brclrk80
08-31-2008, 01:40 PM
Alright, so it's a lonely Sunday and I am stuck here by myself. I've been thinking about some things and I would like some input if possible.
I have been diagnosed since 8/13/08. My neurologist, who everyone says is the best in the area when it comes to MS, has YET to identify what type of MS I have; all he will say is it is acute. I have been experiencing a gradual increase in symptoms and severity of symptoms since mid-June of this year. I have had two sets of 3 days of 1000MG IV Solu-Medrol. I am also on 600 MG of Neurontin (which is a low dose) and will begin Rebif next week.
I am a little discouraged since none of these things are helping in the slightest, yet he keeps saying that I should see some relief soon. Well soon has come and gone and it is nowhere to be seen. I pride myself on being a strong person and not letting these things get to me, but there is only so much a person can take. No, I am not giving up and I am not letting this get the best of me, I just want to see a little relief; God willing.
So all of you out there, with all of your experience with this disease and its unpredictability, I would like to know something. When you had your first major onset of symptoms, how long did they last? If you had the steroids done, did you respond, and how quickly?
Thank you all for your support, not only for me, but everyone else too.
I have been diagnosed since 8/13/08. My neurologist, who everyone says is the best in the area when it comes to MS, has YET to identify what type of MS I have; all he will say is it is acute. I have been experiencing a gradual increase in symptoms and severity of symptoms since mid-June of this year. I have had two sets of 3 days of 1000MG IV Solu-Medrol. I am also on 600 MG of Neurontin (which is a low dose) and will begin Rebif next week.
I am a little discouraged since none of these things are helping in the slightest, yet he keeps saying that I should see some relief soon. Well soon has come and gone and it is nowhere to be seen. I pride myself on being a strong person and not letting these things get to me, but there is only so much a person can take. No, I am not giving up and I am not letting this get the best of me, I just want to see a little relief; God willing.
So all of you out there, with all of your experience with this disease and its unpredictability, I would like to know something. When you had your first major onset of symptoms, how long did they last? If you had the steroids done, did you respond, and how quickly?
Thank you all for your support, not only for me, but everyone else too.
Sponsor
MSNik
08-31-2008, 03:02 PM
Hi there. Im sorry you are having a down day. You are asking good questions though. Youve only been dx for 2 weeks- this is an overwhelming and confusing time in your life..it will get easier and you wil cope better. I think that once you start taking control of your disease, with Rebif- youll feel better, I know I did.
Since you are starting Rebif we can tell you that your MS is relapsing/remitting. None of the injectables are prescribed for any other form of MS...so there is your answer on that.
My first onset of symtoms, which led to my dx were in August of 06. My original symtom was waking up with a numb, tingling hand which I thought was carpal tunnel and then, a pinched nerve...neither were found and MS was discovered. 2 years later I STILL HAVE A NUMB TINGLING HAND AND FINGERS and have learned to live with it...its worse in the summer and the heat/humidity..but it hurts all the time and never lets me forget it is there. For many people, their original symtoms go away and never come back. My nerve damage was too extensive.
I also had a round of IVSM (solumedrol) and it did NOT help...yet, a few months later, I had a bout of optical Neuritis, was treated again with IVSM and it did help. 3 days is a very short treatment. BOth times I was given 5 days...that seems to be standard with most neuros...anyway, to answer your question IV solumeddrol will only help some people, some of the time and the more you do it, the less it will help..its not a good thing to be dependent on.
Rebif, on the other hand, will NOT help the orignal problems you are having, but should stop new symtoms, new lesions and new activity on the MRI...in my case, its been wonderful- but I wont lie to you. The first few months of side effects were bad- and I had the one relpase with the optical neuritis. I was positive that it wasnt working for me...by month 5, I had no more side effects at all, and have not had a relapse or new activity either...I love Rebif!
