Aa
My doctor says I have MS :-(
I had a real jolt today. I have a Rehab. Specialist that I have seen for about 9 months He was a neurologist for over 20 years before changing specialties. This is a doctor that I have grown very fond of and who I think very highly of.
When he came in I told him that I was concerned about my weakness and how quickly it has progressed. He began talking to me about the plaques on my MRI, my Spinal Tap results and clinical exam. I was dumbfounded!
He said "Lois, you have MS, we already know this what we do next is decide which type you have."
He continued to talk about MS and treatment. He said "the Univ. of MI Ann Arbor is researching drug trials for Primary Progressive MS. He said "there are "some treatments for PPMS but I hope you will be open to a part of he research happening there". He said "if they only give you steroids call me".
He said "they will order a good wheelchair for you." He said he would always be available for rehab purposes but the University would be the one to order it from time to time.
I tried to talk him out of it by telling him that I only had hyperintensities in my MRI etc. He said he had treated MS for over 20 years and knows it inside and out. He said they are plaques.
I didn't ask any questions because my mouth was on the floor
Tears welled up in my eyes and I started to cry a bit. Then I shut it down and I felt like all of it was not real. You know like you are not really there. I drove around for hours, stopping and sitting in the car for long stretches of time.
I don't know what to think. I don't know what to feel. I don't know if it's real. I just don't know. I feel numb.
Is this normal? Did you feel this?
Red
When he came in I told him that I was concerned about my weakness and how quickly it has progressed. He began talking to me about the plaques on my MRI, my Spinal Tap results and clinical exam. I was dumbfounded!
He said "Lois, you have MS, we already know this what we do next is decide which type you have."
He continued to talk about MS and treatment. He said "the Univ. of MI Ann Arbor is researching drug trials for Primary Progressive MS. He said "there are "some treatments for PPMS but I hope you will be open to a part of he research happening there". He said "if they only give you steroids call me".
He said "they will order a good wheelchair for you." He said he would always be available for rehab purposes but the University would be the one to order it from time to time.
I tried to talk him out of it by telling him that I only had hyperintensities in my MRI etc. He said he had treated MS for over 20 years and knows it inside and out. He said they are plaques.
I didn't ask any questions because my mouth was on the floor
Tears welled up in my eyes and I started to cry a bit. Then I shut it down and I felt like all of it was not real. You know like you are not really there. I drove around for hours, stopping and sitting in the car for long stretches of time.
I don't know what to think. I don't know what to feel. I don't know if it's real. I just don't know. I feel numb.
Is this normal? Did you feel this?
Red
Guiar_grrl, congratulations on your new grandbaby.
Sumanadevii, I absolutely love it!! That's a great slogan---should stop everyone in their tracks.
Red
Sumanadevii, I absolutely love it!! That's a great slogan---should stop everyone in their tracks.
Red
I just made a cute sign for my wheelchair with the help of a crafter friend. It says
It's MS Girlfriend
and I'm Enjoying the RIde
I won't go gracefully!!!!! lol
It's MS Girlfriend
and I'm Enjoying the RIde
I won't go gracefully!!!!! lol
Oh, Red, I'm so sorry you got this MiSerable diagnosis. As I do for everybody on this forum, I'm sending big cyber hugs to you. Hang in there, sweetie, and don't let the buggers who call you lazy, or crazy or anything else get you down.
Sorry for the late response - I just became a new grandma!
Big Hugs,
Guitar_grrrl
Sorry for the late response - I just became a new grandma!
Big Hugs,
Guitar_grrrl
Kristi, thanks for telling your story. We all have such different stories. I can't say the words out loud. I can't say: I have ______. It is just too much. I think we should have an emblem on our wheelchairs "I'm not lazy I have MS" :-0
Ken, You're so funny, we just never know what docs are going to do next. I would love to be a fly on the wall of their office.
Debtea, Diagnosing and un-diagnosing----it just get's so crazy. If we're not crazy going in we soon will be :-)
Ren, that's the best I've heard--grocery store
Addi, thanks for the big hug!!
