I have PPMS newly siagnoswd at 62 y of age For awhile now have had burning throbbing pain in butt when sitting- also presdure on my legs makes feet more uncomfortable laying On back get throbbing pain low back and sacrum area very debilitating as cant sit and rest or lay comfortably was told do PT as maybe Related to altered gait and hip Back pain no help yet Anyone have anything like this ??
Who else has severe vertigo that has prevented getting an MRI? The new McDonald criteria define optic nerve lesions on OCT or VEP as relevant. Who has experience with this?
I haven’t personally had vertigo severe enough to prevent getting an MRI, but I know that’s a real issue for some people.
From what I’ve been reading, the updated McDonald criteria now include the optic nerve as a fifth area for MS diagnosis, and OCT or VEP can be used to show lesions there. So in some cases, those tests can help support a diagnosis when MRI is limited or incomplete.
Hello! I'm newly diagnosed and was wondering if any of you have had any luck treating neuropathy. My feet/legs pretty much hurt all of the time. Thanks in advance for your tips! 😊 God bless each one of you!
I recently got off Gabapentin because i felt like it wasnt helping! I tried for over a year.
The cog fog is no joke - anyone else feel like their brain just won't cooperate some days?
Yeah, I totally get this - hard not to get frustrated but really trying to teach myself to give myself the time I need. Some days are better than others. Recently have been trying to put less pressure on myself and those days tend to be better.
That burning throbbing pain when sitting and lying down is so cruel because there's just no escape from it is there - you can't even get comfortable enough to rest.
Yes a lot of us know this kind of pain - with PPMS it's really common to get that nerve pain. A few things that some people find help:
- A good memory foam or coccyx cutout cushion for sitting can take some of the pressure off
- Heat or cold packs on the lower back can take the edge off for some people
- Ask your neuro specifically about nerve pain meds like Gabapentin or Amitriptyline - PT alone won't touch nerve pain, that's just the reality
- A heated mattress topper has been a game changer for some people with overnight pain
Definitely worth going back to your neuro and being really specific about the burning and throbbing - those words matter because they point to nerve pain not muscle pain. You shouldn't just have to put up with this.
Hang in there 💙
Also - check out the ms life Community Shop - theres likely some products from stores they are affiliated with.