Aa
How do you commit to a diagnosis ?
Hi,
I have had symptoms come and go for a year now. Currently I find the pain and spasticity unbearable. I remember my neuro really believed all along that we would decide that I had MS. But as he "thought" it, I wanted more proof. I guess there really is no positive proof, no one can say definitively that you have MS. I know I have 5 O-Bands, 3 lesions in the "perfect spots". My question is how do people come to terms with the guessing that is part of an auto-immune disease? I hate both the thought of being put in a box and not doing anything to make me feel better or to stop the progression. I have changed quite a bit over the past year. In my heart I do believe that I have MS (and the current believe is another auto-immune). So why am so reluctant to be put in that unbearable.box? How will this effect me as I think about retirement? Will I be able to find insurance? Has anyone else felt like this? I could have gotten a prescription today - but I needed more time. Friday I go back with my husband--
Thoughts?
I have had symptoms come and go for a year now. Currently I find the pain and spasticity unbearable. I remember my neuro really believed all along that we would decide that I had MS. But as he "thought" it, I wanted more proof. I guess there really is no positive proof, no one can say definitively that you have MS. I know I have 5 O-Bands, 3 lesions in the "perfect spots". My question is how do people come to terms with the guessing that is part of an auto-immune disease? I hate both the thought of being put in a box and not doing anything to make me feel better or to stop the progression. I have changed quite a bit over the past year. In my heart I do believe that I have MS (and the current believe is another auto-immune). So why am so reluctant to be put in that unbearable.box? How will this effect me as I think about retirement? Will I be able to find insurance? Has anyone else felt like this? I could have gotten a prescription today - but I needed more time. Friday I go back with my husband--
Thoughts?
Copaxone sounds good if that's what your doc is suggesting right now - unless you have any specific reason to believe you wouldn't be compliant with the daily injections. It sounds like he has taken a thoughtful approach to your care.
Many people have had great success with Copaxone over the years. If it holds off relapses for you and the potential site reactions are manageable you might decide to remain on it for a while.... and switch over to the three injections per week protocol in the future.
OR, you can start there and switch to something else at any time. Unless your doc likes his patients to stay on a disease modifier for some specific length of time (some do, so they can better evaluate effectiveness) these drugs are like most others. You (or the doc) choose one to start with and switch as necessary to find which one offers you the best combo of effectiveness and tolerable side effects as a unique individual.
I know a lot of people are excited about the orals and are eager to switch to (or start with) them. I understand that. Some of us have been waiting a very long time. And some have had a very difficult time injecting. But the old drugs do have an track record in MS treatment and well known side effects. I think they remain valid treatment choices and am actually glad to hear a doctor is still suggesting one of them.
For myself, I wonder how difficult it might be to start with a pill and have to switch over to an injection. I was highly motivated to fight MS when I started with Copaxone so I had a determination to get on with the process. I don't know how it might have been different to start with a pill first. I guess no different than a diabetic switching from taking pills to injecting insulin - but I've known a few people determined beyond reason to "stay off the needle". Oh well, doesn't matter I guess. Just rambling now. Apologies.
In the mean time, I hope you asked your doc to address your pain and spasticity. There are quite a few (non-narcotic) drugs to help those things. NONE of the disease modifying treatments claim to improve existing MS symptoms and they don't in my experience. You'll need to seek other remedies for those problems. They are manageable but take some time to work out. Medications help but in my opinion treatment directed by a physical therapist who understands the problems PwMS (people with MS) face is vital to finding relief and regaining function.
It sounds like you had a good visit. Good thoughts are being sent your way for a smooth course as you start whatever treatment you decide is right.
PS - You can still look for disability and/or life insurance. MS doesn't usually shorten life expectancy but a company might think you should pay more than someone without MS - or they might have coverage limitations. Disability insurance could be harder unless it's available through your employer. You might be better off starting some sort of personal funding to cover your own costs in the future in the case you became unable to work and were waiting for disability approval. I suppose a good financial advisor would be in order once you get the medical end a little more settled. Good luck with both.
Many people have had great success with Copaxone over the years. If it holds off relapses for you and the potential site reactions are manageable you might decide to remain on it for a while.... and switch over to the three injections per week protocol in the future.
