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How do you deal with uncertainty?
Ever since my last neuro appt I can't get out of my head that I might have MS. I have an appt on Thursday for a LP but was told that it would take 7-10 days to get the results. I can't stop thinking about it. I'm not going to find out anything for possibly 3 weeks and even then if the LP comes back normal I'll have to wait longer for a dx so more tests can be ran.
Whether you're waiting a dx, someone newly dx, or someone who has had MS for yrs how do you deal? I know I don't know what's wrong with me yet but my gut is telling me it's MS and I just can't stop thinking about it.
Like I've said in previous posts my husband is in Afghanistan, and although he knows what's going on he doesn't know how badly this is eating me up.
On a good note I found out that my neuro specializes in MS so that is comforting. I'm trying to stay as positive as I can but I'd be lying if I didn't say I wasn't scared ******** (sorry for the language)!
Whether you're waiting a dx, someone newly dx, or someone who has had MS for yrs how do you deal? I know I don't know what's wrong with me yet but my gut is telling me it's MS and I just can't stop thinking about it.
Like I've said in previous posts my husband is in Afghanistan, and although he knows what's going on he doesn't know how badly this is eating me up.
On a good note I found out that my neuro specializes in MS so that is comforting. I'm trying to stay as positive as I can but I'd be lying if I didn't say I wasn't scared ******** (sorry for the language)!
Thank you all for the comments again. I am not the traditional religious person who goes to church. I do pray from time to time, when I feel it's truly warranted. I do feel this is one of those times, but I have yet to find solace in my prayers for this situation.
I do not have any siblings and I tried to confide in 1 friend but he blew me off. I think it was too much for him! :(
I do not have any siblings and I tried to confide in 1 friend but he blew me off. I think it was too much for him! :(
I encourage you to reach out to someone who can be support to you. Sister, brother, friend? Take someone with you to the appointments who you are not scared to talk in front of, and who will fill in the gaps of stuff you forget, and stick up for you if the doctor seems to dismiss your symptoms, but now it sounds like your doctor is taking you serious ... good luck on your procedure, nurses are the ones to ask your questions too IMO they have seen the before during and after where as doctors just do the procedure and leave you in recovery! :)
I'm so sorry that you are going thru so much with your husband gone. I can completely understand what you are feeling. My husband is in the Army and has deployed several times in the past 15 yrs of marriage.
He got deployed 1 week before I flew to Seattle and got diagnosed with MS. It was 2 yrs of Drs not knowing or seeming to care what was wrong with me. I had my LP a week after I met with the MS Dr. Everything that I went thru, I felt I couldn't do it alone or I couldn't handle it. God has a way of giving us what we can handle, even tho I feel like giving up sometimes.
I know you don't want to worry your husband, but you need someone to talk to. I know my husband would want me to be straight with him about what's going on with me. I would want him to tell me if something were wrong with him.
This disease is very unpredictable. It's good to be knowledgeable or informed about the disease but sometimes it's too much information, not all of it accurate. Try to take things a day at a time. You have many friends here if you ever need to talk.
Good luck on the LP and I'll be saying prayers for things to go well. I want you to get answers but hope it's not MS.
Hugs
Kristi
He got deployed 1 week before I flew to Seattle and got diagnosed with MS. It was 2 yrs of Drs not knowing or seeming to care what was wrong with me. I had my LP a week after I met with the MS Dr. Everything that I went thru, I felt I couldn't do it alone or I couldn't handle it. God has a way of giving us what we can handle, even tho I feel like giving up sometimes.
I know you don't want to worry your husband, but you need someone to talk to. I know my husband would want me to be straight with him about what's going on with me. I would want him to tell me if something were wrong with him.
This disease is very unpredictable. It's good to be knowledgeable or informed about the disease but sometimes it's too much information, not all of it accurate. Try to take things a day at a time. You have many friends here if you ever need to talk.
Good luck on the LP and I'll be saying prayers for things to go well. I want you to get answers but hope it's not MS.
Hugs
Kristi
I have Multiple Myeloma, no MS, but was in liboland for way too long before my cancer diagnois.
What helped me accept my diagnosis? Well at first I really had to stop thinking so far ahead and just deal with today, and all the treatments (get through chemo, get through my stem cell transplant etc)
But then after my transplant I was just in recovery mode.
