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Limbo, cognitive symptoms, impending marriage...eek!
Hello friends,
This is my first post on this board, but I've been reading here for several weeks and I feel as if I already know several of you. I am a limbolander. Here's a quick summary of recent events:
My "attack," if it was an attack, began on Sept 1 and lasted two weeks: tingling, weakness, and numbness in the right leg & arm, & right side of face. Had a normal CT & neuro exam in the ER, followed by another normal neuro exam and an MRI (no contrast, insurance would not approve). The MRI revealed one area of possible demyelination that the radiologist thought was probably not demyelination, but an enlarged Virchow-Robin space. It's on the wrong side of the brain for my symptoms. Also 3 or 4 punctate spots in other locations. Nothing that shouted "MS lesion," but not entirely unremarkable.
Consulted with new a neurologist, very thorough, who listened (yay!) and did a careful exam. He found positive Babinski and Hoffman's on right side, as well as right leg weakness. He thinks that MS is possible but that I may have had a small lacunar stroke, too tiny to show up on the tests I've had so far. He's doing bloodwork to check for MS mimics. I'm also waiting for scheduling of a second MRI (w/contrast, though it is probably too late for the contrast to be informative) & an MRA to rule out aneurysm. He wants to do a lumbar puncture next week as well.
Since the attack, I have had occasional recurrence of the weakness/tingling--it comes and goes at random. I've also had cognitive difficulties: difficulty finding words, bouts of confusion (e.g., feeling overwhelmed by choices at the store), many short-term memory lapses, and some trouble making abstract connections that would have previously been easy for me. My research so far indicates that all this is compatible with a mild stroke or with MS.
The cognitive symptoms are the most terrifying to me. I am a writer and editor by trade, so the experience of not being able to find words, typing the wrong word (approve instead of improve, for example), and losing my mental sharpness has me completely freaked out. My career goals, educational goals, and sense of who I am are all suddenly uncertain. (If my brain changes, am I still the same person? If not, who am I? etc. etc.)
Intertwined with these concerns is the approach of my wedding, planned for December 18, to a very wonderful man who has been fantastically supportive. He's also a "word person," and although he says he will love me whatever cognitive or physical changes I experience--and I believe that he means it--I'm finding myself in some doubt about whether it's right or fair to get married when I may have recurring and/or worsening cognitive problems indefinitely. I also understand that MS and stroke can both cause personality changes, another fear. Will I be/remain the person he thinks he is marrying?
Now, I get that life is uncertain. He could experience some sort of brain injury himself, after all. Either of us could be hit by a bus tomorrow. And marriage is about commitment, in sickness and health. We are 41 and 38, so it is not news to either of us that life presents plenty of challenges to the married as well as the single, the healthy as well as the unhealthy. (I also have type 1 diabetes, so I haven't been entirely healthy for years--that, by the way, is one reason my neuro thinks stroke is a possibility even though my blood pressure is on the low side of normal.) But but but...can I make a lifetime promise when the person I am might be changing rather drastically?
I know you folks can't answer that question for me. I guess I would really like to hear about the intersection of MS and relationships, as well as the effect of limbo/MS/cognitive stuff on trying to move forward with one's life, if that makes sense? Thank you for reading this very long post. I wish everyone wellness and peace.
violet
This is my first post on this board, but I've been reading here for several weeks and I feel as if I already know several of you. I am a limbolander. Here's a quick summary of recent events:
My "attack," if it was an attack, began on Sept 1 and lasted two weeks: tingling, weakness, and numbness in the right leg & arm, & right side of face. Had a normal CT & neuro exam in the ER, followed by another normal neuro exam and an MRI (no contrast, insurance would not approve). The MRI revealed one area of possible demyelination that the radiologist thought was probably not demyelination, but an enlarged Virchow-Robin space. It's on the wrong side of the brain for my symptoms. Also 3 or 4 punctate spots in other locations. Nothing that shouted "MS lesion," but not entirely unremarkable.
Consulted with new a neurologist, very thorough, who listened (yay!) and did a careful exam. He found positive Babinski and Hoffman's on right side, as well as right leg weakness. He thinks that MS is possible but that I may have had a small lacunar stroke, too tiny to show up on the tests I've had so far. He's doing bloodwork to check for MS mimics. I'm also waiting for scheduling of a second MRI (w/contrast, though it is probably too late for the contrast to be informative) & an MRA to rule out aneurysm. He wants to do a lumbar puncture next week as well.
Since the attack, I have had occasional recurrence of the weakness/tingling--it comes and goes at random. I've also had cognitive difficulties: difficulty finding words, bouts of confusion (e.g., feeling overwhelmed by choices at the store), many short-term memory lapses, and some trouble making abstract connections that would have previously been easy for me. My research so far indicates that all this is compatible with a mild stroke or with MS.
