Aa
It's official - I have MS.
I received a phone call from my Neuro-Ophth yesterday asking for me to call her regarding my email update, so I called her this morning.
She asked a few questions then we discussed the significant improvement with IVSM and what that means. She thought it was possible my complaints were refractive in nature but it appears they are not. *My theory holds up.* :)
She told me it is MS. I am to follow-up with an appointment to go over the new MRI and long term treatment options. She is going to discuss with my Neuro.
We had a nice talk about how much improved my symptoms are. I feel so much better, she said ot is also nice to know what you are facing and you can move forward in what you need.
I am a bit manic (high energy and happy) at the moment from the steroids and feeling so much better so this likely is hitting me different. I feel relief. I'm ready to move forward. Is that odd?
She asked a few questions then we discussed the significant improvement with IVSM and what that means. She thought it was possible my complaints were refractive in nature but it appears they are not. *My theory holds up.* :)
She told me it is MS. I am to follow-up with an appointment to go over the new MRI and long term treatment options. She is going to discuss with my Neuro.
We had a nice talk about how much improved my symptoms are. I feel so much better, she said ot is also nice to know what you are facing and you can move forward in what you need.
I am a bit manic (high energy and happy) at the moment from the steroids and feeling so much better so this likely is hitting me different. I feel relief. I'm ready to move forward. Is that odd?
If your mind is at peace with the diagnosis then that is all that matters.
It is unfortunate that you are not happy with the Neurologist. Perhaps if you have a talk with her in regard to how you feel and clear the air, she and you can have a great rapport.
Sincerely,
Lisa
It is unfortunate that you are not happy with the Neurologist. Perhaps if you have a talk with her in regard to how you feel and clear the air, she and you can have a great rapport.
Sincerely,
Lisa
PS - Thank you again, I'm processing some of this but I really think it just brings clarity (in more ways than one.)
Hi my friends, thank you all for your warm thoughts and support.
Mary and Lisa, I am listening and, yes, we are on the same page. Usually I am much more 'wordy' than I was in this post so I'll go into more details. :) I don't think the IVSM symptom resolution was used as the standard for diagnosis. It was the ON/acute excerabation and the symptom resolution was another clue, especially for my vision issues.
Lady MSologist has referred to all this as "an acute excerbation" and "another acute flare" and her nurses have referred to it as MS but I've not heard from her directly. I don't feel like Lady MSologist is communicating with me like I'd like. She was just ambiguous enough that it caused me more concern than anything. She never once checked on me with the IVSM. I had no idea what to expect. I just know what her nurses have told me and I can't get in to see her until April. I'm not sure she's the right fit for me. My Mom is in the medical industry and she is MADDDDD (which says a lot!) lol ~
It was my Neuro-Ophth diagnosed me. She had asked if my Neuro had talked to me about long term treatment options and I had indicated she had primarily done the treatment of the IVSM over the phone (through her nurse) with the report from the Ophthmalogist. She said that was good but now that I've had another acute flare with Optic Neuritis, along with her examination and tests she feels I indeed have MS and we need to move forward. She wanted to see my new MRI in person and go over long term treatment options. She was going to consult with the Neurologist herself.
I got the impression this is more a team working on my diagnosis and treatment. We spent nearly 15 minutes on the phone. I knew she was fairly confident it was MS in October based on my (OCT) tests but she couldn't quite determine which part of my vision issues were refractive and which part was MS because they were monocular and binocular. Usually monocular is refractive but it is not in my case (I had LASIK) and she thought it was possible I had LASIK regression. She indicated the IVSM gives us a baseline of what is refractive and what is not which was the confusing part of my situation. This proves my vision issues are not refractive (that was my theory) and she felt confident in saying it's MS. She even told me that I'm sure it brings me relief to know what this is and move forward.
With all that, I think my mind is at peace with MS. It fits. I don't think I really doubt that diagnosis (any more/less than normal.) There really isn't anything else that fits and I think that is where my Lady MSologist was at two months ago. I suspected she wanted see something more specific and she got it with ON. I have no history of high blood pressure (in fact it is very low) all my lab tests are completely negative (3x's over) but I did schedule a 2nd opinion a few weeks ago with another MSologist/Neurologist.