I was in contact with a pastor at my church, who is also a family councilor, she would message me and ask how I was doing once I said "physically ok, but mentally :| " I sent her the smiley. She told me to come in and talk to her, and then we met weekly for almost 6 months, and I'm now feeling ok about my future (not knowing), and keep doing what I want in the capacity that I am able!
Oh and I'm in the process of filing a formal complaint letter against the MS doctor who delayed my diagnosis through patient affairs at the hospital (I am going to send it to the cheif of medicine and have him review my file). At the time it was happening I was too weak to do anything but no I'm feeling better and ready to address my bad treatment by this doctor
What helped me accept my diagnosis? Well at first I really had to stop thinking so far ahead and just deal with today, and all the treatments (get through chemo, get through my stem cell transplant etc)
But then after my transplant I was just in recovery mode.
I was in contact with a pastor at my church, who is also a family councilor, she would message me and ask how I was doing once I said "physically ok, but mentally :| " I sent her the smiley. She told me to come in and talk to her, and then we met weekly for almost 6 months, and I'm now feeling ok about my future (not knowing), and keep doing what I want in the capacity that I am able!
Oh and I'm in the process of filing a formal complaint letter against the MS doctor who delayed my diagnosis through patient affairs at the hospital (I am going to send it to the cheif of medicine and have him review my file). At the time it was happening I was too weak to do anything but no I'm feeling better and ready to address my bad treatment by this doctor
Thank you all for the comments. I truly appreciate each of them. I think when I get over the initial shock, and hopefully that will be soon, I'll be better. Hope you all have a great 4th!
Hey! I have what I (un)affectionately call UWS - undiagnosed weirdness syndrome. I've been told by both my GP and my neuro that they are concerned it's MS but I've not been officially diagnosed yet. There's no telling when or if I might be.
As far as how I deal, I've sort of just not so much "given up" as resigned myself that this is my life now. I will know something someday maybe but until then I just manage my symptoms, talk it out when I can, suppress it when I don't feel like talking and pray.
My "prayers" aren't always "Our Heavenly Father..... In Your Name, Amen" types, tho. Sometimes, when I'm driving along, I'll just talk out loud. I know He is listening and caring but it's not an official "prayer" as one normally thinks of such things. I talk to God as if He is riding in the car with me, like you would a good Friend. (Sometimes, it's good He's not right there physically in the car with me as I tend to have a sailor's mouth in traffic, tho....)
It helps. Sometimes just getting it out helps. Just expressing it and acknowledging it to myself gets it "off my chest" so to speak.
This forum helps me alot, too. I don't post much but I read alot. It helps me knowing I'm not alone and I'm not crazy. I do try to post as and when I can and I should probably post more to give others the support I receive but I do try.
I agree with the others that I live in the moment. I try not to borrow trouble. I have enough of that so to take on more would be silly.
I don't know if I've helped any but you are welcome to PM me if you want to talk or vent or whatever.
Be well.
As far as how I deal, I've sort of just not so much "given up" as resigned myself that this is my life now. I will know something someday maybe but until then I just manage my symptoms, talk it out when I can, suppress it when I don't feel like talking and pray.
My "prayers" aren't always "Our Heavenly Father..... In Your Name, Amen" types, tho. Sometimes, when I'm driving along, I'll just talk out loud. I know He is listening and caring but it's not an official "prayer" as one normally thinks of such things. I talk to God as if He is riding in the car with me, like you would a good Friend. (Sometimes, it's good He's not right there physically in the car with me as I tend to have a sailor's mouth in traffic, tho....)
It helps. Sometimes just getting it out helps. Just expressing it and acknowledging it to myself gets it "off my chest" so to speak.
This forum helps me alot, too. I don't post much but I read alot. It helps me knowing I'm not alone and I'm not crazy. I do try to post as and when I can and I should probably post more to give others the support I receive but I do try.
I agree with the others that I live in the moment. I try not to borrow trouble. I have enough of that so to take on more would be silly.
I don't know if I've helped any but you are welcome to PM me if you want to talk or vent or whatever.
Be well.
NeedHelp-
I too am undx. I have had something wrong for over 25 years. Doctors have just blown me off so I just figured I was weird and just sort of thought, well I am still alive so I must be OK.