The cognitive symptoms are the most terrifying to me. I am a writer and editor by trade, so the experience of not being able to find words, typing the wrong word (approve instead of improve, for example), and losing my mental sharpness has me completely freaked out. My career goals, educational goals, and sense of who I am are all suddenly uncertain. (If my brain changes, am I still the same person? If not, who am I? etc. etc.)
Intertwined with these concerns is the approach of my wedding, planned for December 18, to a very wonderful man who has been fantastically supportive. He's also a "word person," and although he says he will love me whatever cognitive or physical changes I experience--and I believe that he means it--I'm finding myself in some doubt about whether it's right or fair to get married when I may have recurring and/or worsening cognitive problems indefinitely. I also understand that MS and stroke can both cause personality changes, another fear. Will I be/remain the person he thinks he is marrying?
Now, I get that life is uncertain. He could experience some sort of brain injury himself, after all. Either of us could be hit by a bus tomorrow. And marriage is about commitment, in sickness and health. We are 41 and 38, so it is not news to either of us that life presents plenty of challenges to the married as well as the single, the healthy as well as the unhealthy. (I also have type 1 diabetes, so I haven't been entirely healthy for years--that, by the way, is one reason my neuro thinks stroke is a possibility even though my blood pressure is on the low side of normal.) But but but...can I make a lifetime promise when the person I am might be changing rather drastically?
I know you folks can't answer that question for me. I guess I would really like to hear about the intersection of MS and relationships, as well as the effect of limbo/MS/cognitive stuff on trying to move forward with one's life, if that makes sense? Thank you for reading this very long post. I wish everyone wellness and peace.
violet
Thank you all for your wise, kind advice. It is much appreciated. And very comforting too.
Yes, I would be there for him if he was the one who'd gotten sick. And I would still want to go forward with the marriage. I have talked it all through with him, given him several chances to postpone the wedding, and so forth. He is solid. (I am so, so grateful to have this man in my life!)
He understands how scared I am, and why, and he says we'll get through whatever it is together. So, yes, I need to put my faith in him. I very much like Lulu's idea of couple's counseling too--I'm sure we would both benefit from that. Sarah, he hasn't come with me to my appointments so far, but he'll be there on Monday when I have the spinal tap.
In rereading my post and your responses, I'm realizing that what I'm mostly scared about isn't him; it's me and what will happen to me. This is just something I have to wrestle with as all of us do. Thank you again. I feel very welcome here.
Yes, I would be there for him if he was the one who'd gotten sick. And I would still want to go forward with the marriage. I have talked it all through with him, given him several chances to postpone the wedding, and so forth. He is solid. (I am so, so grateful to have this man in my life!)
He understands how scared I am, and why, and he says we'll get through whatever it is together. So, yes, I need to put my faith in him. I very much like Lulu's idea of couple's counseling too--I'm sure we would both benefit from that. Sarah, he hasn't come with me to my appointments so far, but he'll be there on Monday when I have the spinal tap.
In rereading my post and your responses, I'm realizing that what I'm mostly scared about isn't him; it's me and what will happen to me. This is just something I have to wrestle with as all of us do. Thank you again. I feel very welcome here.
Hi Violet
I echo what everyone else has said and I am so sorry that you have been experiencing all these neurological problems. You are in the right place to find support but I would suggest that you put your questions closer to home and have trust in your relationship with youf future husband.
If you can be honest and open about your fears and share what has been suggested then you are sharing this responsibility and this is a good foundation for a strong relationship. I am wondering if you went on your own for your appointments and would suggest asking your fiance if he would come with you next time to give him the opportunity to ask any questions he has.
Think about the vows you will share and the words you will both say when you get married and there you will find your answers. You are both in your middle age and obviously have not rushed into this decision to share the rest of your life together, None of us know what is ahead but if you love someone then love has no end. Even if you have MS then it does not mean you have to give up doing things you enjoy or putting your life on hold. Treasure every day and make the most of every moment, live in the present and trust your future husband..it sounds to me as if he loves you very much.
Believe in yourself, you are worth it and deserve to be loved.
With love
Sarah x
I echo what everyone else has said and I am so sorry that you have been experiencing all these neurological problems. You are in the right place to find support but I would suggest that you put your questions closer to home and have trust in your relationship with youf future husband.
If you can be honest and open about your fears and share what has been suggested then you are sharing this responsibility and this is a good foundation for a strong relationship. I am wondering if you went on your own for your appointments and would suggest asking your fiance if he would come with you next time to give him the opportunity to ask any questions he has.
Think about the vows you will share and the words you will both say when you get married and there you will find your answers. You are both in your middle age and obviously have not rushed into this decision to share the rest of your life together, None of us know what is ahead but if you love someone then love has no end. Even if you have MS then it does not mean you have to give up doing things you enjoy or putting your life on hold. Treasure every day and make the most of every moment, live in the present and trust your future husband..it sounds to me as if he loves you very much.
Believe in yourself, you are worth it and deserve to be loved.
