Return to Work! - January 2012 to March 2012
January 2012
Went back to work full time, though could work from home for 3 days a week. Such as relief to get into the swing of things, gradually hoped to be able to visit customers and get back to normal!
Had symptoms of numbness around the back of my hands and lower arms, also tingling in my fingers and down my arm, ignored this for 2 -3 weeks and then decided to go to GP and get it checked out. GP checked for trapped nerves, referred me to specialist so made a private appointment to see the same one I had previously as he knew my history. He organised a scan of my spine and the results came back negative.
February 2012
In Southampton General after more tests in by private consultant, he reckons there has been severe degradation in reflex response, so need to have tests done and urgently. Had large amount of blood tests and a lumbar puncture performed, results came back inconclusive to CIDP relapse, so given a choice of two treatments, steroids at home (with risk of high blood sugar levels – whilst taking them) or IVIG at Southampton. Depending on the results of which I chose they may need to perform the other (if I do the IVIG 2nd they can perform it at Portsmouth – which is much nearer to home!). I chose the Steroids first and to go home.
Steroids 60mg every other day, kicking in and causing some discomfort (migraine/headache over left eye for around 4 hours turns to muzzy head, slightly dizzy, not feeling well, plays havoc with my diabetes).
Seen doctor who has said these side effects are nothing to worry about and hopefully they will diminish over time.
Been back to the consultant who has stated the steroids seem to be providing some +ve results and I do seem to be able to "feel" the ground with my feet for the first time in ages. Areas are still definately numb. The consultant stated there are still two possible issues, relapse of CIDP or Sarcoidosis, which they are going to carry out further tests for, plus I need to have an eye appointment to check on my glaucoma.
Long term usage of steroids is not good for you and I now carry a blue card to this effect as I could go "cold turkey" and suffer serious withdrawl symptoms of they are just stopped. Need some calcium like intake, though not directly calcium in case I do have Sarcoidosis and I need the calcium due to the soft bone damage caused by the steroids.
Also starting to reduce the dosage of steroids next week. Approach appears to be very hit and miss as all they will do is reduce the dosage (50mg next week, 40mg the week after) and see if there is no further improvement or a reversal. Depending on what happens this is where I will remain (which could mean steroids for the rest of my life)! No one will comment on this as they all refuse to be drawn.
March 2012
Back to work! Lets see what the future holds. Mentally seem to be OK, physically still improving and have a fair way to go. I seem to get tired very easily and apprently this is common, like everything else it may never completely clear.
Having to answer questions about what can I do, is it safe for me to...... and I just don't know the answers (no-one does, my doc has no idea and refuses even to answer the question in the vaguest way). All I can do is take 1 day at a time, try and do something and see if I am OK aftewards.
Seeing the consultant on the 13th to check on the effects of reducing the steroids and my continued improvement (or not). The Calcium, replacement is a hum-dinger, take once a week, sit or stand for an hour afterwards (do not lie down!) and don't eat anything in that period either (apparently it burns!) - getting the stuff tomorrow (Friday 2nd). As for the Sarcoidosis going for a scan later in the month.
Went back to work full time, though could work from home for 3 days a week. Such as relief to get into the swing of things, gradually hoped to be able to visit customers and get back to normal!
Had symptoms of numbness around the back of my hands and lower arms, also tingling in my fingers and down my arm, ignored this for 2 -3 weeks and then decided to go to GP and get it checked out. GP checked for trapped nerves, referred me to specialist so made a private appointment to see the same one I had previously as he knew my history. He organised a scan of my spine and the results came back negative.
February 2012
In Southampton General after more tests in by private consultant, he reckons there has been severe degradation in reflex response, so need to have tests done and urgently. Had large amount of blood tests and a lumbar puncture performed, results came back inconclusive to CIDP relapse, so given a choice of two treatments, steroids at home (with risk of high blood sugar levels – whilst taking them) or IVIG at Southampton. Depending on the results of which I chose they may need to perform the other (if I do the IVIG 2nd they can perform it at Portsmouth – which is much nearer to home!). I chose the Steroids first and to go home.
Steroids 60mg every other day, kicking in and causing some discomfort (migraine/headache over left eye for around 4 hours turns to muzzy head, slightly dizzy, not feeling well, plays havoc with my diabetes).
Seen doctor who has said these side effects are nothing to worry about and hopefully they will diminish over time.
Been back to the consultant who has stated the steroids seem to be providing some +ve results and I do seem to be able to "feel" the ground with my feet for the first time in ages. Areas are still definately numb. The consultant stated there are still two possible issues, relapse of CIDP or Sarcoidosis, which they are going to carry out further tests for, plus I need to have an eye appointment to check on my glaucoma.
Long term usage of steroids is not good for you and I now carry a blue card to this effect as I could go "cold turkey" and suffer serious withdrawl symptoms of they are just stopped. Need some calcium like intake, though not directly calcium in case I do have Sarcoidosis and I need the calcium due to the soft bone damage caused by the steroids.
Also starting to reduce the dosage of steroids next week. Approach appears to be very hit and miss as all they will do is reduce the dosage (50mg next week, 40mg the week after) and see if there is no further improvement or a reversal. Depending on what happens this is where I will remain (which could mean steroids for the rest of my life)! No one will comment on this as they all refuse to be drawn.
March 2012
Back to work! Lets see what the future holds. Mentally seem to be OK, physically still improving and have a fair way to go. I seem to get tired very easily and apprently this is common, like everything else it may never completely clear.
Having to answer questions about what can I do, is it safe for me to...... and I just don't know the answers (no-one does, my doc has no idea and refuses even to answer the question in the vaguest way). All I can do is take 1 day at a time, try and do something and see if I am OK aftewards.
Seeing the consultant on the 13th to check on the effects of reducing the steroids and my continued improvement (or not). The Calcium, replacement is a hum-dinger, take once a week, sit or stand for an hour afterwards (do not lie down!) and don't eat anything in that period either (apparently it burns!) - getting the stuff tomorrow (Friday 2nd). As for the Sarcoidosis going for a scan later in the month.