OR, you can start there and switch to something else at any time. Unless your doc likes his patients to stay on a disease modifier for some specific length of time (some do, so they can better evaluate effectiveness) these drugs are like most others. You (or the doc) choose one to start with and switch as necessary to find which one offers you the best combo of effectiveness and tolerable side effects as a unique individual.
I know a lot of people are excited about the orals and are eager to switch to (or start with) them. I understand that. Some of us have been waiting a very long time. And some have had a very difficult time injecting. But the old drugs do have an track record in MS treatment and well known side effects. I think they remain valid treatment choices and am actually glad to hear a doctor is still suggesting one of them.
For myself, I wonder how difficult it might be to start with a pill and have to switch over to an injection. I was highly motivated to fight MS when I started with Copaxone so I had a determination to get on with the process. I don't know how it might have been different to start with a pill first. I guess no different than a diabetic switching from taking pills to injecting insulin - but I've known a few people determined beyond reason to "stay off the needle". Oh well, doesn't matter I guess. Just rambling now. Apologies.
In the mean time, I hope you asked your doc to address your pain and spasticity. There are quite a few (non-narcotic) drugs to help those things. NONE of the disease modifying treatments claim to improve existing MS symptoms and they don't in my experience. You'll need to seek other remedies for those problems. They are manageable but take some time to work out. Medications help but in my opinion treatment directed by a physical therapist who understands the problems PwMS (people with MS) face is vital to finding relief and regaining function.
It sounds like you had a good visit. Good thoughts are being sent your way for a smooth course as you start whatever treatment you decide is right.
PS - You can still look for disability and/or life insurance. MS doesn't usually shorten life expectancy but a company might think you should pay more than someone without MS - or they might have coverage limitations. Disability insurance could be harder unless it's available through your employer. You might be better off starting some sort of personal funding to cover your own costs in the future in the case you became unable to work and were waiting for disability approval. I suppose a good financial advisor would be in order once you get the medical end a little more settled. Good luck with both.
Hi,
My neuro believes that it is time to start fighting the MS. We all three agreed. We talked about Insurance going forward. I hold our insurance and work for such a large company that I am but a minion in that regard. My husband also works for a large company and could start insurance if I was unable to work (we work for the same company, so he can't take insurance out now). My neuro said that though I have no official diagnosis on record, I have created a history with my meds and the MRI's as well as the multiple neuros I have seen. But we could wait if I want, he could be vague. I'm not sure it matters. I would just not start the meds and I do want to.
I guess life insurance is the key I don't have, just term insurance. Not sure what to do now.
I will not be discussing my MS at work for now. I feel it's best for my career.
As for meds, a few days ago he wanted me to go on the new oral. But after attending a roll out, and discussing my case with other neuros. He had concerns about the drug. He wants to have start Copaxone. We did discuss each drug in detail. He would start me on anything I want.
What does everyone thing about starting with Copaxone?
Maureen
My neuro believes that it is time to start fighting the MS. We all three agreed. We talked about Insurance going forward. I hold our insurance and work for such a large company that I am but a minion in that regard. My husband also works for a large company and could start insurance if I was unable to work (we work for the same company, so he can't take insurance out now). My neuro said that though I have no official diagnosis on record, I have created a history with my meds and the MRI's as well as the multiple neuros I have seen. But we could wait if I want, he could be vague. I'm not sure it matters. I would just not start the meds and I do want to.
I guess life insurance is the key I don't have, just term insurance. Not sure what to do now.
I will not be discussing my MS at work for now. I feel it's best for my career.
As for meds, a few days ago he wanted me to go on the new oral. But after attending a roll out, and discussing my case with other neuros. He had concerns about the drug. He wants to have start Copaxone. We did discuss each drug in detail. He would start me on anything I want.
What does everyone thing about starting with Copaxone?
Maureen
Having an official diagnosis of MS CAN change your ability to get or keep insurance - health, disability, life. This may not be a popular opinion but (for this reason alone) I'd personally want to be as settled as possible with those types of arrangements before proceeding to an 'official' diagnosis. Truth be told, a diagnostic investigation that appears to be geared toward a MS diagnosis can be enough to scare off insurance carriers.
