Jennifer La Spina

I am not on the computer enough to be tracked; however, FYI I get much worse both orthostatically and with pain (hypermobility EDS) with drops in the barometer. That includes if the barometer is high and drops to normal. I'm curious as to what your statistics will show. Fluid (in joint spaces as well as your blood volume) reacts to barometric changes which is why weather does affect us autonomically and with arthritis, pain. LIT

My recent move has left some things unrecovered (myself included!), including the name of a doctor (NOT Dr. Mazzola) someone recommended maybe a year ago at LIJ. Please help me out if you can with his name or anyone else that is great in the Long Island/NYC area. Send e-mail to my regular e-mail: llaspina@optonline.net being that I haven't been able to get online in a good long while. Many, many thanks, LIT

I have an appointment Tuesday, November 26th with Dr. Grubb. I'd love to switch with someone who has an appointment several months later (spring perhaps). The trip will set me back quite a bit I fear. Because of its proximity to Thanksgiving my husband is finding it extremely difficult to make the trip with his teaching responsibilities. Additionally, we just moved (from Amityville to Lindenhurst, still on LI - I haven't updated any info yet) and are too housepoor to afford 2 plane tickets, rental car, airport parking, hotel... But for someone desperate to get in this can be a great opportunity. I have the hotel on the hospital campus booked at the special patient rate (somewhere in the neighborhood of $75/night) for a few nights as well. Let me know ASAP at my regular e-mail: llaspina@optonline.net. I haven't been on here for a long time as renovation & moving has absoultely depleted me. So please e-mail where my husband can keep an eye out for it with Dr. Grubb appt. written in the subject line. Many thanks, Jennifer

There is also a silicone gel product designed to ease donning of compression stockings. (I had seen it at Bright Life direct.) -lit

A WARNING FOR EHLERS-DANLOS SUFFERERS: The quinolone antibiotic family (e.g. Cipro, Floxin, Levaquin etc.) has a general risk of tendon rupture, damage and pain. For those with EDS these should be avoided if at all possible due to our fragile tendons which increases our risk. The NYC EDS support group recently discussed this and thought it should be part of an educational campaign. Just thought I'd pass it along. LIT

I've recently been suffering with a so-called neurogenic bladder. (Several days ago I sent you a PM through this site.) Anyhow, some tips to try for the soreness: -Clean with mineral oil on a cotton ball which would also provide a little protetive barrier for the skin -Desitin (baby) cream - a thicker barrier to prevent chafing and promote healing -Launder underwear in Dreft or any other gentle baby detergent -Hypoallergenic, fragrance free sensitive baby wipes instead of tp -Be very careful of seams in underwear (location and thickness of them) and you may be more comfortable in skirts instead of pants for a while. Again, with pants be careful that the seams are not creating a large lump and subsequently, pressure where they overlap. -OTC feminine anasthetic cream with benzocaine for severe soreness, esp. if you need to sit. It might sting for a few minutes, but numbs you for a few hours. Vesicare prescribed by my rheumatologist helped me although the specialists I saw (urologist and 2 neurourologists) said it shouldn't work and would be contraindicated with some of my findings, yet they had nothing to offer. Dr. Grubb and I very briefly discussed this. When I asked about DDAVP as he recommends in his Syncope book, he mentioned recent use of Cialis for POTS/neurogenic bladder. He said many POTS patients have neurogenic bladder and overflow incontinence. I asked him for some info in medical literature or studies, but have yet to recieve any. I will pass along anything useful I come across. As an aside, Detrol LA made me worse - after 2 weeks I had to strain a lot although I still always had the urge to go. It took a while to find something that helped, so as long as the Vesicare works I'm sticking with it. Take care. LIT