Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone, I'm new here and have some questions I hope you can help me with. I'm being tested for Lupus, MS, Rheumatoid Arthritis (spelling)
I'm just wondering if anyone experiences weakness and numbness in your legs when taking a hot shower or being out in the heat. Double vision, shaking (all over your body) head bobbing, or walking issues.
I drag my feet alot when I walk a few steps, and legs don't want to work at all at times.
Alot of other symtoms too with rash from tanning beds and sunlight which goes away and doesn't leave any scarring on my skin like it did my brothers when he had lupus.
Getting so frustrated with all these symtoms and doctors that can agree with each other. One says MS, the other says maybe MS, but could be lupus or rheumatoid arthritis.
Seeing two new specialists soon for the lupus and rheumatoid arthritis.
If they say I don't have either then they will label me with MS. in the meantime no treatment for symptoms and I'm scared of permanent damage being done to my legs. I have to use a walker, cane, and wheelchair almost on a daily basis.
Please if you can help me I would appreciate it more than I can say.
Kath
I'm just wondering if anyone experiences weakness and numbness in your legs when taking a hot shower or being out in the heat. Double vision, shaking (all over your body) head bobbing, or walking issues.
I drag my feet alot when I walk a few steps, and legs don't want to work at all at times.
Alot of other symtoms too with rash from tanning beds and sunlight which goes away and doesn't leave any scarring on my skin like it did my brothers when he had lupus.
Getting so frustrated with all these symtoms and doctors that can agree with each other. One says MS, the other says maybe MS, but could be lupus or rheumatoid arthritis.
Seeing two new specialists soon for the lupus and rheumatoid arthritis.
If they say I don't have either then they will label me with MS. in the meantime no treatment for symptoms and I'm scared of permanent damage being done to my legs. I have to use a walker, cane, and wheelchair almost on a daily basis.
Please if you can help me I would appreciate it more than I can say.
Kath
I am new here also. Originally diagnosed with RA now Lupus on top. Mine may be drug induced the jury is still out.
I'm guessing that there is no definitive test for MS?
The walking and shaking and leg weakness issues are not something I have dealt with with either the RA or Lupus but I know they are symptoms of MS. Have you tried to contact the MS society? They can be very helpful for finding medical care in your area.
Yes, the double vision and weakness with heat are symptoms of MS and many of the other symptoms are Lupus and general AI. Unlike many of the AI disorders, MS has some tests that are definitive. If either the MRI or especially a lumbar puncture come out positive, then MS meds may help you. If I were you, I'd leave the team of frustrating doctors and find a good neurologist to tell your symptoms to. S/He will most likely test you for MS and maybe other things. If it's positive, there are some meds that are very effective at slowing down your symptoms. (My sister had pretty much your experience and the MS symptoms are under control now) Instead of ruling out lupus and RA, leaving MS as the default, I would think you should have a neurologist rule out MS and then parcel out the remaining symptoms to various AI disorders. My sister has a neurologist to treat the MS and a rheumatologist to treat RA and fibro. But get the MS treated right away - that can do some permanent damage. Please keep in touch here. Hang in there.
Lauren