Orthotics appointment - depressing

Well that was disappointing. I went for Orthotics appointment as refeffered by physio. he thought i had a foot drop which i didnt agree on. my left foot the toe next to big one is always up in the air and went it moves jeez the pain is horrilbe. i cant even put my foot down on the floor. At night neuropathic pain is so bad. I can barely walk now just a few steps then rest as i drag my left foot with me.

anyway went to orthotics saw two specials, a physio and the orthotic/neuoro guy. After a lot of tests they said nothing they could do for me me as the devices would just make my problem WORSE. Basically what they are saying is i am doomed. my left side is very weak my left leg is useless not even physio can repair it as its mainly down to nerve signals. Nerve signals are the issue. i.e. I have no idea where my foot is. I cant feel it, not sure what its doing, i have forgotten how to walk and just dragging it along with my right.

All they could offer was pain medication to make me more comfortable.

That was it.

My daughter came with me, so i had someone to decipher it all.

She felt depressed for me, as it seemed they were just saying to me you have had Progressive MS a long time, you have issues which your body is dealing with in its own way, and all we can do now is make you comfortable.

Well woopee do da. That was a waste of an hour out of my life, and all it did was trigger pain in the night and despair.

I never want to go to orthotics it was pushed on me via physio.

So has anyone else been to see them and did they get help.

what they said was I cant wear shoes as it makes my left foot worse, my ankle is weak and any device would be too heavy for my weak leg to cope with.

end of.

Sorry i do feel depressed over this. Its like being told thats it folks…

Aw CC

That’s so awful. I am sorry. I’m not in the same boat (shoes) as you but I do have useless feet.

I did have foot drop which was treated pretty poorly by Orthotics Dept and by all the various devices I tried (and mostly paid for). The Orthosis they gave me first was impossible to get on and gave me a massive sore on my heel. Then I tried a ‘foot-up’, which worked a bit.

I then tried FES (for which I had to pay due to my CCG being *#@‘+s). Slightly helpful. Then SAFO (I paid again!): only useful in a swimming/hydro pool.

Then I had a big time relapse, went dead from midriff to toes, couldn’t move a thing until about 10 days later I could move one toe. I gradually, with rehab, became capable of walking about 10 metres a couple of times a day with the FES and a walker.

Then I broke my femur in a fall and that was the end of any walking at all. (Fixed with meccano! Still hurts!)

So now neither of my feet will pick up at all. I used to have one good (ish) right leg and one bad left. Then foot drop caused me to have one lousy right foot/leg and one bad left leg. Now I have two cr@ppy legs. Neither of them work at all. And I have no idea where my feet are either. Makes life very, very difficult. (Put mildly!)

So I really do feel for you. To have an orthotics appointment foisted on you makes you believe (against your better judgement I’m sure) that ‘something’ will help. Then to be told ‘nope, you just have rubbish nerves’ must feel like ‘yeah, tell me something new’!!

You often inspire people on here with your positive attitude. The way you’ve dealt with your dreadful grief, the disappointing move, the second move plus your increasing disability, has been inspiring. And you are still helping people throughout.

I can’t offer any wisdom. I don’t have PPMS, but PRMS. I don’t have the same kind of problems with my feet. But I do know there is more to life than walking. A ballsy woman like you will I’m sure get through this in spite of wanting to curl up and have someone (preferably a reincarnated hubby) cuddle you till you feel better.

Sue x

1 Like

Sorry to hear this CC. Sending hugs

Anne

1 Like

Thank you Sue. You know how hard it is for us to go out for appointments it draiins the battery for nearly a week. Life is short enough without attending useless appointments. The physio guy said he knew all about MS hence the appointment, what he feels to even understand that there is not just one form of MS. RRMS, then are others and mine is rare PPMS. it affects us totally differently. In the states they actually call it SPINAL MS. I just knew it would be pointless but i went because i didnt want anyone saying on my notes she didnt try lol.

I have calmed down now. My fix for this. buy a caravan, locate it on my land which i bought with my daughter for horses and dogs etc she lives up there off grid. I am then going to use it as a small holiday get away lol. its only located 3 miles from me so wont tire me out.

This old bint, aint ready to give up yet. My grandson lives up there too and we are going to start a little garden centre business. he loves growing things, so thats what he will do, and i can help with paperwork. I know i have to accept that my PPMS is in free fall, and the council visited me 2 days ago and agreed my place the doors are not wide enough so they are going to see if i can eventually move into an adapted one. I know another move but this time it will be my last (chuckle).

Thanks for your support you have been brilliant throughout. xxx

2 Likes

Good you are so buyount CC. Keep going and let us know how you get on.

Anne

1 Like

I try hun. I am a realist i know there is nothing for me, not really just making me comfortable. I am happy as i have a project which keeps me going. I help children in Kenya at a school in the slum area of Nakuru.

I have helped them through covid crisis, it keeps me smiling hun. I mean i managed to get money enough to buy the children a banana each at school for their lunch. 400 of them lol.

When you see this cheeky smile it makes what is going on with me nothing compared to the hardships these lovely children face everyday.

the mission relys on sponsors but because of covid they are short so i try to help where i can. the children happy at lunchtime with thier gruel porridge and a banana lol.

xxxxxx

1 Like

Oh CC I love this, its so very kind of you and yes it’s so worth it to see the children smile.
:smiling_face_with_three_hearts: Maz

1 Like

I started a go fund me page i hardly got noticed, so i use my savings to help. i lived in Kenya for a year my memorys there keep me going. the people and children are always so happy. If i didnt have this stupid disease i would have gone back to live there near the mission. I have to hold onto something lol. xxxx I sponser 3 girls to the school. one of them now Precious (i just love their names) passed her state exam even with covid and no schooling and she is now leaving for state school at 17 to start the next stage of her education, she wants to be a teacher. xxx

Hi CC, It’s a lovely thing to do. I lived in Nigeria for 4 years and do a similar thing. Happy memories of some wonderful people. :kissing_heart:

2 Likes

Thank God there are people in the world like you above.

Anne