Alex; I would really like to hear your story and see what your PPMS has been like. I am hoping that there is a drug trial somewhere. I just want the progression to stop!!
I just want to thank everyone for being so supportive and taking the time to respond. It really does make a huge difference in my life.
:-) ((((Hugs to all))))
Ken, You're so funny, we just never know what docs are going to do next. I would love to be a fly on the wall of their office.
Debtea, Diagnosing and un-diagnosing----it just get's so crazy. If we're not crazy going in we soon will be :-)
Ren, that's the best I've heard--grocery store
Addi, thanks for the big hug!!
Alex; I would really like to hear your story and see what your PPMS has been like. I am hoping that there is a drug trial somewhere. I just want the progression to stop!!
I just want to thank everyone for being so supportive and taking the time to respond. It really does make a huge difference in my life.
:-) ((((Hugs to all))))
I have been offered no treatment for my PPMS but I have learned that is okay as well. Mostly I just get monitored. I was told streriods, DMDs, and tysabri will not help. I am to healthy for drug trials they want dramatic results for PPMS. My PCP monitors my pain.
I also can't get disability. I just accept it and do what I can. I pet sit and paint for money. I will have to start a new career one day.
Alex
I also can't get disability. I just accept it and do what I can. I pet sit and paint for money. I will have to start a new career one day.
Alex
Wow, Lois! While I know, in time, you will be relieved about this...at this time I am sure the shock of it all is quite not what you expected. I can understand that.
I am glad you got your diagnosis. You needed it. Thank God you pushed and pushed for answers!
Now you can proceed with getting DMD's....and that wheelchair.
Hugs to you (stretched out from the other side of the mountain!). I know you will get through the shock and be in a good place....you are a strong person.
Addi
Sorry I'm so late to the dx unveiling. I am sorry you have been dx'd but like everyone said at least you know the enemy.
As for getting an unexpected dx, I was officially told in the grocery store (cell phone call from neuro) that I have MS. I was expecting it and even with a medical background, it was difficult to hear and so difficult to finish my shopping without losing my composure.
I hope the PPMS does not get dx'd but as mentioned above , Alex is a shining example of a dx label doesn't mean a wheelchair.
The emotional rollercoaster is not a fun ride but it is part of the acceptance phase.
You know we are always here anytime you need to rant, need support or just need some cyber-hugs.
Hugs,
Ren
As for getting an unexpected dx, I was officially told in the grocery store (cell phone call from neuro) that I have MS. I was expecting it and even with a medical background, it was difficult to hear and so difficult to finish my shopping without losing my composure.
I hope the PPMS does not get dx'd but as mentioned above , Alex is a shining example of a dx label doesn't mean a wheelchair.
The emotional rollercoaster is not a fun ride but it is part of the acceptance phase.
You know we are always here anytime you need to rant, need support or just need some cyber-hugs.
Hugs,
Ren
I am so sorry for the shock of your diagnosis. It seems like we KNOW, but kinda think we will be proven wrong and it will end up something silly happening.
I also found out I was diagnosed the other day through a fax that was sent for my employer. The dr. never even told me! I called to make sure they had it right, half hoping it was a mistake, half hoping i will finally get some real help and justification in the way I have been feeling for so long. Anyhow, they told me that my tests and history confirmed the diagnosis and with my latest bought of ON - confirmed by the opthamologist - it is definately MS.
I keep thinking that at my next appointment on August 19th - they are gonna change their mind. I have pretty much thought it was MS for a long time, but now I am having trouble believing it! Maybe I am nuts! LOL
Anyhow, I guess this rollercoaster ride is still crazy - diagnosed or not. I am sorry that you and I and so many others are dealing with this news. Thank God for this forum. I find myself turning to it soooo much right now! I have always read but rarely posted - like I didn't have the right.
My prayer are with you and please keep me and everyone up to date on what happens next...I am sorta wondering myself.
