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Confirmed Diagnosis
Alright! Finally, we are getting somewhere. November, I lost vision in one eye due to optic neuritis and numb toes so, that sparked my very first brain MRI. The diagnosis was "probable MS" and ordered to start Copaxone. 2 specialists later, an evoked potentials, lumbar puncture, and Spinal MRI I have now been told, "MS Confirmed, Lyme disease negative, and B-12 deficiency level of 201 out of a "normal" scale of 211-911".
Okay. Now I'm ordered to start B-12 shots once per wk for 6 weeks then, once a month for ??? ever? I don't know.
I thought I would be relieved to know 100% that this was MS since I have been STICKING myself every single day for 3 months. Bleeding, bruising, burning, annoyed, angry, and sad... but, it's not comforting at all.
I know so many of you go undiagnosed for lack of this or that in one of your many testings... and I feel like I should be grateful... but, I'm not. The certainty of these tests must mean that the evidence is powerful, right?
I feel like I'm about to start the grieving process all over again *sigh*.
When I first found out last Nov. that this was the suspicion, I told very few people. Everyone said, "I'm so Sorry" like I just lost a family member. I guess that's how I feel. The responses are never, "oh, it'll be ok. You'll get through this. There are worse things." It's always, "I'm so sorry.".................
I hate having to tell my boss that I need a day off work to go have this test or that test. That I'm having extreme headaches, pain in my legs and hips, can't work as fast as I did a year ago because I...forgot... what... I was about... to do. I hate feeling judged and pitied. I hate not being able to go to the gym and stop WHINING ABOUT MY WEIGHT. I hate it when I hear or see my old friend from HS on Facebook doing great things, visiting other countries, traveling, having babies, joining competitions, etc... and I have to consider how I am feeling that day before planning anything like that. I hate that I can't just get up and go spend the entire day out on the boat with my husband because too much of the heat or the cold makes me a miserable person to be around... most importantly, I hate having to be seen in his eyes as a 70-yr old woman when I will be only 32 next month - due to all the DR appts and new symptoms that need to be checked out. That hurts. It all hurts.
I just needed a place to get all this out. Sorry if its a "downer" to read. It's better for me to get it out here than to bring down my family or hubby with all these emotions.
I have now officially started traveling on a new road in my life. One that others have been traveling for years. One that I never thought I would be on. One that has no "dead end," but also no exact destination. A road map can't tell me where I'm about to go...
Okay. Now I'm ordered to start B-12 shots once per wk for 6 weeks then, once a month for ??? ever? I don't know.
I thought I would be relieved to know 100% that this was MS since I have been STICKING myself every single day for 3 months. Bleeding, bruising, burning, annoyed, angry, and sad... but, it's not comforting at all.
I know so many of you go undiagnosed for lack of this or that in one of your many testings... and I feel like I should be grateful... but, I'm not. The certainty of these tests must mean that the evidence is powerful, right?
I feel like I'm about to start the grieving process all over again *sigh*.
When I first found out last Nov. that this was the suspicion, I told very few people. Everyone said, "I'm so Sorry" like I just lost a family member. I guess that's how I feel. The responses are never, "oh, it'll be ok. You'll get through this. There are worse things." It's always, "I'm so sorry.".................
I hate having to tell my boss that I need a day off work to go have this test or that test. That I'm having extreme headaches, pain in my legs and hips, can't work as fast as I did a year ago because I...forgot... what... I was about... to do. I hate feeling judged and pitied. I hate not being able to go to the gym and stop WHINING ABOUT MY WEIGHT. I hate it when I hear or see my old friend from HS on Facebook doing great things, visiting other countries, traveling, having babies, joining competitions, etc... and I have to consider how I am feeling that day before planning anything like that. I hate that I can't just get up and go spend the entire day out on the boat with my husband because too much of the heat or the cold makes me a miserable person to be around... most importantly, I hate having to be seen in his eyes as a 70-yr old woman when I will be only 32 next month - due to all the DR appts and new symptoms that need to be checked out. That hurts. It all hurts.
I just needed a place to get all this out. Sorry if its a "downer" to read. It's better for me to get it out here than to bring down my family or hubby with all these emotions.
I have now officially started traveling on a new road in my life. One that others have been traveling for years. One that I never thought I would be on. One that has no "dead end," but also no exact destination. A road map can't tell me where I'm about to go...