When you start it, youll have lots of questions, shout out to me if I can be of any help...but remember that it takes 6 full months to build up in your blood stream, and during that time, it can take the wind out of your sails, This is heavy duty medication, but honestly, it gets so much better once it starts to work. Your energy level returns, your fatigue is not as noticable, you overall feel better, you just have to remember that when getting thru the bad stuff in the beginning! I have lots of hints and tips for you...but wait until you have seen the MSlifelines nurse, and then ask.
For the record, not many people get relief from Neuronitin- some do, many do not..it seems to help things like toungue and mouth issues alot better then leg or hand/arm issues..I stopped it when I got to 600 mgs 3 times a day because all it did was put me to sleep....it gets easier, promise!
take care of yourself...you are doing all the right things, and Rebif will make a difference in a few months.
Hugs
Nikki
Since you are starting Rebif we can tell you that your MS is relapsing/remitting. None of the injectables are prescribed for any other form of MS...so there is your answer on that.
My first onset of symtoms, which led to my dx were in August of 06. My original symtom was waking up with a numb, tingling hand which I thought was carpal tunnel and then, a pinched nerve...neither were found and MS was discovered. 2 years later I STILL HAVE A NUMB TINGLING HAND AND FINGERS and have learned to live with it...its worse in the summer and the heat/humidity..but it hurts all the time and never lets me forget it is there. For many people, their original symtoms go away and never come back. My nerve damage was too extensive.
I also had a round of IVSM (solumedrol) and it did NOT help...yet, a few months later, I had a bout of optical Neuritis, was treated again with IVSM and it did help. 3 days is a very short treatment. BOth times I was given 5 days...that seems to be standard with most neuros...anyway, to answer your question IV solumeddrol will only help some people, some of the time and the more you do it, the less it will help..its not a good thing to be dependent on.
Rebif, on the other hand, will NOT help the orignal problems you are having, but should stop new symtoms, new lesions and new activity on the MRI...in my case, its been wonderful- but I wont lie to you. The first few months of side effects were bad- and I had the one relpase with the optical neuritis. I was positive that it wasnt working for me...by month 5, I had no more side effects at all, and have not had a relapse or new activity either...I love Rebif!
When you start it, youll have lots of questions, shout out to me if I can be of any help...but remember that it takes 6 full months to build up in your blood stream, and during that time, it can take the wind out of your sails, This is heavy duty medication, but honestly, it gets so much better once it starts to work. Your energy level returns, your fatigue is not as noticable, you overall feel better, you just have to remember that when getting thru the bad stuff in the beginning! I have lots of hints and tips for you...but wait until you have seen the MSlifelines nurse, and then ask.
For the record, not many people get relief from Neuronitin- some do, many do not..it seems to help things like toungue and mouth issues alot better then leg or hand/arm issues..I stopped it when I got to 600 mgs 3 times a day because all it did was put me to sleep....it gets easier, promise!
take care of yourself...you are doing all the right things, and Rebif will make a difference in a few months.
Hugs
Nikki
Nenu
08-31-2008, 04:37 PM
It took at least a week after my last dose of steroids before I began to feel relief.
A lot of symptom management is trial and error it seems. For example, Neurontin has worked for so many people. For me, it didn't help 1 bit, and the side effects I experienced from it were horrible.
Meanwhile, Amitriptyline has helped with the type of pain I experience more so than Neurontin ever did. You'll find just as many who say Amitriptyline has not helped them at all.
There are a lot of options for you to explore, so if you don't find that Neurontin or whatever other drug you try helps, speak with your neuro about other options. Keep in mind that Neurontin itself can take a while to become effective as well.
A lot of symptom management is trial and error it seems. For example, Neurontin has worked for so many people. For me, it didn't help 1 bit, and the side effects I experienced from it were horrible.
Meanwhile, Amitriptyline has helped with the type of pain I experience more so than Neurontin ever did. You'll find just as many who say Amitriptyline has not helped them at all.