Debtea
I also found out I was diagnosed the other day through a fax that was sent for my employer. The dr. never even told me! I called to make sure they had it right, half hoping it was a mistake, half hoping i will finally get some real help and justification in the way I have been feeling for so long. Anyhow, they told me that my tests and history confirmed the diagnosis and with my latest bought of ON - confirmed by the opthamologist - it is definately MS.
I keep thinking that at my next appointment on August 19th - they are gonna change their mind. I have pretty much thought it was MS for a long time, but now I am having trouble believing it! Maybe I am nuts! LOL
Anyhow, I guess this rollercoaster ride is still crazy - diagnosed or not. I am sorry that you and I and so many others are dealing with this news. Thank God for this forum. I find myself turning to it soooo much right now! I have always read but rarely posted - like I didn't have the right.
My prayer are with you and please keep me and everyone up to date on what happens next...I am sorta wondering myself.
Debtea
Hi Red, I'm sorry that you've been diagnosed, but am relieved for you even if the relief hasn't sunk in with you yet. As so many have said, at least you have a name to the MonSter now and can be armed with information and a treatment plan that suits your prognosis.
This reminded me of when I was initially diagnosed - my neurologist called me into his office from the waiting room, told me to sit down and then proceeded to tell me that I had M.S. exactly like this.
Him: Well, Mr. *******, you're one of my smartest patients.
Me: Why's that
Him: You have M.S.
See, he didn't think I had M.S. when I first saw him, but I did. His bedside manner was horrible, but my diagnosis came very quickly, so I guess I should be greatful for that.
I was almost as shocked to hear it come from him that way as I was when a subsequent Neurologist told me that I had M.S. but it couldn't be classified as RRMS and he took me off of DMDs. That's when I felt punched in the gut.
Again a few days ago I felt punched in the gut when my new neurologist tried to get me to say that I was progressive and not RRMS. It's like, "Oh my God, do I have to go through diagnosis again???"
Oh well, you know what they say - Third times the charm!
This reminded me of when I was initially diagnosed - my neurologist called me into his office from the waiting room, told me to sit down and then proceeded to tell me that I had M.S. exactly like this.
Him: Well, Mr. *******, you're one of my smartest patients.
Me: Why's that
Him: You have M.S.
See, he didn't think I had M.S. when I first saw him, but I did. His bedside manner was horrible, but my diagnosis came very quickly, so I guess I should be greatful for that.
I was almost as shocked to hear it come from him that way as I was when a subsequent Neurologist told me that I had M.S. but it couldn't be classified as RRMS and he took me off of DMDs. That's when I felt punched in the gut.
Again a few days ago I felt punched in the gut when my new neurologist tried to get me to say that I was progressive and not RRMS. It's like, "Oh my God, do I have to go through diagnosis again???"
Oh well, you know what they say - Third times the charm!
I am sorry to hear that you were given the dx of MS. I remember when I finally got my dx last summer. My dad has this, I knew I had it too. I was treated for so long like I was crazy by my neuro so when I saw a specialist and he dx me, I was actually excited.
Looking back, I probably appeared crazy after all. I mean, who reacts that way to hearing that news?? It took a few weeks for the reallization to set in along with the depression. I too, felt embarassed to say I had MS. I would actually tell people that I had a head injury in a car accident rather than say I had a disease.
I can't stand the sympathy from people. I need a wheelchair at certain airports because I can't walk the distance or make my connecting flight in time. The wheelchair person is always totally surprised when I sit down. I still get funny looks because I don't "look sick".
Give yourself plenty of time to digest this information. I still go back and forth with anger, sadness, grief, disbelief and a feeling that I will be ok. Bipolar emotions? We are all here to vent to, lend an understanding ear and just reach out to.
Take Care and I wish you peace and strength with this dx...
Kristi
Looking back, I probably appeared crazy after all. I mean, who reacts that way to hearing that news?? It took a few weeks for the reallization to set in along with the depression. I too, felt embarassed to say I had MS. I would actually tell people that I had a head injury in a car accident rather than say I had a disease.
I can't stand the sympathy from people. I need a wheelchair at certain airports because I can't walk the distance or make my connecting flight in time. The wheelchair person is always totally surprised when I sit down. I still get funny looks because I don't "look sick".
