Hi there! I’m from the US and I’m traveling to see my sister in Paris over the holiday weekend. Is there anything I should try? I’m in my 40s with pretty normal, sometimes dry skin (winter months). I usually use Tatcha and other Korean products but also a little Lancôme and Kiehls.
Any suggestions welcome! I’ll be back in a couple of months and try other stuff for winter.
I’m still being tested for neuro sarcoidosis, but I have a question — has anyone had diminished feeling/loss of sensation? I have it from about my chest down. I can’t feel my left, my genitalia (sex sucks now), and anything on my torso. It keeps getting worse. I’ve now lost a lot of sensation in my arms. I can walk and move, but it’s just…weird.
I’m perfume obsessed, and I’m going to Paris for a long weekend (my sister is working there and it’s free to stay, plus I just need a weekend getaway). Are there any perfumes I should look for that I can’t get in the US or something that will be much more affordable there? I love Guerlain (I bought a bottle last time I was there and she bought me one for Christmas) and have a couple of bottles. I’m into florals but also have an antique bottle of Chanel that was my grandmother’s that I wear for special occasions. Thanks! Really looking forward to some Parisian shopping.
I went to a witchy shop today with some friend, and sat while they shopped and talked to the owner. She said she was clairvoyant and told me I had “genius energy.” Which, to be fair, I run a company that’s doing well (small business).
What stuck with me, is she said (I told her I’d recently gone through a health issue) I need to get a second opinion and don’t let them put me under. I am going for a second opinion (didn’t tell her) in a couple of weeks and they have to do more testing, likely a biopsy under anesthesia.
What should I make of this? I generally don’t believe in any of this but some of the things she said, I felt she saw inside me. I don’t know how to explain it.
Hi there! I’m going through a million hoops, but how did sarcoidosis come up in your bloodwork or labs? I’ve been diagnosed with myelitis but they’re walking it back and think I may have neurosarcoidosis (nothing is improving). Thanks!
I’m going to Paris next week (my sister is going to be there for work, I’m joining her last minute). I want to go to the Louvre on a Thursday but my flight gets in at 11am. Is it insane to think that I can get there for the last 2-3 hours? The rest of the week we are going to the French country side. I’ll be back in December for Christmas, but have some time before I meet her for dinner. Thanks. I know this is random af.
I was diagnosed with TM (specifically sensory myelitis) but now my neurologist thinks I may have neuro scarscoidosis (I don’t think that I’m spelling they correctly). Anyway, a lot of the same symptoms but lymph node issues, which I guess after a CT I had some pop up around my lungs and heart.
Has anyone had a different diagnosis later, maybe specifically this one? I’m almost 2 years into this, and I’ll admit, this is a freaking nightmare.
Also, I don’t know what is in the air, but I’m exhausted. My fatigue seems unreal this past couple of weeks.
Hi there! I’ve been going on 18 months of testing for EVERYTHING. I was originally diagnosed with transverse myelitis (which I think seems similar diagnostics), small fiber neuropathy (after a biopsy) and maybe FND. Now, the neurologist seems to think I have neurosarcoidosis based on a CT scan that I had with nodules on my lungs and heart area.
I’ve been dealing with so much and I’m frustrated/upset. I feel so weak despite going to PT twice a week for over a year at this point. I work an incredibly demanding job and the fatigue is sometimes all-consuming. I’m also scared what this means.
Any help/thoughts are appreciated. Did it take this long for anyone to get diagnosed?
Hi fellow 80s babies!
Quick question, I’m the sibling that lives far away and I see my parents 2-3 times a year (probably totaling less than 2 weeks annually).
How are you able to tell if your parents are starting to have memory issues? My sister doesn’t see it, but my mom repeats herself or tells me the same story, several times. My dad forgets what my mom made for lunch. I’m just having trouble deciphering between normal memory issues related to age and that of dementia.
My siblings see them more often, but blame it on age.
Thanks, friends.
I’ve been told I don’t have ALS, but I don’t even know who to ask this or if this could be asked in any other sub.
I’ve had two EMGs and my last one was worse. I have small fiber neuropathy (biopsy and all) and it started in my left leg, now my left foot is numb and it’s in my right leg. I feel it in my face/cheeks, up my back and in my arms, too. I’ve also noticed my right arm is getting weaker (both are, but my right wrist seems to be doing a t-Rex arm when I sleep).
I am getting a third one sometime this summer, depending on schedules of the three neurologists that I see — they want me to just come for a whole day instead of piecemeal the appointments (I honestly appreciate this).
I’ve been tested for everything. I’ve had genetic testing, lumbar puncture, extensive MRIs, etc. I was diagnosed with (maybe) sensory myelitis but they’ve referred me to a neuro muscular specialist. I’ve seen him once, I wasn’t impressed. He had to leave to read my chart in the middle of the appointment(he didn’t before…).
Anyone have any advice? I am desperate. I go to PT 2-3 times a week and I’m not seeing any improvements. Some things aren’t as bad as when they started 18 months ago (I couldn’t use my legs and right arm and lost control of my bladder), but the neuropathy is so much worse and painful.
We are in the office 5 days a week, but I’m super flexible with letting people wfh. Given the gas prices, maybe not being able to give raises, and just the general cost of living increases — has anyone institute WFH or just said, “hey, only come in 3 days weeks we aren’t busy,” or even gone to a 4 x 10 schedule? I really want to do what’s best and also help people as costs continue to rise.
I had a terrible bout of Covid in 2024 after a conference, and after avoiding people since basically March 2020. A couple of months later, after coming back from a 10-day vacation, I started getting muscle weakness, lost bladder control, and was in and out of the hospital for a month (at one point couldn’t use my legs or right arm).
I finally went to a top hospital for neurology and rheumatology (where I live has terrible healthcare) and was told after 18 months of every test imaginable (along with at least a dozen MRIs, a lumbar puncture, genetic testing) that I have small fiber neuropathy (via biopsy), myelitis (likely) and FND (which is a joke of a diagnosis, IMO).
I keep getting weaker every time I have a follow up appointment with the neurologist. I don’t think she believed me; but my PT (who is a family friend, who’s been advocating for me since day one) sent her my strength tests from 6 months at a time.
We’ve asked every doctor about long covid, because other than covid I’ve only had the flu once ever, and they dismiss the idea (never any neuro issues and there aren’t any in my family). I’m at a loss. Money isn’t the issue, it’s finding someone that will actually take me seriously. I will go anywhere at this point.
Does anyone have any advice? Thanks.