There are a lot of options for you to explore, so if you don't find that Neurontin or whatever other drug you try helps, speak with your neuro about other options. Keep in mind that Neurontin itself can take a while to become effective as well.
sunshine149
08-31-2008, 06:36 PM
In 1997, I developed ON in the left eye and then numbness from the pelvis down and my left knee was buckling. I was hospitalized for 5 days, during that time I was given IV steroids and while on them, symptoms abated but when I came home from the hospital, I felt like a truck had run me over and this lasted several weeks. All-in-all, it was about 4 months before I felt "normal." All symptoms did do away. In the past 11 years, this is still my worst flare-up by far. The first and the worst-
I was pretty miserable during that time, not knowing what was going to happen but I'm still here and things are going pretty well. I am also a Type I diabetic so I will not, for health reasons, agree to any more IV steroid treatments. I have also tried neurontin and it did nothing for me but give my horrible side effects.
My worst complaint is fatigue. I am not on any conventional drugs to treat MS, instead I use diet and acupuncture and Chinese herbal therapies.
Welcome to the board and I'm sorry to hear about your diagnosis AND especially that the meds aren't helping... Keep us posted-
I was pretty miserable during that time, not knowing what was going to happen but I'm still here and things are going pretty well. I am also a Type I diabetic so I will not, for health reasons, agree to any more IV steroid treatments. I have also tried neurontin and it did nothing for me but give my horrible side effects.
My worst complaint is fatigue. I am not on any conventional drugs to treat MS, instead I use diet and acupuncture and Chinese herbal therapies.
Welcome to the board and I'm sorry to hear about your diagnosis AND especially that the meds aren't helping... Keep us posted-
Bearygood
08-31-2008, 06:44 PM
brclrk80, I'm guessing that your doctor will not commit to what type of MS he thinks you have because enough time hasn't passed to see how well you'll recover from this flare. It sounds like a bad one -- I'm so sorry and also sorry that the steroids haven't offered more relief so far.
I know you feel discouraged but you are SOOO recently diagnosed. It takes a while to see what's going to be and even get used to being dxed. I can tell you that while I was not in terrible shape when I was dxed (what turned out to be ON is what brought me to the doctor), I DID have other sx -- just nothing I couldn't (and didn't) dismiss.
In the 18 months that I have been dxed, my sx are still intermittent. Some days I don't even have a reminder (and I've had both new and old sx visit me during that time). But in the original stretch of time, I'd say that even though I was relatively mild, it took me probably around 9 months to realize that some of my original sx had ceased.
Please try to chin up and try to believe that you WILL improve. Honest, time has been very short. BIG (((HUG))!! :angel:
I know you feel discouraged but you are SOOO recently diagnosed. It takes a while to see what's going to be and even get used to being dxed. I can tell you that while I was not in terrible shape when I was dxed (what turned out to be ON is what brought me to the doctor), I DID have other sx -- just nothing I couldn't (and didn't) dismiss.
In the 18 months that I have been dxed, my sx are still intermittent. Some days I don't even have a reminder (and I've had both new and old sx visit me during that time). But in the original stretch of time, I'd say that even though I was relatively mild, it took me probably around 9 months to realize that some of my original sx had ceased.
Please try to chin up and try to believe that you WILL improve. Honest, time has been very short. BIG (((HUG))!! :angel:
MSNik
08-31-2008, 07:37 PM
still say R/R MS, because Rebif is not approved for any other form of MS and if your doc has you starting on it in two weeks, thats a pretty significant sign that he is also thinking R/R...but I could be wrong-
Youve gotten some good advice here- chin up and stay strong! My favorite MS saying is, this too, will pass!
Nikki
Youve gotten some good advice here- chin up and stay strong! My favorite MS saying is, this too, will pass!
Nikki
MSJayhawk
08-31-2008, 08:20 PM
You have received plenty of advice. My only advice is to ask many questions of your doctor. Have your doctor explain every minute detail regarding any and all questions you might have regardless of how insignificant you might think the question is.
Eons ago (the horse and buggy days of MS), MS was just MS- some bad, some worse, and some not too bad. Nowadays with 4 maintypes generally agreed upon, questions abound as to what type you have. If you have MS, regard this as your diagnosis and then ask your doctor how to handle it.