Give yourself plenty of time to digest this information. I still go back and forth with anger, sadness, grief, disbelief and a feeling that I will be ok. Bipolar emotions? We are all here to vent to, lend an understanding ear and just reach out to.
Take Care and I wish you peace and strength with this dx...
Kristi
To all of you I just want to say thank you and send everyone hugs!! This is the best support group--so helpful and faithful.
I appreciate each of you and your words of encouragment and your stories of how you first heard it.
Everyone of you helped me----Thank you!!!
((((Hugs)))) Red!!
I appreciate each of you and your words of encouragment and your stories of how you first heard it.
Everyone of you helped me----Thank you!!!
((((Hugs)))) Red!!
Hey Red,
I'm sorry to chime in so late! Though his words caught you off guard because of what you have been dealing with thus far -- this guy, all I can say is he is terrific, no? And confident to boot! He knows MS. yay! Red, I'm so happy to hear you are in good hands.
Grateful to be a part of your life while you are going through this 1st phase.
Onward for you! What day do you go next week?
-Shell
I'm sorry to chime in so late! Though his words caught you off guard because of what you have been dealing with thus far -- this guy, all I can say is he is terrific, no? And confident to boot! He knows MS. yay! Red, I'm so happy to hear you are in good hands.
Grateful to be a part of your life while you are going through this 1st phase.
Onward for you! What day do you go next week?
-Shell
Hello this morning. I really don't know if I should be happy that your journey for an answer is over or be sad that it ended with this diagnosis for you. But either way you are blessed Lois. Blessed to have a group of friends that care so much for you that they would rally around you likethey have today.
I know how hard it must have been to hear it. I am scared out of my mind. But now on to treatment. You are in my prayers Your posts have meant so much to me.
Stay with us and keep up the faith. You are strong.... You are Invinsible.... Hey that could be a song............wait I think someone already did it.. always a day late and a dollar short. Love ya
Missy
I know how hard it must have been to hear it. I am scared out of my mind. But now on to treatment. You are in my prayers Your posts have meant so much to me.
Stay with us and keep up the faith. You are strong.... You are Invinsible.... Hey that could be a song............wait I think someone already did it.. always a day late and a dollar short. Love ya
Missy
Lois,
I know how hard that must have been to hear. Going from what you suspect to what it *IS* is a tough emotional leap.
I hope you are feeling a bit better today. ((hugs)) my friend. I wish I had more to offer for comfort :-(
~Jess
I know how hard that must have been to hear. Going from what you suspect to what it *IS* is a tough emotional leap.
I hope you are feeling a bit better today. ((hugs)) my friend. I wish I had more to offer for comfort :-(
~Jess
I am so sorry that ended up being your diagnosis.
I guess the only good thing is that now you can spend your energy on feeling better instead of fighting with dr's to take you seriously. :(
((take care))
I guess the only good thing is that now you can spend your energy on feeling better instead of fighting with dr's to take you seriously. :(
((take care))
Hi Lois
I have also been watching your journey, and it feels to me that you have been with us for some time. It hink that nothing prepares us for the shock of hearing those words when we get our dx. It feels a bit like a bereavement....when in your heart you know someone is dying...but when it actually happens it is difficult to take in and believe.
We have had other discussions on the forum about comparing the feeling to grief from a death and there are similarities...however there is one major difference and that is that you are still alive, full of the wonderful person inside you that makes you special. This wretched illness invades every aspect of our lives, is an invisible visitor in our bodies and has control of our future. But I do not think I have ever come across such wonderful people, who have the gift of compassion, understanding, empathy and love as are on this site.
We all share in your loss and dx, but celebrate that you are one of us and leep hold of that red flame inside you and remember you have inner strength that will help you through the tough times ahead.
With love, big hugs and my thoughts
Sarah xxxxxx
I have also been watching your journey, and it feels to me that you have been with us for some time. It hink that nothing prepares us for the shock of hearing those words when we get our dx. It feels a bit like a bereavement....when in your heart you know someone is dying...but when it actually happens it is difficult to take in and believe.
