dream77
08-28-2008, 12:20 PM
Hi,
I am waiting for the final verdict of the MRI report too..
My neuro is convinced I have MS and I am too with the stuff I've been through the last year though spinal taps and MRIs done 6-7 months ago but alot has happened since then and am waiting on MRI results which we expect will be conclusive.
I am curious to know about the following :
MRI results :-
I read they are 98% of the time conclusive about whether or not you have MS.
Is this correct since I also read that there are too many people which have MS with no positive MRIs. It just seems hard to believe that all those people are in the 2% range..
What are your experiences ?
Is it worth for me to get a second spinal tap whether or not the MRI is conclusive ?
- I read about drugs : infernons and immuno supporessants.
I would be happy to read experiences with these and how normal could your lives be while living with this disease and using these drugs.
What can and cannot you do ?Is it ethical to continue working and not tell your boss about this situation ?
Thank
I am waiting for the final verdict of the MRI report too..
My neuro is convinced I have MS and I am too with the stuff I've been through the last year though spinal taps and MRIs done 6-7 months ago but alot has happened since then and am waiting on MRI results which we expect will be conclusive.
I am curious to know about the following :
MRI results :-
I read they are 98% of the time conclusive about whether or not you have MS.
Is this correct since I also read that there are too many people which have MS with no positive MRIs. It just seems hard to believe that all those people are in the 2% range..
What are your experiences ?
Is it worth for me to get a second spinal tap whether or not the MRI is conclusive ?
- I read about drugs : infernons and immuno supporessants.
I would be happy to read experiences with these and how normal could your lives be while living with this disease and using these drugs.
What can and cannot you do ?Is it ethical to continue working and not tell your boss about this situation ?
Thank
Sponsor
Bearygood
08-28-2008, 12:29 PM
Any statistic you read about being dxed with MS has only to do with what it takes to get an MS dx. There are unfortunately a lot of people who suspect they have MS for a very long time but cannot be dxed because they don't meet the McDonald criteria. We have seen people in this situation who eventually come to be dxed YEARS later. It is very possible to have MS but to not be able to get a dx until something shows. So (and this is if your statistic is correct) it would probably be more accurate to say that "x" percentage of people who have been dxed have positive MRIs.
The CRABs (Copaxone, Rebif, Avonex and Betaseron) are immunomodulators, not suppressants.
As far as working and disclosure, you are not obligated to disclose. It's a very personal thing and before making a decision, I would advise you to consider any possible ramifications (either way) now or down the line.
The CRABs (Copaxone, Rebif, Avonex and Betaseron) are immunomodulators, not suppressants.
As far as working and disclosure, you are not obligated to disclose. It's a very personal thing and before making a decision, I would advise you to consider any possible ramifications (either way) now or down the line.
MSNik
08-28-2008, 10:28 PM
Hi dream- just to add to the good information that Bearygood gave you..
The CRABS - only Rebif, Avonex and Betaseron are Interferons....and Copaxone is not, and is a synthetic drug which works differently.
It is not only ethical NOT to tell your boss, but in my case I do NOT recommend telling anyone at work. Its horrible, but things change instantly. You have the advantage, you have not only US but educated yourself on MS and what it can and might and more importantly MIGHT NOT do to you. Others will not go that far. Should you get a dx, you are going to hear "i know someone with MS and he/she is on...." or "I know someone who has MS and they .....' everyone all the sudden will have an answer for what you should do and how to live your life and what will happen to you. Dont be suprised if you hear that Montel says...or Terri Garr wrote.....its unbelievable.
My point is that it can go so many ways....even suspecting you have MS, you are really not yet prepared for hearing you have it...the inital shock can be overwhelming...it does pass, and this board is one of the absolute best sources of support and info you can find. (saved me 2 years ago)....you can also researach threads on Disclosure and MS within healthboards, we have had many MANY topics of whether to tell at work or not...there have been some, who have goten lots of support..and just as many where they regret it.
As far as being on a drug. Im on Rebif. LOVE IT. In two years have had no real new problems...and I started with over 50 lesions on my brain MRI. It does, like all the other drugs, take some getting used to...and yes, there are side effects in the beginning which can make you feel awful, however Rebif seems to have the least side effects of the Interferons- Copaxone has even less side effects overall....but there is much more to understand when making those choices...you can read up by searching on any one of the drug names, also here on Healthboards and read about different experiences...not every drug works well for everyone and you always have the ability to switch if one isnt working as well as your doc would like.
