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
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
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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