In the last 2 years things have gotten worse and episodes closer together. My left leg went weak and at first I thought it was a pinched nerve. So for 2 years that was what I told my husband.
Then when my left arm, face and vision changed this past year I began looking into other possibilities than a pinched nerve. I went through 3 months of tests alone, never telling my husband because i didn't want him to worry (sound familiar). he was having a hard time at work and I didn't want to add to his stress.
When the time came for my LP I knew I was going to have to tell him. So I sat him down and spilled it. I told him it may be MS and it may be a host of other things.
He was more upset with me for not trusting him to share what was going on than getting the news that it may be MS!!
It was so hard everyday knowing I was hiding something from him. Even though my intentions were to protect him, in the long run, I didn't. So now I am glad he knows and he is less affected by the MS idea than I thought (could be denial, but that is OK for now).
I deal with the not knowing by being proactive, learning all I can, and I pray a lot. I also (like Alex said) live in the moment as much as possible. No one, whether healthy or not, knows what the next moment will bring.
I also have my bad days where I can get a pretty good pity party going. Once that is over though, I go back to a healthier way of living.
Hold on to the good, let go of the bad, know that God is not surprised by what is happening and he has it under control, and live as honestly with yourself as you can...that is my goal.
I hope you have a joy filled day!!!
I too am undx. I have had something wrong for over 25 years. Doctors have just blown me off so I just figured I was weird and just sort of thought, well I am still alive so I must be OK.
In the last 2 years things have gotten worse and episodes closer together. My left leg went weak and at first I thought it was a pinched nerve. So for 2 years that was what I told my husband.
Then when my left arm, face and vision changed this past year I began looking into other possibilities than a pinched nerve. I went through 3 months of tests alone, never telling my husband because i didn't want him to worry (sound familiar). he was having a hard time at work and I didn't want to add to his stress.
When the time came for my LP I knew I was going to have to tell him. So I sat him down and spilled it. I told him it may be MS and it may be a host of other things.
He was more upset with me for not trusting him to share what was going on than getting the news that it may be MS!!
It was so hard everyday knowing I was hiding something from him. Even though my intentions were to protect him, in the long run, I didn't. So now I am glad he knows and he is less affected by the MS idea than I thought (could be denial, but that is OK for now).
I deal with the not knowing by being proactive, learning all I can, and I pray a lot. I also (like Alex said) live in the moment as much as possible. No one, whether healthy or not, knows what the next moment will bring.
I also have my bad days where I can get a pretty good pity party going. Once that is over though, I go back to a healthier way of living.
Hold on to the good, let go of the bad, know that God is not surprised by what is happening and he has it under control, and live as honestly with yourself as you can...that is my goal.
I hope you have a joy filled day!!!
I know this is very hard for you and you are scared. You probably feel very alone as well. Deployements are very hard even with out something like this.
My diagnosis period was really hard. I would say it was the hardest but there have been other hard times. I have gotten through them all.
I was looking at my deaf Service Dog Polly one day. She is JOY. she is almost always happy. She lives totally in the moment. She had bad times before us and sometimes they come out. She thinks we are scolding her because someone did in the past. I let her know she is good and she is happy again. I try to live like Polly or our new Service Dog in Training Grady. Being a puppy he lives in the second and is happy. They do not worry. I envy dogs.
She lives in the moment and does not know she is different. No human knows what will happen in the future. We with MS are told we have a disease but no Doctor knows how that disease will go in the individual.
When I am doing well I live in the moment for me and for my family. Projecting onto the future is hard for us and our loved ones. I am not saying hide your feelings. I am saying try to stay in the moment.
Hardly anything to awful happens in the moment. It is what I think will happen in the next moment which is usually scary and blown out of proportion.
The LP was not as scary as the weeks I freaked out before. I had to wait 6 weeks for the results. My husband was home but not with me the 2 years of testing. He just thought if we ignored it it would all go away. I went to many appointments alone.
I like what a friend said "Most things I worried about never happened, other things I never thought about did". For me worry is trying to control the future something I can't do.
I am not saying life is supposed to be all great. I just have to not project so many bad things onto the future.
The difference between us and other folks is we are told we may have or that we have something. They may have something and not know it.
