometimes get pretty crummy care.
The MS Society has a brochure on telling children you can get it on line.
It is good to hear that the military medical system works sometimes, and is working for you. I'm so sorry you have this MiSerable disease, but am glad it has been officially named so you can get on with your treatment.
When do you see your neuro next? Did they give you information on the DMD's to pick one to begin? I sure hope they didn't give you this news and then just leave you hanging.
Where is your next assignment going to be? Hopefully the move will still happen since it sounds like you are looking forward to it as well. An hour isn't too far to drive to medical help - I go more than that for my neurologist.
Anyway, welcome out of limbo - I hope you will stick around and ask questions and vent and hang out with us as you see fit.
So sorry to hear of your dx, but glad you now have some answers for your symptoms. It sounds like the military is taking good care of you and your well being.
As far as telling your daughter, I would let her know what is going on. She "probably" already knows something is going on, and I would talk to her. You can get some good info from the national MS society like Alex said, regarding telling your children.
Well, you finally got a name to what is happening in your body. It is an end to your searching, but the beginning of a new journey. I hope they won't take too long in getting you started on medication. What is the next step?
They said they may want to do an LP to confirm the diagnosis? Why? We all know that LPs don't confirm anything but just add to the clinical information if it is positive. But if that is what they want, eventually, then you might have to do it.
As far as your daughter and when the right time to tell her, well, there is really no right time. Maybe let the news sink in first and then you will know when the time is good. She is 10 and t0 year olds are pretty sharp these days. I hope you all will have a good and positive disucssion when the time comes.
Please know that we are all here for you anytime and in any way you need us.
Thank you so much for your responses. It has been so nice not to be alone in this process. You are all such a blessing.
As for meds, I have to go see a neuro for that they said. My PCM won't touch me with a ten-foot pole at this point. He said I need to see the neuro for that discussion. I am not sure when the next appointment will be as everything is up in the air with our move and who will provide my care. It's nice to have a diagnosis, but rotten timing with our move because everything is so delayed. They seem to feel confident that it's okay right for the moment because other than the vertigo which they treated.
And I know that some expressed concern about why they'd still want to do the LP when my record clearly states the clinical diagnosis. I will talk to the neuro about that. That was just a heads up from my primary care. I hope they don't have to since we do know that it may not show anything, but the MRIs did. Certainly those and my long list of quirky symptoms were enough for them to confirm and give it a name finally. I really don't want to have extra procedures done if they aren't necessary. I know a few who've been confirmed without the LP and they didn't have any terrible episodes preceding their diagnosis. I'm thinking that maybe it's just the judgement of whatever doc you are seeing.
Thank you all so much for your support. It's been invaluable. I will definitely be staying with this group because it's nice to have someone understand what you are going through. My husband is a huge support, as our family is as well, but unless you've experienced it it is really hard to fully understand it.
God bless you all. Take care and you are all in my prayers.
hi can relate to your story i have just been diagnosed and was wondering wheather to tell my 11yearold son or not, it was the worst day of my life my son broke his heart crying for an hour solid he is very sensative and i wished i hadnt told him once i did its a difficult one as i needed to prepare him for the future and did not want him to over hear anyone discussing me and ms,my mum had ms and passed away in 88 there was not alot of meds around then and my son knew that his grandmother had ms this made it worse for me to tell him although he is fine now and has acepted it as he knows i am waiting to go on a med to slow it down,i also wanted to make him realise that he has to learn to do alot more on his own and it has although he moans now and then about doig it and says when are the doctors going to help you mum, i am waiting to start a med called rituximab as i have bad arthritis and have to go on something to treat both so i hope this helps you make your mind up all the best with the future,maggs
Thanks for the advice. It is a difficult thing to talk to kids about. We are going camping this weekend in the Alps ... a nice getaway for us all. I think we may start discussing it after we return. I want her to see that while it may effect some of my abilities, for now, she can still expect mom to be mom. I don't want her to only think about the bad. My husband and I will have to play it by ear on exactly when to tell her.
It is hard for them for sure. I'm sorry about your mother. I'm sure it was very hard for you both. My prayers are with you.
Have a wonderful weekend in the Alps. Just be careful doing your Julie Andrews impersonations. That bit where she twirled on the mountaintop and sang "The Hills Are Alive" might make your vertigo worse.
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