I am going to see her for the reasons you state - just having another person take a look at me. I also have some underlying concern that there may be a 2nd issue going on because of some other subtle symptoms I have had. I know it is possible it is MS related but I am concerned enough that I would like to discuss it. I also am going to see her for many many reasons. I am hoping for a little better quality in care.
I've spent this last year and half (and four flares) floundering without treatment. Truth be told, I would see my Neuro-Ophth for everything if I could but I am hopeful that I will learn in my follow-up with her that she can now use this baseline to treat my vision symptoms and I won't have to live another year and half struggling so much to see.
As for my mood, I do agree the steroids are creating quite the mood lifter for me but I sort of compare it to labor. I have been in labor for a year and half straight, I dilated to an 8 and someone gave me an epidual that WORKED. I'm deliriously relaxed and feel like my old self (even with some residual issues from the ON).
I am still experiencing some issues with my eye. muscle weakness and myoclonus but the cloud that was over my body/mind the last year and half has been lifted. I am energetic again. I really hope I don't crash but I am anticipating mood swings. I'm not moody at all just at peace (which has brought thoughts of wondering if I needed some anti-depressants this last year or more.) I really hope I'll slowly stabilize over the next several months as some of the others that had positive experiences with IVSM. I can hope right?
Mary and Lisa, I am listening and, yes, we are on the same page. Usually I am much more 'wordy' than I was in this post so I'll go into more details. :) I don't think the IVSM symptom resolution was used as the standard for diagnosis. It was the ON/acute excerabation and the symptom resolution was another clue, especially for my vision issues.
Lady MSologist has referred to all this as "an acute excerbation" and "another acute flare" and her nurses have referred to it as MS but I've not heard from her directly. I don't feel like Lady MSologist is communicating with me like I'd like. She was just ambiguous enough that it caused me more concern than anything. She never once checked on me with the IVSM. I had no idea what to expect. I just know what her nurses have told me and I can't get in to see her until April. I'm not sure she's the right fit for me. My Mom is in the medical industry and she is MADDDDD (which says a lot!) lol ~
It was my Neuro-Ophth diagnosed me. She had asked if my Neuro had talked to me about long term treatment options and I had indicated she had primarily done the treatment of the IVSM over the phone (through her nurse) with the report from the Ophthmalogist. She said that was good but now that I've had another acute flare with Optic Neuritis, along with her examination and tests she feels I indeed have MS and we need to move forward. She wanted to see my new MRI in person and go over long term treatment options. She was going to consult with the Neurologist herself.
I got the impression this is more a team working on my diagnosis and treatment. We spent nearly 15 minutes on the phone. I knew she was fairly confident it was MS in October based on my (OCT) tests but she couldn't quite determine which part of my vision issues were refractive and which part was MS because they were monocular and binocular. Usually monocular is refractive but it is not in my case (I had LASIK) and she thought it was possible I had LASIK regression. She indicated the IVSM gives us a baseline of what is refractive and what is not which was the confusing part of my situation. This proves my vision issues are not refractive (that was my theory) and she felt confident in saying it's MS. She even told me that I'm sure it brings me relief to know what this is and move forward.
With all that, I think my mind is at peace with MS. It fits. I don't think I really doubt that diagnosis (any more/less than normal.) There really isn't anything else that fits and I think that is where my Lady MSologist was at two months ago. I suspected she wanted see something more specific and she got it with ON. I have no history of high blood pressure (in fact it is very low) all my lab tests are completely negative (3x's over) but I did schedule a 2nd opinion a few weeks ago with another MSologist/Neurologist.
I am going to see her for the reasons you state - just having another person take a look at me. I also have some underlying concern that there may be a 2nd issue going on because of some other subtle symptoms I have had. I know it is possible it is MS related but I am concerned enough that I would like to discuss it. I also am going to see her for many many reasons. I am hoping for a little better quality in care.