I can SO relate to your vent. My MS diagnosis was also confirmed this month. It doesn't matter how long I knew something was wrong. It doesn't matter how long I suspected it was MS. It doesn't matter how prepared anyone is. You can't grieve until you lose something.
Having all the doctors come together in agreement on the diagnosis has laid to rest the little rays of hope I had harbored that someday I could and would return to the old normal me. I'll be working on new hopes soon. For now I'm still feeling the anger of forever lost vitality, the loss of ease and enjoyment of physical activity, and the detour of so many things I anticipated for this stage of my life.
I'm getting to be an old fart though and many of my non-MS friends will catch up to me in limitations before too long. I have extra compassion for all of you who are dealing with MS early on in your lives.
Please don't worry about how your sharing sounded. We all need to know that something about us is normal. Apparently our reactions to the MS diagnosis fit into that category.
I would encourage you to share your feelings with your husband. I don't know that spouses can really understand what it's like for us. Then again, we can't understand the difficulties they have been forced into either. It's a time to share, not shelter.
Here's to new normals.
Mary
Having all the doctors come together in agreement on the diagnosis has laid to rest the little rays of hope I had harbored that someday I could and would return to the old normal me. I'll be working on new hopes soon. For now I'm still feeling the anger of forever lost vitality, the loss of ease and enjoyment of physical activity, and the detour of so many things I anticipated for this stage of my life.
I'm getting to be an old fart though and many of my non-MS friends will catch up to me in limitations before too long. I have extra compassion for all of you who are dealing with MS early on in your lives.
Please don't worry about how your sharing sounded. We all need to know that something about us is normal. Apparently our reactions to the MS diagnosis fit into that category.
I would encourage you to share your feelings with your husband. I don't know that spouses can really understand what it's like for us. Then again, we can't understand the difficulties they have been forced into either. It's a time to share, not shelter.
Here's to new normals.
Mary
Thank you everyone, for your sypathising and reading my vent session. I do appreciate your kind words.
Honestly, I thought I was over the initial shock back in December. I thought I had gotten all the anxiety and anger, depression and worry out of my system. I was a willing participant for acceptance of MS. I've gotten through working 8 hrs a day not thinking about the disease until my Microsoft Outlook calendar reminder notice pops-up every day at 12:30 to remind me to put my work second for 15 mins to prep and inject.
What is it about the absolute certainty of my Dr. that shook me up again?! Crazy. I don't understand this emotion, but as you all promised, and I know too, I will get over it and life will get better :)
Lu :)) Thank you, thank you. For putting my situation to light with your statement, "we don't really know how anything in our lives is going to end..." you are so very correct. We take risks every day with things like adventure, marriage, buying a home, etc... without certainty for fun, profit, or guarenteed love. :) Thanks. That made me feel better, to realize this is true.
Shell and Ren - Thanks for the HUG :) I needed one today!
and to Mistylee, you are so positive. Thanks for the reminder. I just had a bad day I guess.
Thanks again for listening, everyone.
Honestly, I thought I was over the initial shock back in December. I thought I had gotten all the anxiety and anger, depression and worry out of my system. I was a willing participant for acceptance of MS. I've gotten through working 8 hrs a day not thinking about the disease until my Microsoft Outlook calendar reminder notice pops-up every day at 12:30 to remind me to put my work second for 15 mins to prep and inject.
What is it about the absolute certainty of my Dr. that shook me up again?! Crazy. I don't understand this emotion, but as you all promised, and I know too, I will get over it and life will get better :)
Lu :)) Thank you, thank you. For putting my situation to light with your statement, "we don't really know how anything in our lives is going to end..." you are so very correct. We take risks every day with things like adventure, marriage, buying a home, etc... without certainty for fun, profit, or guarenteed love. :) Thanks. That made me feel better, to realize this is true.
Shell and Ren - Thanks for the HUG :) I needed one today!
and to Mistylee, you are so positive. Thanks for the reminder. I just had a bad day I guess.
Thanks again for listening, everyone.
Hi, I don't believe we've met either but I wanted to add my two cents having been diagnosed less than a year.