My supervisor and co-workers know my diagnosis and are very understanding, even helpful. They also know I am trying to hold out on the job until I'm eligible for Medicare health benefits. I'm getting old so they know they aren't going to be 'stuck' taking up my slack forever. They are also very kind, caring and loyal people.
My husband's company - not so much. He though nothing of sharing by diagnosis at his workplace. Co-workers were supportive but it wasn't long before management found an excuse to cut his hours and eliminate his benefits (all the while making him feel like a hero about it). It was a while before we realized they were never going to reinstate his full-time hours or benefits - as they had promised. They clearly don't want to bankrupt their self-insured health care program paying for something as expensive as MS treatment.
So now I work the minimum hours allowed to purchase employer sponsored health care benefits. I don't bring home a lot of cash of paydays because I literally work to pay for the benefits I now carry on myself AND my husband. He qualifies for Medicare since last years but they pay nothing as they are considered his secondary payer AND I'm not allowed to drop his coverage at work as long as my employer offers a spousal coverage option.
I find it's a tight squeeze between this rock and hard place so I agree with Lulu's advice to be careful about when you decide to disclose any info concerning your diagnosis. Your employer has no intrinsic right to know as long as your silence doesn't jeopardize anyone else. Once you share no one will be able to un-know what they know..... you know?
As far as the "What if it's really something else?" question.... there isn't really a problem. As time goes on you and your neuro should both be keeping an eye peeled for clues that additional or alternate diagnoses are in play. The worst thing is that the real culprit can go untreated for a period of time. But is that really any different than your present situation? If testing to this point hasn't yielded any other cause at least as likely as MS, then your best course might well be to go down this path for a while. Diagnoses can always be rescinded at a later date if new evidence emerges. Just know, once a diagnosis is uttered insurers aren't quick to forget it. Not a reason to fear or unnecessarily delay treatment - just a reason to get things in the best order you can before the diagnostic code is entered on your chart.
What type of prescription are you talking about? A disease modifier specific to MS treatment? One of those drugs would require a specific diagnosis. Symptom treatment however, is entirely possible under a less specific diagnosis. You should be able to receive treatment for spasticity and pain control at any time. In fact, I believe it is irresponsible of your doc(s) if they have left you suffering all this time when relief is entirely available. Please make sure you address this no matter what you decide about committing to diagnosis.
All this said, you most likely shouldn't delay starting a disease modifying treatment very much longer. Choosing a therapy and sticking to it is the best plan presently available to help prevent the development of future debilitating symptoms. It's usually too late to undo damage once a relapsed state hits.
It's a difficult thing you face for sure. We desperately long for and need firm answers. Yet as it becomes clear the answer just might be MS, our relief is too often short lived. It vanishes as soon as we realize this diagnosis erases some of the hope we've secretly held onto for a lasting cure and return to prior normals. It's a rough road to acceptance and then moving on to begin living life with MS. Best as it looks around here the process takes at least a year.
Good luck with your pondering. I'm glad you asked for some help sorting through this. In the end it's going to be your choice to decide what's right for you. We'll be with you, supporting your decision - whatever it is at this moment. Let us know how it goes Friday.
My supervisor and co-workers know my diagnosis and are very understanding, even helpful. They also know I am trying to hold out on the job until I'm eligible for Medicare health benefits. I'm getting old so they know they aren't going to be 'stuck' taking up my slack forever. They are also very kind, caring and loyal people.
My husband's company - not so much. He though nothing of sharing by diagnosis at his workplace. Co-workers were supportive but it wasn't long before management found an excuse to cut his hours and eliminate his benefits (all the while making him feel like a hero about it). It was a while before we realized they were never going to reinstate his full-time hours or benefits - as they had promised. They clearly don't want to bankrupt their self-insured health care program paying for something as expensive as MS treatment.
So now I work the minimum hours allowed to purchase employer sponsored health care benefits. I don't bring home a lot of cash of paydays because I literally work to pay for the benefits I now carry on myself AND my husband. He qualifies for Medicare since last years but they pay nothing as they are considered his secondary payer AND I'm not allowed to drop his coverage at work as long as my employer offers a spousal coverage option.