Next month will be 26 years since my diagnosis (30 years since the first symptom I can remember). I have been without meds all these years. I treat myself with rest when I need it and avoid triggers for my flare-ups. I am now in a state of no relief and live daily with my MS. Stay positive because MS is only a "monster" if you allow it. I prefer to give no room for MS in my life. No, it is not 100% successful, but I know that if "I let go and let God", I do just fine!
Eons ago (the horse and buggy days of MS), MS was just MS- some bad, some worse, and some not too bad. Nowadays with 4 maintypes generally agreed upon, questions abound as to what type you have. If you have MS, regard this as your diagnosis and then ask your doctor how to handle it.
Next month will be 26 years since my diagnosis (30 years since the first symptom I can remember). I have been without meds all these years. I treat myself with rest when I need it and avoid triggers for my flare-ups. I am now in a state of no relief and live daily with my MS. Stay positive because MS is only a "monster" if you allow it. I prefer to give no room for MS in my life. No, it is not 100% successful, but I know that if "I let go and let God", I do just fine!
brclrk80
09-01-2008, 10:41 AM
First off, all I can say is wow, every post was brilliant. I never expected the kind responses you all gave. I really, really appreciate the thought and experience put into your replies. I honestly cannot say enough about the support everyone has given. Thank you.
I am new, especially for those of you dealing with this disease for years. There is so much information out there, I don't see how any one person could ever know enough about it. I have found a lot of good sites recommended to me by my neurologist, they have all been helpful but somewhat lacking. A lot of sites miss the human element that only a site like this can give. Information sites can define to me what I am feeling, what I will feel or could feel, but only in this type of environment can I learn what we feel.
The problem is, and I hope I am correct when I say this, since I am newly diagnosed, I don't have experience. I don't know how what I am dealing with now will correlate with how I will feel then. For many of you responding, have you gone though my then. If that makes sense, thank you for decrypting my thoughts; you do a better job than I.
I may sound bad when I say this, and in fact it may be and I will probably change my mind, but I am done with the steroids. They don't help and the side effects are too much for me to handle again. If it is RRMS, once it remits then relapses again, I will think about having it done once more. </steroids>
I could honestly go on and on here, and I will spare you the boredom so I will finish on one last point. I gather from your experiences, and I already know anyway, that this disease is as unpredictable as death. I do have faith and I do, or try to have a positive attitude and outlook. As my doctor told me when he first suspected MS; "20 years ago this disease was a crappy diagnosis with crappy treatments, today its a crappy diagnosis with better treatments". I look forward to the crappy diagnosis and better treatments because life has been a lot more interesting to say the least. I was getting pretty bored of being normal anyway. Thanks again.
I am new, especially for those of you dealing with this disease for years. There is so much information out there, I don't see how any one person could ever know enough about it. I have found a lot of good sites recommended to me by my neurologist, they have all been helpful but somewhat lacking. A lot of sites miss the human element that only a site like this can give. Information sites can define to me what I am feeling, what I will feel or could feel, but only in this type of environment can I learn what we feel.
The problem is, and I hope I am correct when I say this, since I am newly diagnosed, I don't have experience. I don't know how what I am dealing with now will correlate with how I will feel then. For many of you responding, have you gone though my then. If that makes sense, thank you for decrypting my thoughts; you do a better job than I.
I may sound bad when I say this, and in fact it may be and I will probably change my mind, but I am done with the steroids. They don't help and the side effects are too much for me to handle again. If it is RRMS, once it remits then relapses again, I will think about having it done once more. </steroids>
I could honestly go on and on here, and I will spare you the boredom so I will finish on one last point. I gather from your experiences, and I already know anyway, that this disease is as unpredictable as death. I do have faith and I do, or try to have a positive attitude and outlook. As my doctor told me when he first suspected MS; "20 years ago this disease was a crappy diagnosis with crappy treatments, today its a crappy diagnosis with better treatments". I look forward to the crappy diagnosis and better treatments because life has been a lot more interesting to say the least. I was getting pretty bored of being normal anyway. Thanks again.
