Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This is a follow on from previous post which has gone way back I think so thought would start new one.
The Dr's are blaming it all on steroid use so just a warning of troubles that can happen with too much steroid use. I don't mean once a year I mean more. I refuse to take nothing can be done too.
Hospital visit yesterday was different to say the least. When I finally saw a Dr he told me exactly what I already knew - that the the blood was not getting to the toes & parts of the foot & showed me the x-rays etc. He then went on to say that there was nothing Further they could do to help, it was just a matter of wait & see if it healed itself.
NOT GOOD ENOUGH FOR ME!
I got on my horse (or whatever you call it), angry & argued with him. I just pointed out that similar happened with left foot & ended up I couldn't put it down to the ground at all. I ended up with surgery that was basically a reconstruction of my foot & was on crutches for 3 months & that was before ms.
I then went on to say - that what you are telling me is that I just have to put up with not being able to walk & stay in wheel chair & in the future could be using permanantly due to my foot not ms.
NOT GOOD ENOUGH. Then asked him would he accept it if that was him & he couldn't answer & got very uncomfortable.
I demanded some form of help, said I don't believe that in this day of medical advances that there is nothing that can be done or at least tried as I don't want to be stuck with using the cam-walker boot all the time & wheelchair.
He then said that he could refer me for a mri of foot & referral to the foot & ankle specialists at Moorabin hospital (different one) & looked at me
(sheepishly). I did say - I thought there had to be something that could be done & thanks for referral.
I did get angry but didn't let that control me fully (no swearing, LOL) but he knew I wasn't leaving until I got some hope of help. Was not accepting, it's the systematic nerve dystrophy & avascular necrosis so basically suck it up & live with it. Stood up for myself & got something at least. May not be able to do anything but at least getting it investigated.
Still in the boot but can take it off to go to bed & can go swimming again.
But wait there's more.....
Coming home from the hospital on the train I could feel a burning feel & sore on right side of abdomen, thought it might be because handbag had leant on it. When I got home it was red & swollen & still bad with a large lump that David could see by night time so we decided if it was still like that in the morning I wouldn't go to work (again) but the Dr.
Woke up this morning & it was even more swollen & I was feeling crap. Rang work & Dr & got an appt 12.30 (earliest). When I got up I thought I was in for a bad one. Left leg would not work & arm wont move, can't even get hand to mouth. Have now named my legs DUMB & DUMBER!
Dr was shocked at redness on abdomen & said it is cellulitits & she has never seen it like that esp on abdomen with no sign of wound. Antibiotics & back to her tomorrow & if it hasn't improved injection of antibiotics. Back again at 2pm tomorrow.
When is it going to end? Good ? for sure.
Thanks for reading my rant/story. I am really fed up at the moment & want off the Dr treadmill but can't see it happening soon.
Aussuue
The Dr's are blaming it all on steroid use so just a warning of troubles that can happen with too much steroid use. I don't mean once a year I mean more. I refuse to take nothing can be done too.
Hospital visit yesterday was different to say the least. When I finally saw a Dr he told me exactly what I already knew - that the the blood was not getting to the toes & parts of the foot & showed me the x-rays etc. He then went on to say that there was nothing Further they could do to help, it was just a matter of wait & see if it healed itself.
NOT GOOD ENOUGH FOR ME!
I got on my horse (or whatever you call it), angry & argued with him. I just pointed out that similar happened with left foot & ended up I couldn't put it down to the ground at all. I ended up with surgery that was basically a reconstruction of my foot & was on crutches for 3 months & that was before ms.
I then went on to say - that what you are telling me is that I just have to put up with not being able to walk & stay in wheel chair & in the future could be using permanantly due to my foot not ms.
NOT GOOD ENOUGH. Then asked him would he accept it if that was him & he couldn't answer & got very uncomfortable.
I demanded some form of help, said I don't believe that in this day of medical advances that there is nothing that can be done or at least tried as I don't want to be stuck with using the cam-walker boot all the time & wheelchair.
He then said that he could refer me for a mri of foot & referral to the foot & ankle specialists at Moorabin hospital (different one) & looked at me
(sheepishly). I did say - I thought there had to be something that could be done & thanks for referral.
I did get angry but didn't let that control me fully (no swearing, LOL) but he knew I wasn't leaving until I got some hope of help. Was not accepting, it's the systematic nerve dystrophy & avascular necrosis so basically suck it up & live with it. Stood up for myself & got something at least. May not be able to do anything but at least getting it investigated.
Still in the boot but can take it off to go to bed & can go swimming again.
But wait there's more.....
Coming home from the hospital on the train I could feel a burning feel & sore on right side of abdomen, thought it might be because handbag had leant on it. When I got home it was red & swollen & still bad with a large lump that David could see by night time so we decided if it was still like that in the morning I wouldn't go to work (again) but the Dr.
Woke up this morning & it was even more swollen & I was feeling crap. Rang work & Dr & got an appt 12.30 (earliest). When I got up I thought I was in for a bad one. Left leg would not work & arm wont move, can't even get hand to mouth. Have now named my legs DUMB & DUMBER!
Dr was shocked at redness on abdomen & said it is cellulitits & she has never seen it like that esp on abdomen with no sign of wound. Antibiotics & back to her tomorrow & if it hasn't improved injection of antibiotics. Back again at 2pm tomorrow.
When is it going to end? Good ? for sure.
Thanks for reading my rant/story. I am really fed up at the moment & want off the Dr treadmill but can't see it happening soon.
Aussuue
Definately don't let them tell you to "just wait and see" - that's what he did and it'll probably cost him from the knee down on both legs.
Patients that have a necrotic episode once have a 60% chance of having it again in the same or different joint in the body if they get steroids. I now do IVIG in lui of steroids when needed. I spent 25 years as a figure skater so my joints are not in the best of conditions to begin with. No sense in tempting fate you know. So I stay clear of prednizone oral and Solumedrol.
Sorry to hear you are having to go through this. No one should ever have to go through this. I remember all to well the excruciating pain I was in with my knee. Where my knee felt like it was in a vise someone was tightening.
Shelleytab I am so sorry to hear of your fathers issues, being in a wheelchair & the expectation of loss of part of legs too. That would be a horrid thing to have hanging over anyone's head & for the family too.
cwcrawford - I am horrified to think of the iv dose for 16 days straight, that is well above what we are given here which is usually 3 days followed by oral if needed. What followed for you sounds like an awful experience for sure.
Can I ask what IVIG is as I have never heard of it all. I have not been told of any alternatives other than natural - vitamins, & one other which slips my mind.
I agree instead of sending me to the orthopaedic Dr's I should have been sent to the foot & ankle specialists but thats how the hospital system works - unfortunately.
As for the cellulitis, it has spread outside the drawn lines (with texta) but my Dr said that it is not as angry/red so will review it again tomorrow. she is keeping a close eye on it as it has stumped her for sure. Tomorrow she will either change the antibiotic or give me an injection if it is worse.
I am staying off work in the meantime as a slight bend or move is hurting too much.
Dumb & dumber (legs) are still the same so I do think I am in a minor flare, probably brought on by too much pain & fighting through it.
Thanks again everyone for replying, messages & hugs, all appreciated.