I've spent this last year and half (and four flares) floundering without treatment. Truth be told, I would see my Neuro-Ophth for everything if I could but I am hopeful that I will learn in my follow-up with her that she can now use this baseline to treat my vision symptoms and I won't have to live another year and half struggling so much to see.
As for my mood, I do agree the steroids are creating quite the mood lifter for me but I sort of compare it to labor. I have been in labor for a year and half straight, I dilated to an 8 and someone gave me an epidual that WORKED. I'm deliriously relaxed and feel like my old self (even with some residual issues from the ON).
I am still experiencing some issues with my eye. muscle weakness and myoclonus but the cloud that was over my body/mind the last year and half has been lifted. I am energetic again. I really hope I don't crash but I am anticipating mood swings. I'm not moody at all just at peace (which has brought thoughts of wondering if I needed some anti-depressants this last year or more.) I really hope I'll slowly stabilize over the next several months as some of the others that had positive experiences with IVSM. I can hope right?
My own thoughts echo Lisa's words when she wrote, "Part of me wants to say, "YES! FINALLY!" to you and another part of me wants to know if your Chief Neurologist has stated such as well to make sure."
With so much uncertainty from so many doctors in the recent past, I too would be baffled by this quick turn about based on one series of IVSM. Several conditions can benefit from steroid administration (and some of us have found that IVSM DOESN'T always help). I haven't heard of symptom resolution with steroid treatment as a standard for MS diagnosis.
IVSM is known to shift body fluid balances as a side effect. Is it at all possible that could be a factor here? I know it’s an outside-the-box idea..... I'm not sure it is much further out than near perfect vision after an extended period of worsening refractions.
I too wonder what the neuro has to say. We have had a person or two here diagnosed by a neuro-ophthalmologist but it isn't the norm. Is this doc willing to prescribe a DMD and take on management of your MS? Is she experienced in doing that? They are important questions because (as experience has shown some of us) a diagnosis is not always transferable. These are a few of the initial reasons I took an unpopular stand a while back and advised against charging ahead too fast. Still, I hope this continues to work out well for you.
Is your reaction odd? Probably not given you have been on a mission that peeked after several days taking high-dose steroids. You just seem a little happier than what we are used to. Many searchers are relieved initially. It’s often followed quickly by sadness and/or anger as they realize the implications of the disease and glimpse the ups and downs of the first year with MS. I can only hope your level of joy doesn’t set you up for a devastating letdown as well.
I'm glad your vision is so much improved and hope your other symptoms have also fled in the wake of the IVSM treatment. I suppose for any of us diagnosis always stands or falls on the evidence of the future. Either way, it's good to be able to move forward.
Mary
With so much uncertainty from so many doctors in the recent past, I too would be baffled by this quick turn about based on one series of IVSM. Several conditions can benefit from steroid administration (and some of us have found that IVSM DOESN'T always help). I haven't heard of symptom resolution with steroid treatment as a standard for MS diagnosis.
IVSM is known to shift body fluid balances as a side effect. Is it at all possible that could be a factor here? I know it’s an outside-the-box idea..... I'm not sure it is much further out than near perfect vision after an extended period of worsening refractions.
I too wonder what the neuro has to say. We have had a person or two here diagnosed by a neuro-ophthalmologist but it isn't the norm. Is this doc willing to prescribe a DMD and take on management of your MS? Is she experienced in doing that? They are important questions because (as experience has shown some of us) a diagnosis is not always transferable. These are a few of the initial reasons I took an unpopular stand a while back and advised against charging ahead too fast. Still, I hope this continues to work out well for you.
Is your reaction odd? Probably not given you have been on a mission that peeked after several days taking high-dose steroids. You just seem a little happier than what we are used to. Many searchers are relieved initially. It’s often followed quickly by sadness and/or anger as they realize the implications of the disease and glimpse the ups and downs of the first year with MS. I can only hope your level of joy doesn’t set you up for a devastating letdown as well.
I'm glad your vision is so much improved and hope your other symptoms have also fled in the wake of the IVSM treatment. I suppose for any of us diagnosis always stands or falls on the evidence of the future. Either way, it's good to be able to move forward.
