Sarcoidosis for four years

[hope_4_cure]

I have lived with sarcoidosis for four years. Initially it started with a cough, and numbness in my feet and legs up to my waist. While the respiratory symptoms have disappeared I still have the numbness and pain in my lower extremities. Is there anyone out there with the same numbness?

[erjlg3]

Yes. I too have this intermittently. I am having it now. Right foot. It usually is from my bends of my arms and legs down to my toes.

[pookie38]

Yes I to have the numbness it comes and goes ive been taking gabapintin for it but it really doesn't help.

[MG82]

Hi, I have severe loss of my motor nerves in my left foot that I have foot drop and have to wear a splint for. I take gabapentin and tramadol for the crawly pains that go with this. I have got on with this a bought myself a new splint called a Safo that I can swim in and have a lot more flexibility. Since then my right foot and left hand are deteriorating and I'm scared I will lose the mobility of them 2.

Are you able to still mobilise with your numbness? Do you have any weakness in your lower limbs? I am new to sarcoid, just waiting for my final scan to confirm diagnosis. How quick has yours progressed?

I hope you can recover 🍀

Helen

[hope_4_cure in reply to MG82]

Hi

When I was first diagnosed I could barely get ou of bed, but over a year was able to progress to walking with a cane. Now, three years later I can walk at least four kilometres without a cane, so I consider myself fortunate. I still have the numbness though and sometimes pain in the joints.

I did try Gabapentin for a few months but it didn't help at all...only made me gain weight...constantly hungry!

[MG82 in reply to hope_4_cure]

That's great going,

well I can at least gain some hope from this. I don't hold much hope for my left foot but certainly hope to improve my left foot and right hand function.

What pain meds are you on at the minute?

Helen

[hope_4_cure in reply to MG82]

I'm not on any pain mess now. Very rarely I take a couple of extra strength Tylenol only when I really need them. I would say that only occurs maybe once a month or less. I guess I am quite fortunate.

[pookie38]

I have numbness in my feet ,legs I take gabapintin but it barely works