Good luck with the MRis....do not bother with a second spinal tap, unless they missed testing for something the first time...they dont usually change. MRIs, DO change and will change every few weeks! So thats going to be allot more telling...keep us posted.
Nikki
The CRABS - only Rebif, Avonex and Betaseron are Interferons....and Copaxone is not, and is a synthetic drug which works differently.
It is not only ethical NOT to tell your boss, but in my case I do NOT recommend telling anyone at work. Its horrible, but things change instantly. You have the advantage, you have not only US but educated yourself on MS and what it can and might and more importantly MIGHT NOT do to you. Others will not go that far. Should you get a dx, you are going to hear "i know someone with MS and he/she is on...." or "I know someone who has MS and they .....' everyone all the sudden will have an answer for what you should do and how to live your life and what will happen to you. Dont be suprised if you hear that Montel says...or Terri Garr wrote.....its unbelievable.
My point is that it can go so many ways....even suspecting you have MS, you are really not yet prepared for hearing you have it...the inital shock can be overwhelming...it does pass, and this board is one of the absolute best sources of support and info you can find. (saved me 2 years ago)....you can also researach threads on Disclosure and MS within healthboards, we have had many MANY topics of whether to tell at work or not...there have been some, who have goten lots of support..and just as many where they regret it.
As far as being on a drug. Im on Rebif. LOVE IT. In two years have had no real new problems...and I started with over 50 lesions on my brain MRI. It does, like all the other drugs, take some getting used to...and yes, there are side effects in the beginning which can make you feel awful, however Rebif seems to have the least side effects of the Interferons- Copaxone has even less side effects overall....but there is much more to understand when making those choices...you can read up by searching on any one of the drug names, also here on Healthboards and read about different experiences...not every drug works well for everyone and you always have the ability to switch if one isnt working as well as your doc would like.
Good luck with the MRis....do not bother with a second spinal tap, unless they missed testing for something the first time...they dont usually change. MRIs, DO change and will change every few weeks! So thats going to be allot more telling...keep us posted.
Nikki
dream77
08-29-2008, 11:09 AM
Hi..
My neuro called today and said my MRI was normal..
I am very releived but am confused as to why I get the symptoms I get.. off and on .. some really bad spell and some not so bad and some new spells.. Nothing so far has been debilitating (I am grateful to God) but there is something going on which I don't understand . no one understands.
I am also going to an infectious disease doctor to see if he finds something related to the incidentn lymph gland swelling .. lump formation in the breast/ovary and all in the last 5 months.. but there don't seem to be any bugs that cause neurological problems .. It is not possible for me to get STDs and those are the only ones that seem to have a neuro impact and that too quite drastically... I am again confused though relieved to some extents though I am aware that many many MRIs cant catch MS ..
My neuro called today and said my MRI was normal..
I am very releived but am confused as to why I get the symptoms I get.. off and on .. some really bad spell and some not so bad and some new spells.. Nothing so far has been debilitating (I am grateful to God) but there is something going on which I don't understand . no one understands.
I am also going to an infectious disease doctor to see if he finds something related to the incidentn lymph gland swelling .. lump formation in the breast/ovary and all in the last 5 months.. but there don't seem to be any bugs that cause neurological problems .. It is not possible for me to get STDs and those are the only ones that seem to have a neuro impact and that too quite drastically... I am again confused though relieved to some extents though I am aware that many many MRIs cant catch MS ..
Tasia W
08-29-2008, 01:05 PM
Hi Dream
Have you been checked for lyme disease? Also, was your MRI done with and without contrast because that can make a difference?
As far as disclosure. I had my rights taken away from me from a co-worker who found out I had MS and she informed my boss. Luckily he handled the situation superbly and so far my job has not been affected. This is not the case with everyone and discloser is a choice and only one that you can make. Personally, I would rather no one at work knew.
Good luck to you Dream
Tasia
Have you been checked for lyme disease? Also, was your MRI done with and without contrast because that can make a difference?
As far as disclosure. I had my rights taken away from me from a co-worker who found out I had MS and she informed my boss. Luckily he handled the situation superbly and so far my job has not been affected. This is not the case with everyone and discloser is a choice and only one that you can make. Personally, I would rather no one at work knew.
Good luck to you Dream
Tasia