I find it's a tight squeeze between this rock and hard place so I agree with Lulu's advice to be careful about when you decide to disclose any info concerning your diagnosis. Your employer has no intrinsic right to know as long as your silence doesn't jeopardize anyone else. Once you share no one will be able to un-know what they know..... you know?
As far as the "What if it's really something else?" question.... there isn't really a problem. As time goes on you and your neuro should both be keeping an eye peeled for clues that additional or alternate diagnoses are in play. The worst thing is that the real culprit can go untreated for a period of time. But is that really any different than your present situation? If testing to this point hasn't yielded any other cause at least as likely as MS, then your best course might well be to go down this path for a while. Diagnoses can always be rescinded at a later date if new evidence emerges. Just know, once a diagnosis is uttered insurers aren't quick to forget it. Not a reason to fear or unnecessarily delay treatment - just a reason to get things in the best order you can before the diagnostic code is entered on your chart.
What type of prescription are you talking about? A disease modifier specific to MS treatment? One of those drugs would require a specific diagnosis. Symptom treatment however, is entirely possible under a less specific diagnosis. You should be able to receive treatment for spasticity and pain control at any time. In fact, I believe it is irresponsible of your doc(s) if they have left you suffering all this time when relief is entirely available. Please make sure you address this no matter what you decide about committing to diagnosis.
All this said, you most likely shouldn't delay starting a disease modifying treatment very much longer. Choosing a therapy and sticking to it is the best plan presently available to help prevent the development of future debilitating symptoms. It's usually too late to undo damage once a relapsed state hits.
It's a difficult thing you face for sure. We desperately long for and need firm answers. Yet as it becomes clear the answer just might be MS, our relief is too often short lived. It vanishes as soon as we realize this diagnosis erases some of the hope we've secretly held onto for a lasting cure and return to prior normals. It's a rough road to acceptance and then moving on to begin living life with MS. Best as it looks around here the process takes at least a year.
Good luck with your pondering. I'm glad you asked for some help sorting through this. In the end it's going to be your choice to decide what's right for you. We'll be with you, supporting your decision - whatever it is at this moment. Let us know how it goes Friday.
Hi Maureen,
Since work is the big worry right now, is there a need to tell anyone and everyone there? IT is your health history and you have the right to self-disclose when you are comfortable with this. Don't be bullied into it at work.
Boxes always come with lids/flaps/openings. Find that opening for yourself and you might be surprised that there is a big life outside of the MS box.
good luck, Laura
Since work is the big worry right now, is there a need to tell anyone and everyone there? IT is your health history and you have the right to self-disclose when you are comfortable with this. Don't be bullied into it at work.
Boxes always come with lids/flaps/openings. Find that opening for yourself and you might be surprised that there is a big life outside of the MS box.
good luck, Laura
Thanks, I feel you understand
Life from here - does change. Some bosses are more understanding than others, Sometimes in large companies there is a lot of politics and finger pointing between groups. I am very highly visible in the scheme of things and fear I would be giving them ammo. I fear letting people down. I fear getting good insurance after I retire. I fear, I fear
I also worry I have something else definitely going on that no one can pinpoint. What if it's not MS and it's all that ?
I guess Ill decide to accept the diagnosis and start treatment (he recommends the new pill)
We (my husband and I) will meet with him Friday to make a plan
Again, Thanks
Maureen
Life from here - does change. Some bosses are more understanding than others, Sometimes in large companies there is a lot of politics and finger pointing between groups. I am very highly visible in the scheme of things and fear I would be giving them ammo. I fear letting people down. I fear getting good insurance after I retire. I fear, I fear
I also worry I have something else definitely going on that no one can pinpoint. What if it's not MS and it's all that ?
I guess Ill decide to accept the diagnosis and start treatment (he recommends the new pill)
We (my husband and I) will meet with him Friday to make a plan
Again, Thanks
Maureen
Darn twitchy fingers!!! I wasn't done, lol!
Hi again Maureen,
I've had the same kind of struggle with the diagnosis. For me, doubt in my doctors' diagnoses came from being misdiagnosed many times over the years - but for different things. I now have some trust issues... So, in the back of my mind- I can start thinking there has to be some kind of mistake. Thankfully, that part is mostly over for me, but it does still come up once in a while.