You hang in there.
Alex
My diagnosis period was really hard. I would say it was the hardest but there have been other hard times. I have gotten through them all.
I was looking at my deaf Service Dog Polly one day. She is JOY. she is almost always happy. She lives totally in the moment. She had bad times before us and sometimes they come out. She thinks we are scolding her because someone did in the past. I let her know she is good and she is happy again. I try to live like Polly or our new Service Dog in Training Grady. Being a puppy he lives in the second and is happy. They do not worry. I envy dogs.
She lives in the moment and does not know she is different. No human knows what will happen in the future. We with MS are told we have a disease but no Doctor knows how that disease will go in the individual.
When I am doing well I live in the moment for me and for my family. Projecting onto the future is hard for us and our loved ones. I am not saying hide your feelings. I am saying try to stay in the moment.
Hardly anything to awful happens in the moment. It is what I think will happen in the next moment which is usually scary and blown out of proportion.
The LP was not as scary as the weeks I freaked out before. I had to wait 6 weeks for the results. My husband was home but not with me the 2 years of testing. He just thought if we ignored it it would all go away. I went to many appointments alone.
I like what a friend said "Most things I worried about never happened, other things I never thought about did". For me worry is trying to control the future something I can't do.
I am not saying life is supposed to be all great. I just have to not project so many bad things onto the future.
The difference between us and other folks is we are told we may have or that we have something. They may have something and not know it.
You hang in there.
Alex
Let me start by saying, I'm a limbolander so I understand some of your fear.
However, I know that thinking/obsessing/fearing/and/or anxiety isn't going to change any diagnosis I may or may not receive. It's just wasted energy. Which I don't have a lot to spare. ;)
IF you end up getting diagnosed with MS, then you've probably had it before you began thinking about non-stop.
I know waiting for test results can seem like eternity. I was like that in the beginning but when everything keeps coming back normal/negative, it can get even more frustrating. SO, I'm at the point where I'm accepting MS until they prove to me otherwise. I've had several docs say IT LOOKS LIKE MS but............
Take a very deep breath and know that thinking about it won't change the outcome on way or another. Try and have some fun, go to a movie, read a good book, and def laugh at yourself. Life is full of surprises! =)
Also, do what JJ suggested...read as much as you can on the subject, knowledge is power!!!
I wish you all the best
However, I know that thinking/obsessing/fearing/and/or anxiety isn't going to change any diagnosis I may or may not receive. It's just wasted energy. Which I don't have a lot to spare. ;)
IF you end up getting diagnosed with MS, then you've probably had it before you began thinking about non-stop.
I know waiting for test results can seem like eternity. I was like that in the beginning but when everything keeps coming back normal/negative, it can get even more frustrating. SO, I'm at the point where I'm accepting MS until they prove to me otherwise. I've had several docs say IT LOOKS LIKE MS but............
Take a very deep breath and know that thinking about it won't change the outcome on way or another. Try and have some fun, go to a movie, read a good book, and def laugh at yourself. Life is full of surprises! =)
Also, do what JJ suggested...read as much as you can on the subject, knowledge is power!!!
I wish you all the best
COMMUNITY LEADER
I'm not really sure how to answer that question, each person deals with fear in their own way. I personally dont get scared very much anyway but i've always been that way so i dont really know what I do or dont do, to give you clear advice.
I laugh a lot! Last night i walked into the wall then fell off the toilet, whats there to do but laugh at the stupid things that happen. I was more scared about my son being Autistic, the only way i could handle it was to learn everything I could and to observe everything he did, then try all the things that could help him.
I suppose i've done the same things for me, what i understand isn't as scary as when i didn't understand or have a name for it, so knowledge helps me deal with it, and laughing takes care of the rest, lol though i do have my moments.
Cheers........JJ
I laugh a lot! Last night i walked into the wall then fell off the toilet, whats there to do but laugh at the stupid things that happen. I was more scared about my son being Autistic, the only way i could handle it was to learn everything I could and to observe everything he did, then try all the things that could help him.
I suppose i've done the same things for me, what i understand isn't as scary as when i didn't understand or have a name for it, so knowledge helps me deal with it, and laughing takes care of the rest, lol though i do have my moments.
Cheers........JJ
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