Mary
I'm going to go out on a limb here and ask you if your MS Specialist or your Neurologist (The Chief Neurologist) had given you the same diagnosis as well?
The reason why I ask this is because of the magnitude of this diagnosis and me wanting YOU to receive the correct one. I would even go as far as to say if your MS Specialist agreed with the Neuro-Opthalmologist, I would encourage you to receive a second opinion just to make 98% more sure that this is it. Does this make sense to you? I known that I am projecting on how I would be into your situation.
I realize the need to receive answers for all that you have been through is and has been all too consuming. I personally know (as many here too have been through this experience), the adamant conviction to get the answers for the reasons why you've been through what you been through. I want you to know that I truly care that you are receiving the correct one.
It is not my intention to be mean or deliberately put up another road block to your final answers that you received. It is my intention to ensure that you are comfortable with this diagnosis (not because you "feel" that MS has to be it), but to know that there is nothing else left but MS. Do you understand what I'm trying to say?
I'm very sorry that you received this diagnosis and it is not a diagnosis that I would wish upon anyone, let alone myself. However, the steps you' have taken are admirable and the long uphill battle to seek the answers to your physical issues has appeared to come to an end.
Part of me wants to say, "YES! FINALLY!" to you and another part of me wants to know if your Chief Neurologist has stated such as well to make sure.
I know for myself, as I am a medical professional, can't state for a fact that MS is what I have. I do not "know" in my heart that this is what it is, nor does the two years of physical neurological issues points toward it. If I got a diagnosis tomorrow, I would go and get a second opinion. I believe that I would have a very hard time believing it would be so (not sure if it would be denial or scared to have such a disease).
Right now, I'm doing well for the past 3.5 weeks. No pain, no gait issues, no >24 hours of paresthesias, no spasticity and no vertigo makes me think I'm good to go and there's nothing wrong with me. It makes me explain away in my own mind that the EBV (mono) has caused this post viral idiopathic neurological mess that I have been experiencing for the past two years. Where I couldnt walk last summer in August (severe ataxia) and put away my high heels in a box is now no longer a concern. This confuses me to know end.
Regardless of my personal situation, if you are satisfied with your diagnosis then you have my utmost support. Again, I am so sorry that you received this diagnosis.
With much respect and heartfelt empathy,
Lisa
The reason why I ask this is because of the magnitude of this diagnosis and me wanting YOU to receive the correct one. I would even go as far as to say if your MS Specialist agreed with the Neuro-Opthalmologist, I would encourage you to receive a second opinion just to make 98% more sure that this is it. Does this make sense to you? I known that I am projecting on how I would be into your situation.
I realize the need to receive answers for all that you have been through is and has been all too consuming. I personally know (as many here too have been through this experience), the adamant conviction to get the answers for the reasons why you've been through what you been through. I want you to know that I truly care that you are receiving the correct one.
It is not my intention to be mean or deliberately put up another road block to your final answers that you received. It is my intention to ensure that you are comfortable with this diagnosis (not because you "feel" that MS has to be it), but to know that there is nothing else left but MS. Do you understand what I'm trying to say?
I'm very sorry that you received this diagnosis and it is not a diagnosis that I would wish upon anyone, let alone myself. However, the steps you' have taken are admirable and the long uphill battle to seek the answers to your physical issues has appeared to come to an end.
Part of me wants to say, "YES! FINALLY!" to you and another part of me wants to know if your Chief Neurologist has stated such as well to make sure.
I know for myself, as I am a medical professional, can't state for a fact that MS is what I have. I do not "know" in my heart that this is what it is, nor does the two years of physical neurological issues points toward it. If I got a diagnosis tomorrow, I would go and get a second opinion. I believe that I would have a very hard time believing it would be so (not sure if it would be denial or scared to have such a disease).