As Lu said, you have accurately described what getting the diagnosis feels like. I , too, got the "I'm so sorry responses" especially at work. They just didn't understand the illness. Educate those who respond to you like that and remind them that every MS patient is different and very few MS'ers wind up in wheel chairs these days due to improved treatment plans and drug regimes.
Your life isn't over it's just different. Trust me after the initial flurry of doc appts things will settle down and you will have "normal" days again and you will be able to make plans in the near future and keep them!
Hang in there and things WILL get better! Until then come here and talk to us. We understand.
Big understanding hugs,
Ren
As Lu said, you have accurately described what getting the diagnosis feels like. I , too, got the "I'm so sorry responses" especially at work. They just didn't understand the illness. Educate those who respond to you like that and remind them that every MS patient is different and very few MS'ers wind up in wheel chairs these days due to improved treatment plans and drug regimes.
Your life isn't over it's just different. Trust me after the initial flurry of doc appts things will settle down and you will have "normal" days again and you will be able to make plans in the near future and keep them!
Hang in there and things WILL get better! Until then come here and talk to us. We understand.
Big understanding hugs,
Ren
Hi Mayperl,
Just wanted to say I am feeling for you , and know exactly what you mean although I'm only a possible MS but awaiting test results that could confirm all this.
One thing I'm learning is to stay positive despite everything , theres so many out there a lot worse off and that makes me feel thankful. It has been a long 4 years for me and counting. My life as I knew it has changed but its not over !!! Its just the new me and my life has changed direction but that doesn't mean it won't be any less fun!!!
I am determined to make it work and get the best out of it.
Sending hugs your way!!
Mistylee
Just wanted to say I am feeling for you , and know exactly what you mean although I'm only a possible MS but awaiting test results that could confirm all this.
One thing I'm learning is to stay positive despite everything , theres so many out there a lot worse off and that makes me feel thankful. It has been a long 4 years for me and counting. My life as I knew it has changed but its not over !!! Its just the new me and my life has changed direction but that doesn't mean it won't be any less fun!!!
I am determined to make it work and get the best out of it.
Sending hugs your way!!
Mistylee
Hi there,
I don't think we've met yet, so I'm saying hello, and sending you a cyber hug.
This dx can come with a lot of physical and emotional stress so take the time you need to exhail and wrap your head around it all - we'll be right here cheering you on no matter what your feeling.
I promise it can and will get better than this. You'll get back on that boat w/hubby and and it's going to feel great when you do! One tiny moment at a time....
Here for you!
-shell
I don't think we've met yet, so I'm saying hello, and sending you a cyber hug.
This dx can come with a lot of physical and emotional stress so take the time you need to exhail and wrap your head around it all - we'll be right here cheering you on no matter what your feeling.
I promise it can and will get better than this. You'll get back on that boat w/hubby and and it's going to feel great when you do! One tiny moment at a time....
Here for you!
-shell
My dear Mayperl,
You join us on the other side of this mountain - climbing to here is never easy. And I think almost all of us go through the shock, dismay, elation/depression that you describe so well.
It is a tough new reality to live with - but you can live with this. I hope that now that you know the name of the MonSter you are battling, the doctors will equip you with all the necessary tools, knowledge and confidence to take this on.
There's nothing "down" about what you wrote- it's just an honest appraisal of the situation you now find yourself facing. I really like your analogy of this not being a dead end road, but having no known destination. It is so fitting and that is perhaps the worst part of this MiSerable disease - not knowing how this ends.
But if you think about it, we don't really know how anything in our lives is going to end so we can just lump this in with all the other uncertainties.
We're here for you - we're traveling this road together.
lots of hugs and love sent your way,
Lulu
You join us on the other side of this mountain - climbing to here is never easy. And I think almost all of us go through the shock, dismay, elation/depression that you describe so well.
It is a tough new reality to live with - but you can live with this. I hope that now that you know the name of the MonSter you are battling, the doctors will equip you with all the necessary tools, knowledge and confidence to take this on.
There's nothing "down" about what you wrote- it's just an honest appraisal of the situation you now find yourself facing. I really like your analogy of this not being a dead end road, but having no known destination. It is so fitting and that is perhaps the worst part of this MiSerable disease - not knowing how this ends.
But if you think about it, we don't really know how anything in our lives is going to end so we can just lump this in with all the other uncertainties.
We're here for you - we're traveling this road together.
lots of hugs and love sent your way,
Lulu
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