Nenu
09-01-2008, 01:55 PM
I've only been diagnosed since March of this year, but I have learned so much from interacting daily with folks who have had MS for much longer than I have. I still learn stuff daily. I'm sure they too still learn stuff daily. It's a never ending process of learning, absorbing, applying (where applicable).
As my doctor told me when he first suspected MS; "20 years ago this disease was a crappy diagnosis with crappy treatments, today its a crappy diagnosis with better treatments". I look forward to the crappy diagnosis and better treatments because life has been a lot more interesting to say the least. I was getting pretty bored of being normal anyway. Thanks again.
My neurologist told me, "This is a good time to have MS". I must have looked at him strangely, but he went on to explain that naturally, no one would wish MS on someone, but there are so many treatment options now available, as well as the numerous trials currently underway, and research into the disease. The more I think about it, the more I agree.
I was getting bored of being 'normal' too haha! In all honesty, I look at what positives MS has given to me. I now sleep 8 hours, unheard of before. I eat very well, and I used to eat horribly. I take care of my body, and I am more conscious of what my body's telling me daily. I also went from having no health care in the form of doctors to having doctors interested in treating me.
I don't think I'm in a bad position at all. In fact, I think I'm in a better position than a lot of people around me :)
As my doctor told me when he first suspected MS; "20 years ago this disease was a crappy diagnosis with crappy treatments, today its a crappy diagnosis with better treatments". I look forward to the crappy diagnosis and better treatments because life has been a lot more interesting to say the least. I was getting pretty bored of being normal anyway. Thanks again.
My neurologist told me, "This is a good time to have MS". I must have looked at him strangely, but he went on to explain that naturally, no one would wish MS on someone, but there are so many treatment options now available, as well as the numerous trials currently underway, and research into the disease. The more I think about it, the more I agree.
I was getting bored of being 'normal' too haha! In all honesty, I look at what positives MS has given to me. I now sleep 8 hours, unheard of before. I eat very well, and I used to eat horribly. I take care of my body, and I am more conscious of what my body's telling me daily. I also went from having no health care in the form of doctors to having doctors interested in treating me.
I don't think I'm in a bad position at all. In fact, I think I'm in a better position than a lot of people around me :)
brclrk80
09-01-2008, 02:12 PM
Nenu, the nurse who administered my IV treatments has a daughter with MS and is involved with some company or organization who is researching some type of stem cell or something similar that could potentially "cure" the disease. She said that within my lifetime the chances of seeing a cure is pretty good. I wish I could remember more of what she said, but the stuff kinda puts me in another place.
I fully understand what you mean by the positives of learning more about your body, nutrition, health care, etc. My wife thinks I am crazy when I say things like that. Thanks and take care.
I fully understand what you mean by the positives of learning more about your body, nutrition, health care, etc. My wife thinks I am crazy when I say things like that. Thanks and take care.
april1848
09-01-2008, 03:06 PM
I agree, Nenu! Before my dx I was at a job I hated and not taking care of myself as well as I should have. MS has changed my perspective on everything. I switched jobs, as you know, because I realized that it wasn't worth it to be miserable everyday--that's just a small part of it. The small blessings in life are much easier for me to see now, and the people in my life who I love and love me back unconditionally are much more precious to me now. It will be a year of MS on 9/10, and I can honestly say that my life is so much better now than it was then. I am happier, and it's easier for me to be happy. I have accepted MS in my life, although I still struggle with the limitations, and I still get depressed sometimes. It amazes me, now that I have hindsight, that I was more depressed before my dx than I am now, knowing I have this crummy disease.
Brclrk, I have gone to other places on the web and I agree that those places are missing the "human element" too. I am not a robot or machine dealing with a chronic disease, I'm a person with feelings and fear dealing with it. It's much easier and helpful for me to learn here. There is so much to learn, and I'm sure the future will bring us some good news. The good thing about MS is that (in my opinion) it's fascinating, and it's bound to attract some brilliant medical minds to our cause. I like to tell people that if I had to have a disease, I'm glad it's an interesting one! I'm not just saying that either, I believe it. MS continues to fascinate me, even when I'm feeling my worst!