Right now, I'm doing well for the past 3.5 weeks. No pain, no gait issues, no >24 hours of paresthesias, no spasticity and no vertigo makes me think I'm good to go and there's nothing wrong with me. It makes me explain away in my own mind that the EBV (mono) has caused this post viral idiopathic neurological mess that I have been experiencing for the past two years. Where I couldnt walk last summer in August (severe ataxia) and put away my high heels in a box is now no longer a concern. This confuses me to know end.
Regardless of my personal situation, if you are satisfied with your diagnosis then you have my utmost support. Again, I am so sorry that you received this diagnosis.
With much respect and heartfelt empathy,
Lisa
Sidesteps(Barb)
Praise God for a dx finally, but not for MS. I can only imagine what you're going thru so just holdfast and tight. I know the Lord will give you the strength and the NeuroDrs the wisdom to get you on all the right meds and the course into this next chapter of your journey.
I will continue to pray for you and please keep us posted in Limboland as we are all still family.
Love,Hugs and prayers with best wishes on this journey that you can now fight stronger.
Again, I'm so happy you FINALLY know!
In Limbo and waiting but yet still blessed!
Tammy:)
Praise God for a dx finally, but not for MS. I can only imagine what you're going thru so just holdfast and tight. I know the Lord will give you the strength and the NeuroDrs the wisdom to get you on all the right meds and the course into this next chapter of your journey.
I will continue to pray for you and please keep us posted in Limboland as we are all still family.
Love,Hugs and prayers with best wishes on this journey that you can now fight stronger.
Again, I'm so happy you FINALLY know!
In Limbo and waiting but yet still blessed!
Tammy:)
The steroids are giving you the high feeling, but I think the real underlying reaction you are having is more validation... and from your post, sounds like you have a bit of take the bull by the horns personality! I am the same :)
I am not far ahead of you on the MS road.... It became clear last June something was not right, back pain, arm and hand numbness.... my primary doc thought MS within a month, all the specialist were less likely to jump on the bandwagon. Took a spinal tap to clear things up. My diagnosis was in November. I am an upbeat person and all my life have the attitude of taking things head on. I have yet to feel depressed or any type of self pity... so don't think you have to experience that. Everyone is different.
I took the route of educating myself, reading all the studies and theories... Started trying different supplements to see what might help before I tried any prescription meds for the symptoms. I am on copaxone to try to modify the MS progression... but the supplements have been a huge help with the numbness, fatigue, spasms, etc....
I hope you keep the positive attitude.... feel its made a big difference for me!
Have you done any reading on the DMDs.... have any thoughts going into meeting with the neuro for what might be the option that you prefer?
Good luck with moving forward and keep posting!!
Jen
Sidesteps, I am so happy for you that you have a diagnosis finally and can now move forward. Of course, as others have said, it certainly isn't exciting that you have MS, but I can totally relate to your feelings of immense relief. I still haven't recevied my "official diagnosis" but I know it will be bitter sweet when it comes.
I am so thrilled that you are feeling better!! We love you and will continue to be here for you through the good, the bad, and the ugly :)
Blessings to you!!
Stacie
I am so thrilled that you are feeling better!! We love you and will continue to be here for you through the good, the bad, and the ugly :)
Blessings to you!!
Stacie
I am sorry for the diagnosis of MS but I am glad that now you can move on into the next step and have treatment options. I am wishing you the best and look forward to traveling this journey with you. Jordan is still in limboland but I can keep on learning until we are dx also. Glad you are feeling better!
HI Barb,
I'm so glad you are finally going to be able to begin therapy. Have you begun to research the options yet?
Hugs,
Tammy
I'm so glad you are finally going to be able to begin therapy. Have you begun to research the options yet?
Hugs,
Tammy
As others have said, your feelings are completely normal.
Don't be surprised if you go thru times when you're in total denial, as well.
'They've made a mistake, etc.' I STILL go thru that, despite everything. My head can be extremely hard.
Take your time processing everything, then make your treatment plans. We'll be here whenever you need us.
Hugs,
ess
Don't be surprised if you go thru times when you're in total denial, as well.
'They've made a mistake, etc.' I STILL go thru that, despite everything. My head can be extremely hard.
Take your time processing everything, then make your treatment plans. We'll be here whenever you need us.