We have had other discussions on the forum about comparing the feeling to grief from a death and there are similarities...however there is one major difference and that is that you are still alive, full of the wonderful person inside you that makes you special. This wretched illness invades every aspect of our lives, is an invisible visitor in our bodies and has control of our future. But I do not think I have ever come across such wonderful people, who have the gift of compassion, understanding, empathy and love as are on this site.
We all share in your loss and dx, but celebrate that you are one of us and leep hold of that red flame inside you and remember you have inner strength that will help you through the tough times ahead.
With love, big hugs and my thoughts
Sarah xxxxxx
We haven't met officially but I had to respond to your news, I sought a dx for my sx for many years and it still came as a shock and when he said the words I still sat there like you - chin on the floor.
As I live in the UK appts with a neuro are hard to come by on the NHS as we have a shortage of neuros here anyway. So weeks later after gathering my thoughts and consulting with the wonderful 'family' on here I made a private appointment and took a list of questions along with me, when I was better able to handle it.
Oft times it is very easy for us to 'intellectualise' what is happening to us and it is only when we have to ‘internalise’ it that it hits home. I have spent a long time trying to internalise my dx but find it much easier to handle when I intellectualise it.
After 20 years of sx I am now 14 months since dx and in spite of telling those around me it still feels unreal. We have had many chats on the forum about acceptance and our wonderful Pastor Dan turned the discussions into a Health Page – take a look at that when you feel able to, it really helped me.
The ‘family’ here are always so supportive and although I haven’t been around for a while like all families when I return it’s like I had never been away, so lean on your new friends here to.
Thinking of you and feeling your pain.
(((hugs)))
Pat
As I live in the UK appts with a neuro are hard to come by on the NHS as we have a shortage of neuros here anyway. So weeks later after gathering my thoughts and consulting with the wonderful 'family' on here I made a private appointment and took a list of questions along with me, when I was better able to handle it.
Oft times it is very easy for us to 'intellectualise' what is happening to us and it is only when we have to ‘internalise’ it that it hits home. I have spent a long time trying to internalise my dx but find it much easier to handle when I intellectualise it.
After 20 years of sx I am now 14 months since dx and in spite of telling those around me it still feels unreal. We have had many chats on the forum about acceptance and our wonderful Pastor Dan turned the discussions into a Health Page – take a look at that when you feel able to, it really helped me.
The ‘family’ here are always so supportive and although I haven’t been around for a while like all families when I return it’s like I had never been away, so lean on your new friends here to.
Thinking of you and feeling your pain.
(((hugs)))
Pat
A bigHUG to you Lois.
Like other have said this probabley hit you really hard because you were not expecting any form of Dx at that appointment. So mentally you were unprepared.
But from what you have said you accepted it, and can now move forward. They can help with your problems knowing exactly what they are treating.
You need now to give yourself a treat a bit of pampering, and remember you are the same person as you where yesterday.
thinking of you.
Twist
Like other have said this probabley hit you really hard because you were not expecting any form of Dx at that appointment. So mentally you were unprepared.
But from what you have said you accepted it, and can now move forward. They can help with your problems knowing exactly what they are treating.
You need now to give yourself a treat a bit of pampering, and remember you are the same person as you where yesterday.
thinking of you.
Twist
Sorry to hear about your dx.
I too can remember sitting the Neuros office, thinking this can't be happening to me.
Your a strong Lady, however you will need time to adjust to your dx, but it will never change the person that you are OK?
We are all here for you when you want to vent.
Hugs,
Debs xxxxx
I too can remember sitting the Neuros office, thinking this can't be happening to me.
Your a strong Lady, however you will need time to adjust to your dx, but it will never change the person that you are OK?
We are all here for you when you want to vent.
Hugs,
Debs xxxxx
COMMUNITY LEADER
Hey Red,
Wow what a day you've had, i think what your feeling is totally understandable! I do think the wind is only temporarily out of your sails, your a strong woman and i'm sure once you get over the shock, you'll feel more like your self.