RE: Steroids, I'm with you on that one. They did such a number on me that I am very hesitant to use them again. They wanted me to do another round in February but I refused. I'm glad too, because the symptoms went away in their own time. I will certainly use them again if my symptoms are very bad and not manageable, but it's a last resort thing for me.
I'm glad you're part of our family now. Have a nice Labor Day!
Brclrk, I have gone to other places on the web and I agree that those places are missing the "human element" too. I am not a robot or machine dealing with a chronic disease, I'm a person with feelings and fear dealing with it. It's much easier and helpful for me to learn here. There is so much to learn, and I'm sure the future will bring us some good news. The good thing about MS is that (in my opinion) it's fascinating, and it's bound to attract some brilliant medical minds to our cause. I like to tell people that if I had to have a disease, I'm glad it's an interesting one! I'm not just saying that either, I believe it. MS continues to fascinate me, even when I'm feeling my worst!
RE: Steroids, I'm with you on that one. They did such a number on me that I am very hesitant to use them again. They wanted me to do another round in February but I refused. I'm glad too, because the symptoms went away in their own time. I will certainly use them again if my symptoms are very bad and not manageable, but it's a last resort thing for me.
I'm glad you're part of our family now. Have a nice Labor Day!
Nenu
09-01-2008, 04:11 PM
The small blessings in life are much easier for me to see now, and the people in my life who I love and love me back unconditionally are much more precious to me now.
This is an excellent point April. I too feel I have become more connected with my family since being diagnosed. Previously, it was rare for me to even email my parents. Sounds horrible, but that's the type of personality I was. Very in my own 'universe', very independent. Disconnected from those I should have been communicating with more.
I live 2 Provinces away from my parents (however, they have indicated that upon retirement they're considering moving to the East Coast). I've kept myself busy with University and working after graduation. It wasn't until my crash and burn in Jan/February of 2007 that I began 'reconnecting' with those important in my life. Now, I don't go a day without emailing my parents. Even if it's about the most boring subjects imaginable.
I do have great parents. They don't hold it against me that I was so distant for many years. They're just happy now that I have found out what was so wrong for years before, and that I'm taking the necessary steps to better my life at this time. They still tell me every day how 'proud' they are of me. While it can be hard to see sometimes how I can make anyone 'proud', they reassure me all the time.
This is an excellent point April. I too feel I have become more connected with my family since being diagnosed. Previously, it was rare for me to even email my parents. Sounds horrible, but that's the type of personality I was. Very in my own 'universe', very independent. Disconnected from those I should have been communicating with more.
I live 2 Provinces away from my parents (however, they have indicated that upon retirement they're considering moving to the East Coast). I've kept myself busy with University and working after graduation. It wasn't until my crash and burn in Jan/February of 2007 that I began 'reconnecting' with those important in my life. Now, I don't go a day without emailing my parents. Even if it's about the most boring subjects imaginable.
I do have great parents. They don't hold it against me that I was so distant for many years. They're just happy now that I have found out what was so wrong for years before, and that I'm taking the necessary steps to better my life at this time. They still tell me every day how 'proud' they are of me. While it can be hard to see sometimes how I can make anyone 'proud', they reassure me all the time.
Bearygood
09-01-2008, 09:08 PM
brclrk80, I like your doctor's quote! A doctor who will tell it like it really is is okay in my book! The awareness thing is definitely true too.
You sound like you're just about on track mentally -- now we just have to get you feeling better physically! :) I really hope things take a turn for the better soon. :angel:
You sound like you're just about on track mentally -- now we just have to get you feeling better physically! :) I really hope things take a turn for the better soon. :angel:
brclrk80
09-02-2008, 10:11 AM
brclrk80, I like your doctor's quote! A doctor who will tell it like it really is is okay in my book! The awareness thing is definitely true too.
You sound like you're just about on track mentally -- now we just have to get you feeling better physically! :) I really hope things take a turn for the better soon. :angel:
We are working on it.