With love
Sarah x
Hi Violet,
I am fairly new to this board, and am in limbo - going through more testing for MS - was dx possible MS and started meds, but need 2nd opinion. I thought I was ready to move forward with my life until the 2nd opinion has opened up new doubts. So I think for me, it's hard to move forward until I'm more certain I know what's going on with me. Right now this is a big distraction!
As to how this has affected my relationships - I have some days when I feel bad that my husband of 33 years has to put up with my insecurities, and my not feeling well. But like you said, you never know what life is going to throw at you, and in a good marriage somehow you muddle through. Lots of talking, listening and patience is needed. I am lucky that my husband and I are in for the long haul - and like you pointed out, you never know what tomorrow may bring .....so just savor what you've got.
I am fairly new to this board, and am in limbo - going through more testing for MS - was dx possible MS and started meds, but need 2nd opinion. I thought I was ready to move forward with my life until the 2nd opinion has opened up new doubts. So I think for me, it's hard to move forward until I'm more certain I know what's going on with me. Right now this is a big distraction!
As to how this has affected my relationships - I have some days when I feel bad that my husband of 33 years has to put up with my insecurities, and my not feeling well. But like you said, you never know what life is going to throw at you, and in a good marriage somehow you muddle through. Lots of talking, listening and patience is needed. I am lucky that my husband and I are in for the long haul - and like you pointed out, you never know what tomorrow may bring .....so just savor what you've got.
my doctor just said the same thing to me today when I was questioning why my partner stayed with me after my diagnosis, and went trhough all the treatment with me. She said, he does it because he loves you. And she said, would you do the same thing if the roles were reversed, and for sure I would stand by him.
Also the mind has a fantastic ability to heal itself. My friend had a head injury and a bleed, and afterwards had issues with words and speaking, but with time got much better.
Also the mind has a fantastic ability to heal itself. My friend had a head injury and a bleed, and afterwards had issues with words and speaking, but with time got much better.
Hi and welcome.
You ask some pertinent questions that unfortunately can't be answered simply. Your relationship with your partner sounds solid - you have common interests to base your experiences on and that is critical.
Paula is right - we always twist that question, put the shoe on the other foot and ask "if it was your partner with these unknowns, would you bail?" Usually the answer is no, but as women we tend to want to throw ourselves on the fire as the sacrifice to keep others happy.
Don't sell this man short. Consider perhaps a session or two with a couples' counselor who can assist you in sorting out these feelings before you exchange the final I Do's.
Living with someone who is in limbo has to be difficult for a variety of reasons. there are many people who take on that challenge knowingly and willingly. And do it full of love.
Having MS does not change who we are - we are still the same people, just living with a chronic disease.
I hope something in this makes sense and is of help to you.
be well, Lulu
You ask some pertinent questions that unfortunately can't be answered simply. Your relationship with your partner sounds solid - you have common interests to base your experiences on and that is critical.
Paula is right - we always twist that question, put the shoe on the other foot and ask "if it was your partner with these unknowns, would you bail?" Usually the answer is no, but as women we tend to want to throw ourselves on the fire as the sacrifice to keep others happy.
Don't sell this man short. Consider perhaps a session or two with a couples' counselor who can assist you in sorting out these feelings before you exchange the final I Do's.
Living with someone who is in limbo has to be difficult for a variety of reasons. there are many people who take on that challenge knowingly and willingly. And do it full of love.
Having MS does not change who we are - we are still the same people, just living with a chronic disease.
I hope something in this makes sense and is of help to you.
be well, Lulu
Violet,
Hi and welcome to the forum, this is the most wonderful place to find support that you need.
I am glad you found a neuro willing to listen, there are so many out there that just blow off their patients and wait for things to get worse before they believe them or take any interest.
As for your appending wedding, he loves you and wants to be with you and take care of you. Ask yourself this, if he was to find out that he could have MS or any other disease would that send you running? Would you want him to change his mind and not marry you if he were the one who was ill? When there is true love involved it shouldn't matter if there is an illness involved or not.
Discuss your concerns with him and let him have a say in what he wants, it will mean a lot to him and it will make you feel better because you gave him the choice. I did that with my dh and he chose to stick it out with me because his love is stronger than this disease.
I know I haven't helped much but I am sure others will have their own input on this.
Take care and please stay around to offer and recieve support.
Paula
Hi and welcome to the forum, this is the most wonderful place to find support that you need.
I am glad you found a neuro willing to listen, there are so many out there that just blow off their patients and wait for things to get worse before they believe them or take any interest.
As for your appending wedding, he loves you and wants to be with you and take care of you. Ask yourself this, if he was to find out that he could have MS or any other disease would that send you running? Would you want him to change his mind and not marry you if he were the one who was ill? When there is true love involved it shouldn't matter if there is an illness involved or not.
Discuss your concerns with him and let him have a say in what he wants, it will mean a lot to him and it will make you feel better because you gave him the choice. I did that with my dh and he chose to stick it out with me because his love is stronger than this disease.
I know I haven't helped much but I am sure others will have their own input on this.
Take care and please stay around to offer and recieve support.
Paula
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