I am so sorry about your dx, though i am still pleased your limbo journey is now over, I hope you take care, eat a tonne of your favorite sweat foods and be kind to your self whilst you process the unexpected news.
[[[[[[[[HUGS]]]]]]]
JJ
Wow what a day you've had, i think what your feeling is totally understandable! I do think the wind is only temporarily out of your sails, your a strong woman and i'm sure once you get over the shock, you'll feel more like your self.
I am so sorry about your dx, though i am still pleased your limbo journey is now over, I hope you take care, eat a tonne of your favorite sweat foods and be kind to your self whilst you process the unexpected news.
[[[[[[[[HUGS]]]]]]]
JJ
Oh My Dear Friend! My heart goes out to you and I am sending you a HUGE Hug
right now :)
Even though you kinda knew what was going on...like i have said many, many times.....When you finally "Hear those Words"...AND, they belong to YOU......it leaves you standing there like.....Well, like it just feels "So Real"
We are alike that we knew what was wrong, we wanted to be validated, we wanted our dx so we could go on w/ life, BUT, When we get it...I wanted to act like it was a "HOT POTATO" and throw it back!...Lol
Those Letters PPMS sound very freightening I am sure. Now before they Give your Formal MS Dx as PP rather than RR....what are they going to base their decision on??
When is your next appt to discuss your PP or RR and Meds / DMD's?
I truly hope that it will be very soon as lingering makes things hard
I imagine you feel a bit numb mentally right about now! Very Normal though to feel like that. Speaking of ages...Pink Floyd's "Comfortably Numb" describes how I would like to be sometimes.....For me.....Comfortably Numb just means, My mind is empty and Sooo relaxed through meditation and incence... :) A mental vacation...Lol
Oh my gosh, sorry for rambling! you can expext this emotional roller coaster...and just about the time you think the ride is over and the Theme Park is closing.....you have jumped back on that Roller Coaster once again......And That's OK!
No Worries.....Everything is going to be alright :)
<<>>
~Tonya
You crack me up 'cause you're kinda kookie.
Hell, I don't remember what I had for supper, never mind 77 Sunset Strip. :-)
Red, see? You're feeling a tiny bit better already.....at-a-girl!
Mike
Hell, I don't remember what I had for supper, never mind 77 Sunset Strip. :-)
Red, see? You're feeling a tiny bit better already.....at-a-girl!
Mike
Im sorry Red...I wish no one had this disease. But you are a strong, amazing person. I know you are awesome and it sounds like you have a great medical team! Please take care of yourself emotionally and physically. You are in my thoughts and prayers.
Inny
Inny
Quix,! I think you are right about the root of the pain being tied to friends, family and doctors belittling us before diagnosis. I am so glad it was brought up.
We must be close in age, I remember 77 Sunset Strip! I was very young, but I remember the song as I listened to it while I was supposed to be sleeping.
Julie, Lulu, Michelle and Terri, It's good to know we are all in this together----Red
We must be close in age, I remember 77 Sunset Strip! I was very young, but I remember the song as I listened to it while I was supposed to be sleeping.
Julie, Lulu, Michelle and Terri, It's good to know we are all in this together----Red
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Hearing "PPMS" over and over would really stop anyone in their tracks. Your shock is understandable. You will go through a lot of things before this takes it's place in the fabric of how you see yourself and your life.
However, remember that hearing this and getting a name for what you are going through DOES NOT really change anything. It doesn't make you sick - you already have been sick. You are just the same as you were a day or so ago, but with more information. Now you have a name to the enemy and a way to explain to others and can form some sort of plan.
I found that the real jolt was the transition from no info and no plan to it's polar opposite. Along with this comes the anger - real deep-seated fury - toward those who belittled what you were going through or who ignored it. I think that anger can be healthy as anger is what lets sadness move forward.
Welcome to the other side of the mountain. I hope that this wonderful doc can help you through. Stay with us and ask all you need to. This is where your friends can really help.
Quix
Quix