When I learned of the diagnosis I had a short period where I figured nothing mattered anymore. Its strange since I have NEVER had this attitude before. I was just so overwhelmed from finishing college, having three MRIs, multiple blood tests, spinal tap, doctor/neuro visits, etc. I went from having a relatively normal life with the prospect of finding a decent job fresh out of school to having all of this.
Thanks to all of your support I never feel alone with this. I personally do not know anyone with this disease that I can talk with. Without this group I would be very lost.
You sound like you're just about on track mentally -- now we just have to get you feeling better physically! :) I really hope things take a turn for the better soon. :angel:
We are working on it.
When I learned of the diagnosis I had a short period where I figured nothing mattered anymore. Its strange since I have NEVER had this attitude before. I was just so overwhelmed from finishing college, having three MRIs, multiple blood tests, spinal tap, doctor/neuro visits, etc. I went from having a relatively normal life with the prospect of finding a decent job fresh out of school to having all of this.
Thanks to all of your support I never feel alone with this. I personally do not know anyone with this disease that I can talk with. Without this group I would be very lost.
mike987
09-02-2008, 11:24 AM
April1848:
In your last post, you mentioned that you have switched jobs since your diagnosis. I have a practical question about this (and if this is digging too deep, and you don't wish to answer, I completely understand). How did you handle issues with health insurance? Did you have to tell the new insurance carrier and/or your new employer about your pre-existing condition?
In your last post, you mentioned that you have switched jobs since your diagnosis. I have a practical question about this (and if this is digging too deep, and you don't wish to answer, I completely understand). How did you handle issues with health insurance? Did you have to tell the new insurance carrier and/or your new employer about your pre-existing condition?
april1848
09-02-2008, 06:09 PM
To make a long story short, I left my old job because my boss was violating the ADA every second, and he even told our entire board of directors about it. I quit one day, without planning it. There were 6 weeks between my old job and my new one, so in the interim I had to pay for COBRA. If you don't do that, my new insurance company could have pulled pre-existing crap....as long as you have COBRA in between, they can't do that.
My initial plan at the new job was to not tell anyone, but I did tell the HR person for insurance reasons. I was a little worried, but she never told anyone. It's a long story, but I lucked out; it turns out my new boss already knew I had MS before I was hired, because my old evil boss had told him! So at my work, it's not a problem. All the important people--my bosses, know. They've offered me every kind of support, and they are even picking up $1000.00 of my deductible. They are wonderful people.
My initial plan at the new job was to not tell anyone, but I did tell the HR person for insurance reasons. I was a little worried, but she never told anyone. It's a long story, but I lucked out; it turns out my new boss already knew I had MS before I was hired, because my old evil boss had told him! So at my work, it's not a problem. All the important people--my bosses, know. They've offered me every kind of support, and they are even picking up $1000.00 of my deductible. They are wonderful people.
mike987
09-02-2008, 08:38 PM
Thanks for the reply. It's great everything worked out at your new job.
april1848
09-02-2008, 08:42 PM
It was a bummer paying for COBRA, but it was worth not worrying about whether or not my Avonex would be covered!
By the way, as a former HR person, you don't have to tell them about your MS. The insurance company will want to know, but you can communicate that directly to them rather than filling out a form with your HR department. As long as there is no interruption (hence the COBRA) in your medical coverage, they will pay for what you need, per their policy. The insurance company is not allowed to tell your company that you have MS.
By the way, as a former HR person, you don't have to tell them about your MS. The insurance company will want to know, but you can communicate that directly to them rather than filling out a form with your HR department. As long as there is no interruption (hence the COBRA) in your medical coverage, they will pay for what you need, per their policy. The insurance company is not allowed to tell your company that you have MS.
mike987
09-03-2008, 10:35 AM
It seems to me, though, that if you are thinking about switching jobs, you would want to make absolutely sure that the new health insurance carrier is going to cover you. And I would think the only way to do this is to go through the HR department. I guess you could try to contact the insurance company directly, but it seems this would be difficult unless you were an actual employee.
april1848
09-03-2008, 07:54 PM
I hadn't even thought about my new insurance not covering MS stuff, as long as I had COBRA. I'm glad it does though!