I think another reason is because it's hard to give up the idea that we have control over our lives and health. We do have a degree of control over some aspects, but autoimmune diseases usually don't care that you've taken good care of yourself. They just have to be accepted. It's taken me about three years, but even now- if I have a bad relapse, I'm back to grieving for my lost control over my life.
As for insurance. I don't think you can be denied employee health insurance. They may be able to apply a waiting period for pre-existing conditions though. Private health insurance might be tough to get though.
Tammy
Hi again Maureen,
I've had the same kind of struggle with the diagnosis. For me, doubt in my doctors' diagnoses came from being misdiagnosed many times over the years - but for different things. I now have some trust issues... So, in the back of my mind- I can start thinking there has to be some kind of mistake. Thankfully, that part is mostly over for me, but it does still come up once in a while.
I think another reason is because it's hard to give up the idea that we have control over our lives and health. We do have a degree of control over some aspects, but autoimmune diseases usually don't care that you've taken good care of yourself. They just have to be accepted. It's taken me about three years, but even now- if I have a bad relapse, I'm back to grieving for my lost control over my life.
As for insurance. I don't think you can be denied employee health insurance. They may be able to apply a waiting period for pre-existing conditions though. Private health insurance might be tough to get though.
Tammy
Ohhhh, I believe entirely that there is positive proof of MS and that you have it. People have been dx'd with less than the evidence you've presented. May be time for a new neuro or to really pin down this neuro and cause him to stop waffling on you. Your pain level alone with spasms, etc is indicative of MS, though pain is not diagnostic, whereas O-bands and MRI's, etc., taken together, certainly are. I'm with Kyle again, all over this. You need help for the pain now and may not get adequate relief unless you have an adequate dx. Don't worry about the rest. Each day has worries sufficient unto itself. Right? We can truly live with this disease most of the time if we have good treatment and good medical care providers who work together to help us. Hard to find that comprehensive care team of medical providers, but I'm slowly getting there. Believing you will too!
Maureen,
" I hate both the thought of being put in a box and not doing anything to make me feel better or to stop the progression."
I'd hate that too :-)
I don't consider myself as having been put in a box, nor would I say I'm standing idly by while MS has its way with me! I am doing anything and everything I can to fight my MS.
If I read your post correctly you have a desk job in IS. Me too. I'm not a coder, but rather an IS project manager. Everyone at works knows I have MS. I told them up front, as I didn't want any speculation about why I might look like I had too many beers at lunch :-)
No one reacts differently to me now that they now. I believe that they are reflecting my approach to MS. I have it, and to quote a friend's five year old son, "So what? Who cares? Big deal!
I am using every tool at my disposal to fight; neurologist, naturopath, psychologist. I have an incurable disease of the central nervous system. So what? who cares? big deal! :-)
Kyle
PS I'm with JJ as to neurologist #4. I have never heard of IVIG as anyone's go to treatment for either MS or MG.
" I hate both the thought of being put in a box and not doing anything to make me feel better or to stop the progression."
I'd hate that too :-)
I don't consider myself as having been put in a box, nor would I say I'm standing idly by while MS has its way with me! I am doing anything and everything I can to fight my MS.
If I read your post correctly you have a desk job in IS. Me too. I'm not a coder, but rather an IS project manager. Everyone at works knows I have MS. I told them up front, as I didn't want any speculation about why I might look like I had too many beers at lunch :-)
No one reacts differently to me now that they now. I believe that they are reflecting my approach to MS. I have it, and to quote a friend's five year old son, "So what? Who cares? Big deal!
I am using every tool at my disposal to fight; neurologist, naturopath, psychologist. I have an incurable disease of the central nervous system. So what? who cares? big deal! :-)
Kyle
PS I'm with JJ as to neurologist #4. I have never heard of IVIG as anyone's go to treatment for either MS or MG.
COMMUNITY LEADER
Hey Maureen, thanks for still talking to me, gosh did i freak when i saw my blooper of epic proportions, i've asked the mods to delete my post but so far its still up and driving me mental!!! I'm very sorry for loosing my mind on you :(
Take two:
You are still the Maureen who's the best at what she does, you were still everything you were before your health issues got named, to me your still you in every way!
