Arrrrrrrrggggghhhhhh! - Back in limbo - After all......
21 Oct 2013 at 1:23PM
Well i'm well and truly confused now. Just as I had come to
terms with accepting the news that I had MS and the emotional c r a p
which goes with it. This happens.
I saw the Neuro a few weeks back now, where he said (or at least the wife and I thought he said) that I did have MS. He said that a lumbar puncture which is used to diagnose MS is not required, as my treatment of the disease would not change with having a lumbar puncture. The outcome would be the same.
Anyway, a letter dropped through the letterbox on Saturday morning which had been sent to my doctor and I had been copied in.
The letter states that "after studying the MRI head and c spine images, it is agreed that the appearances are sugggestive of demyelation. No further investigations are requested at this current time."
A letter has been sent to the local MS nurses asking them to contact me as I have now been given a "new" diagnosis of "likely Multiple Sclerosis" and their input would be appreciated.
Is this normal? Should I have told the DVLA and my employer that I have "likely Multiple Sclerosis" and not official Multiple Sclerosis? like I did tell them, much to my annoyance. I wanted to keep this confidential and now I have put myself into a very awkward position at work regarding my ability to work.
What happens now? I guess if i'm lucky I get to see a nurse, but then what? Do I have to wait untill I have another major relapse and I lose control of a limb or bowel or something.
I'm already four weeks into an episode where I am having severe muscle cramps in my right leg and walking is becoming more and more troublesome.
I saw the Neuro a few weeks back now, where he said (or at least the wife and I thought he said) that I did have MS. He said that a lumbar puncture which is used to diagnose MS is not required, as my treatment of the disease would not change with having a lumbar puncture. The outcome would be the same.
Anyway, a letter dropped through the letterbox on Saturday morning which had been sent to my doctor and I had been copied in.
The letter states that "after studying the MRI head and c spine images, it is agreed that the appearances are sugggestive of demyelation. No further investigations are requested at this current time."
A letter has been sent to the local MS nurses asking them to contact me as I have now been given a "new" diagnosis of "likely Multiple Sclerosis" and their input would be appreciated.
Is this normal? Should I have told the DVLA and my employer that I have "likely Multiple Sclerosis" and not official Multiple Sclerosis? like I did tell them, much to my annoyance. I wanted to keep this confidential and now I have put myself into a very awkward position at work regarding my ability to work.
What happens now? I guess if i'm lucky I get to see a nurse, but then what? Do I have to wait untill I have another major relapse and I lose control of a limb or bowel or something.
I'm already four weeks into an episode where I am having severe muscle cramps in my right leg and walking is becoming more and more troublesome.
No chuffin` wonder you`re confused! Any one would be!
But I can relate well to your post, as a similar thing happened to me...........no, it happened a few times! I was in and out of limbo myself.
But if your MRI showed clear signs of demylination and your clinical presentations are typical MS...then why has your definite diagnosis of MS, changed to a probable one? I think having an LP would shed more light on the diagnosis. When you speak to an MS Nurse, ask about an LP.
you now have what they call `a working diagnosis` ie indefinite. You have already told the DVLA and your employer...you cant really untell them, but if it were me, I would tell my empolyer what`s happened. Hopefully he will be understanding.
I hope the current relapse leaves you soon.
luv Pollx
But I can relate well to your post, as a similar thing happened to me...........no, it happened a few times! I was in and out of limbo myself.
But if your MRI showed clear signs of demylination and your clinical presentations are typical MS...then why has your definite diagnosis of MS, changed to a probable one? I think having an LP would shed more light on the diagnosis. When you speak to an MS Nurse, ask about an LP.
you now have what they call `a working diagnosis` ie indefinite. You have already told the DVLA and your employer...you cant really untell them, but if it were me, I would tell my empolyer what`s happened. Hopefully he will be understanding.
I hope the current relapse leaves you soon.
luv Pollx
21 Oct 2013 at 5:00PM
My initial letter did say "likely MS" after a spinal MRI was
referred to him and he did a physical exam.... During my next
appointment (after my head MRI) he said "likely primary progressive" so I
immediately asked if it was definitely MS and he said undoubtably, just
the type isn't certain.... see you in 12 months!
I didn't need a LP either but I think they do word things a bit vaguely in their letters. I was initially referred as my spine MRI just showed loads of white dashes and the brain one showed a whopper so I guess quite clear.
You did the right thing telling DVLA.I didn't think you actually had to tell your employer tho.
Speak to your MS nurse if you ave queries, they are fab help :)
Sonia x
I didn't need a LP either but I think they do word things a bit vaguely in their letters. I was initially referred as my spine MRI just showed loads of white dashes and the brain one showed a whopper so I guess quite clear.
You did the right thing telling DVLA.I didn't think you actually had to tell your employer tho.
Speak to your MS nurse if you ave queries, they are fab help :)
Sonia x
21 Oct 2013 at 8:09PM
Thanks Poll and Sonia.
I only told my employer as it was down to an insurance issue and they needed to know because of that. One thing my employer said was that due to the diagnosis I was covered under a critical illness policy, which they suggested I put a claim in for. Now I guess that I can't claim as part of the criteria requires a definitive diagnossis of MS. I only have three months from diagnosis to make the claim, so i guess that as this is only "likely MS" then its not a definitive diagnosis.
Unless Likely means "Yes but no, not really"............................confused.com again
I only told my employer as it was down to an insurance issue and they needed to know because of that. One thing my employer said was that due to the diagnosis I was covered under a critical illness policy, which they suggested I put a claim in for. Now I guess that I can't claim as part of the criteria requires a definitive diagnossis of MS. I only have three months from diagnosis to make the claim, so i guess that as this is only "likely MS" then its not a definitive diagnosis.
Unless Likely means "Yes but no, not really"............................confused.com again
21 Oct 2013 at 8:28PM
during my first appt with a Nuero he said to me I had MS
symptoms and used the wording probable MS. I was at the time not
expecting this so I waited for the letter to get to the doctors before
speaking to anybody, when it arrived I rang the surgery and the
receptionist said it said probable MS. So I told work and family.
A few months later I needed a copies of this letter for work and when it arrived it said nothing of probable MS.
thats when I started my journey of looking into everything further, and I still feel no wiser.
not sure if above helps you other than you are not on your own.
xx
A few months later I needed a copies of this letter for work and when it arrived it said nothing of probable MS.
thats when I started my journey of looking into everything further, and I still feel no wiser.
not sure if above helps you other than you are not on your own.
xx
No comments:
Post a Comment