Hugs,
ess
I am very sorry to hear you have joined the MS club. You already have received great messages of support and please add me to the list. This is a fab group of caring folks so stick around and feel the love which can heal your bod.
Blessings
Alex
Blessings
Alex
I'm so sorry you have MS, but I'm glad you now know your adversary's name and can take steps to deal with it.
I too, was relieved when I was told I'm not nuts, and it really is MS. It took me about a year and a half to wrap my mind around it, and I still have moments that I go through a whole spectrum of emotions around this.
Big, gentle hugs...
I too, was relieved when I was told I'm not nuts, and it really is MS. It took me about a year and a half to wrap my mind around it, and I still have moments that I go through a whole spectrum of emotions around this.
Big, gentle hugs...
COMMUNITY LEADER
I'm really not surprised your theory(s) have been proven correct and you've finally got your dx of MS. Welcome to the other side of the mountain, so sorry for the long journey but i'm so glad youve arrived!
Its so common to feel relief, but be warned, you may still experience feeling blue at some stage. Not everyone does but its also common, so try to take a little extra care of your self, chocolate cake or ice cream seems to be the top options around here.
HUGS.............JJ
Its so common to feel relief, but be warned, you may still experience feeling blue at some stage. Not everyone does but its also common, so try to take a little extra care of your self, chocolate cake or ice cream seems to be the top options around here.
HUGS.............JJ
not to take away from your post, but it continues to amaze me how we seem to "know" and then have to convince the "experts" that we do have what we know we have!
Thank you all ~
I am glad to be able to focus on something other than looking for a dx and the unknown...well, the unknown is still unknown but at least I have a direction. :)
I am glad to be able to focus on something other than looking for a dx and the unknown...well, the unknown is still unknown but at least I have a direction. :)
Sorry you got the dx but I am sure you are relieved to finally put a name to it. I know that when my neuro told me it was a relief but then in a while reality hit and I got in a funk for a while but got out of it.
So glad to hear that the IVSM worked for you, it worked wonders for me the times I have been on it too. I hope you continue to do better and better.
Take care,
Paula
So glad to hear that the IVSM worked for you, it worked wonders for me the times I have been on it too. I hope you continue to do better and better.
Take care,
Paula
Being newly dx'd it is a mixed bag - you are happy to have validation - no you are not nuts and yes there is definitely something wrong. You have such a positive attitude that you will come at this thing headfirst! As JaneK1975 said Congrats and condolences in the same breath,
I will be thinking of you - Keep us posted on your treatment options.
Take Care
Tracy
I will be thinking of you - Keep us posted on your treatment options.
Take Care
Tracy
I felt similar relief. MS is still often volatile and unpredictible, but once the diagnosis is official you can at least attack the disease with one of many available treatments that weren’t around 10 or 20 years ago.
I too felt relief when finally someone said I wasn't crazy, that I had MS.
your emotions will bounce for awhile for sure. Happy you have a label but not happy that you have MS. But true, now you can attack it, knowing that you know. Thanks for updating us
Hang with us for sure!
your emotions will bounce for awhile for sure. Happy you have a label but not happy that you have MS. But true, now you can attack it, knowing that you know. Thanks for updating us
Hang with us for sure!
Oops. I don't think it's odd at all to feel relief when you get an answer. You seem like a fighter and now you know what you are fighting. I'm VERY happy for you to be feeling forming relief with the steroids.
Best wishes as you move forward with a long-term treatment plan. I guess condolences and congratulations are in order? I know that sound weird, but I'm just trying to say that ambivalent feelings are valid. We are all here for you, as you have been here for us.
- Jane
Best wishes as you move forward with a long-term treatment plan. I guess condolences and congratulations are in order? I know that sound weird, but I'm just trying to say that ambivalent feelings are valid. We are all here for you, as you have been here for us.
- Jane
So sorry to hear of your diagnosis. Very hard words to hear. Emotions are probably all over the place. I am thinking of you and wishing you the best,
Hugs,
Michelle
Hugs,
Michelle
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