In a perfect world, labels wouldn't ever be viewed in a negative way, unfortunately we all know that's not always how it is. I honestly don't know that you can predict if it will or wont affect your position at work, or if some people (bosses or colleagues) would change their view of you. Not helpful i know but i'd assume nothing will change because you have MS (or MS plus) and just keep being you.
On my count that's 3 out of the 4, 2 saying they have enough evidence for them to name it MS now and start treatment, 1 saying its probably MS but i need more evidence before I can name it. The 4th was also calling it MS but with the addition of MG but retracted MS and MG because there was no evidence of MG. I'd not be counting that neuro's opinion simply because doing that isn't logical to me.
Your issue is what if it's not MS, but if you have the diagnostic evidence of MS then why wouldn't it be MS?
You can 'wait and see' as the MS specialist is suggesting, if you need more answers before you can trust it is MS, then wait and get your answers but do what 'you' feel is the right thing for you!
Hugs........JJ
(I still feel horrible and really sorry for my blooper)
Take two:
You are still the Maureen who's the best at what she does, you were still everything you were before your health issues got named, to me your still you in every way!
In a perfect world, labels wouldn't ever be viewed in a negative way, unfortunately we all know that's not always how it is. I honestly don't know that you can predict if it will or wont affect your position at work, or if some people (bosses or colleagues) would change their view of you. Not helpful i know but i'd assume nothing will change because you have MS (or MS plus) and just keep being you.
On my count that's 3 out of the 4, 2 saying they have enough evidence for them to name it MS now and start treatment, 1 saying its probably MS but i need more evidence before I can name it. The 4th was also calling it MS but with the addition of MG but retracted MS and MG because there was no evidence of MG. I'd not be counting that neuro's opinion simply because doing that isn't logical to me.
Your issue is what if it's not MS, but if you have the diagnostic evidence of MS then why wouldn't it be MS?
You can 'wait and see' as the MS specialist is suggesting, if you need more answers before you can trust it is MS, then wait and get your answers but do what 'you' feel is the right thing for you!
Hugs........JJ
(I still feel horrible and really sorry for my blooper)
JJ
I do not have difficulty making decisions. I just wonder how this new title will effect me at my job. I love my job, I am the best at it where I work. I am counted on in a big way. Parts of my job, I and only I can do. I guess I fear I won't be the go to person, I will have to be replaced, sooner than I would like. My job requires a lot of knowledge an computer coding. I surprisingly am not depressed over the diagnosis. I'm tough and I can take it. I also have seen it coming in the back of my mind.
I guess part me just wonders, what happens if its not MS. I have symptoms not "MS like". The belief is that it's MS and something else, they can't seem to pinpoint. the belief is the meds would probably help both. I have seen 4 neuros. The first is my main one, a general neuro whom has always suspected MS. He has sent me to 3 others.
The first referral MS specialist said it might be MS, let's wait and see if things get worse.
The second suspects MS and something else,
the third a MS specialist, believed yes I did, but when an IVIG treatment they gave me (suspicion of myasthenia gravis) didn't work, she changed her mind.
I guess that's my issue - 4 neuros and only 2 currently say yes, start treatment
My issue is what if it's not MS?
Maureen
COMMUNITY LEADER
AGGGGGHHHHHHHHHHHH!
OMG that should read you are NOT alone....... my heart is pounding in shock, please please please forgive my stupid cognitive error, I swear I read it and did not see the error until just this moment!!
so so sorry!
OMG that should read you are NOT alone....... my heart is pounding in shock, please please please forgive my stupid cognitive error, I swear I read it and did not see the error until just this moment!!
so so sorry!
COMMUNITY LEADER
You are not alone in feeling this way!
I thought maybe getting into the why of it, maybe of some help to understanding your difficulties in moving forward.
Whilst reading your post a few thoughts went through my head....1) has difficulty making decisions always been a problem for you? 2) is this a newly developing cognitive issue because of MS? 3) could this be sign's of depression/anxiety?
I think the first would probably be less of an issue because if you're typically cautious, you will eventually nut it out as you have always done. The second and third thoughts are a different story, both quite possible and they could even be interconnected.
In regards to the second, there is little doubt that MS causes cognitive issues but the research is still discovering what cognitive areas are specifically effected. There is a lot more to discover, the research is on going but what is known, is that cognitive issues are more prevalent than was previously believed. Research is placing it somewhere around 60%, so its worth considering as a possibility in what's happening here.
http://www.medscape.com/viewarticle/568707
The above is worth reading but there are many MS organisations with information about cognitive issues that have been connected to MS, which I would highly recommend you read too.
Depression and or anxiety are also possible too, but there's more to it than what you've mentioned, so its in your best interest to think about it and if its remotely possible that you could be dealing with depression and or anxiety, then please speak to your dr, because there is help available if you feel you may need additional support.
Food for thought!
Hugs.........JJ
I thought maybe getting into the why of it, maybe of some help to understanding your difficulties in moving forward.
Whilst reading your post a few thoughts went through my head....1) has difficulty making decisions always been a problem for you? 2) is this a newly developing cognitive issue because of MS? 3) could this be sign's of depression/anxiety?
I think the first would probably be less of an issue because if you're typically cautious, you will eventually nut it out as you have always done. The second and third thoughts are a different story, both quite possible and they could even be interconnected.
In regards to the second, there is little doubt that MS causes cognitive issues but the research is still discovering what cognitive areas are specifically effected. There is a lot more to discover, the research is on going but what is known, is that cognitive issues are more prevalent than was previously believed. Research is placing it somewhere around 60%, so its worth considering as a possibility in what's happening here.
http://www.medscape.com/viewarticle/568707
The above is worth reading but there are many MS organisations with information about cognitive issues that have been connected to MS, which I would highly recommend you read too.
Depression and or anxiety are also possible too, but there's more to it than what you've mentioned, so its in your best interest to think about it and if its remotely possible that you could be dealing with depression and or anxiety, then please speak to your dr, because there is help available if you feel you may need additional support.
Food for thought!
Hugs.........JJ
Dear Maks,
I think a lot of us have had the same thoughts about diagnosis and our future, especially in the beginning. With time, a lot of the anxiety does go away but having a diagnosis of MS does put one in a box, using your words, but you determine what size and shape that box will have,
will you let it restrict you or will you make IT fit into YOUR lifestyle?
In my experience , it does shape your life and it changed my career but not by my choice. Instead of my old job I have new outlets for my knowledge and work experience. A lot of it is more satisfying than my old job , though I will not lie and say I wouldn't do it again if hired back.
Yes, having a chronic illness does make one think about the future,something few people like to do. It so much easier to live in the present than worry about the future. For me , things are starting to balance out and I am finding that I am tougher than I thought. I bet you are too!!
It takes time to adjust to a change in the way we view our world and our future. There will be a day that the fact that you have the diagnosis of MS doesn't enter your ever waking moment and you can forget that it is now part of you.
I hope you can find peace with this new diagnosis. Please know you are not alone, either in your thoughts or in a place where you can't share them. We are always here to help support, answer or make you laugh.
Best,
Ren
I think a lot of us have had the same thoughts about diagnosis and our future, especially in the beginning. With time, a lot of the anxiety does go away but having a diagnosis of MS does put one in a box, using your words, but you determine what size and shape that box will have,
will you let it restrict you or will you make IT fit into YOUR lifestyle?
In my experience , it does shape your life and it changed my career but not by my choice. Instead of my old job I have new outlets for my knowledge and work experience. A lot of it is more satisfying than my old job , though I will not lie and say I wouldn't do it again if hired back.
Yes, having a chronic illness does make one think about the future,something few people like to do. It so much easier to live in the present than worry about the future. For me , things are starting to balance out and I am finding that I am tougher than I thought. I bet you are too!!
It takes time to adjust to a change in the way we view our world and our future. There will be a day that the fact that you have the diagnosis of MS doesn't enter your ever waking moment and you can forget that it is now part of you.
I hope you can find peace with this new diagnosis. Please know you are not alone, either in your thoughts or in a place where you can't share them. We are always here to help support, answer or make you laugh.
Best,
Ren
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