RLS or FML?

[JustKeepWalking82]

I have creeped around this board for a couple of months, and I am probably that one guest who was online at all hours of the day. So, HI! Unfortunately, I have WED that is 24/7, but am usually unable to get opiates for my RLS. It is mostly because I am young (20 and 21 in 11 days) and the fact that Florida has had two really bad pill farm incidents in the last couple of years. So, most of the doctors refuse to even prescribe narcotics, which happens to be the only thing that works for me. I have a condition which the doctors can't figure out what it is, but with my symptoms it is probably either a neurological condition or mitochondrial disease. I had to drop out of college twice because the symptoms for this condition were so severe. I have seen around 4 neurologists, two endocrinologists, and one neurosurgeon. My primary is trying so hard to get me some relief from not only the condition but also RLS, which I am a third generation. I am currently on Nucynta ER 100 mg, which lasts twelve hours at a time. Unfortunately, I am now experiencing breakthroughs on it that would make anybody else cut off their own legs. I have severe RLS in my entire body that lasts 24/7 and I will not be able to sleep until my body gives out on me, which it has done before. I have been on Trazodone to get me to sleep and help with the nighttime RLS, but that quit working after two days. I augmented on the Requip badly after one dose. I am currently not seeing a neurologist because the last one I saw called me a liar because after taking Gabapentin 300 mg for about three months I started having panic attacks and feeling like I was going to die. He has never had a patient that had side effects from Gabapentin, refused to see me when I made an emergency appointment, and made me see his PA who also said it was impossible. I have been to Dallas, Houston, Pensacola, and Gainesville to find out what my condition is, and now WED has decided to join the ride. I have not been able to get my ferritin level checked because I can barely sleep let alone drive and my mother is just now finishing antibiotic infusions for sepsis from two different infections and broke her leg in May the night before my last final.

[rthom]

Just (can I call you just?), I'm sorry it is so bad at your young age. I can relate to the problems with gabapentin, I've had a lot of bad side effects from it. I wonder if (because you are just starting your life) you might give some thought to moving somewhere at a future date--so you don't have to fight the system for your entire life.
Have you recently had any children--if so, your WED may get some better over time as the childbirth tends to aggravate the symptoms.
Sounds like maybe you should see a specialist (Dr. B maybe) and try to get the Dr. to work with him.

[JustKeepWalking82]

Just is fine. Marisa or Risa, as family likes to call me, is my real name if that is easier for you. I hate that you had bad side effects from it as well. My mom and I are considering the option of moving because my condition gets worse during temps above 80 and below 60. Well, in that range. My mom has gotten to the point that the Mayo may be our only option just because nobody knows what is wrong with me and the fact that Baptist Hospital where I live just recently partnered up with the Mayo. I have never had any children. Actually, I have never been sexually active. I want to see a specialist like Dr. B, but my mom wants to try a neurology group in Pensacola that is with another local hospital to see if they can treat my WED. I would rather go straight to the specialist because I have not had good experiences with neurologists in this area.

[rthom]

I've never seen a neurologist for the WED but I find (and it makes sense to me) that the sleep clinics here know more about it as they see more with sleep issues, but I'm in Canada and don't know how your system works. Mostly I'm going by things I've read here--a lot of tough times.

[Polar Bear]

I am in the UK and found that my appointment with a neurologist was a waste of time.

My GP is willing to learn and we worked from the Foundation documents that I printed off. Also I emailed Dr B and I took his responses and advice with me.
Happily my GP does not get offended when I produce information. Just highlight what is relevant and don't overwhelm with too much info at one time.

Does the Neurology Group in Pensacola claim to treat WED. You need to know that the neurologist is experienced in the disease and is willing to do whatever is necessary to help you.

[JustKeepWalking82]

I am actually at Pensacola International (haha! right...) Airport waiting on my flight to Houston so that I can have a two night sleep study. It is the second sleep study that I have had. I also just found out a couple of minutes ago that I left my Nucynta ER 100 mg, which I use to treat my WED, at home. Ah, I have all the luck. At my last sleep study, which was conducted in Gulf Breeze (a small city right next to Pensacola by a bridge), it was discovered that I have really powerful PLM's that the tech thought I was either kicking somebody repeatedly. rthom, yes, I am also going by the stuff that I have read here. It helps that I am third generation with this because my mom and my grandpa knew right off the bat that I had WED. Mine is the most severe, though. I had a bout of it in junior year of high school, but that didn't last long. Polar Bear, I am beginning to think the same of neurologists over here. Like you, my GP is more like a family friend and is willing to learn. I will probably e-mail Dr. B as it seems that a lot of people have benefited from it. I am hoping that if my endocrinologist ( I am also third generation thyroid issues except I am the first person to ever stump him) does want me to see somebody in Houston that my mom will be okay with it. She wants me to get better in regards to both my unknown condition and the WED, but she is also an overprotective mama bear (the visual of an angry mother bear in the wild is quite accurate with my mother ) and is angry that she can't make me better herself.

Polar Bear, my GP also does not get offended when I produce information. We tend to go through the journey that is me being sick together. My endocrinologist is Dr. Ridha Arem, who is known to be the world's best endocrinologist and also my mother's endo. It helps that he has known me since I was two and my mother and him talk about me and his oldest son (also my age; for a while I was suspicious that there was matchmaking going on- kind of still am) The neurology group does claim to treat WED on their website. However, I am skeptical.

[Polar Bear]

Question is - is the Neurology Group willing to do whatever is necessary to provide relief from WED symptoms ie. will they prescribe opiates if necessary?

And yes... us Mama Bears are a force to be reckoned with !!

[JustKeepWalking82]

I need to call them and ask. Thank you for reminding me! I hope they will prescribe them if necessary because they seem to be the only things that work. I noticed that I do have behavioral changes when I take hydrocodone, but I have had Percocet before from my last neurologist here in Pensacola (he who shall be shunned) due to the possibility of a spinal leak after I had a lumbar puncture looking for MS (I did end up getting a spinal headache- worst headache of my life) and I did just fine.

I believe it! When the PA called me a liar I was afraid that my mom was going to beat him with her walker...She didn't but she did swear a lot on the way home.

[ViewsAskew]

Shoot - I replied earlier but got a phone call and apparently forgot to post it!

Dr Elaty used to be in Florida, but he may have retired. He was a good WED doctor.

Dr Becker is in Dallas/Fort Worth and is very good.

Dr Rye is in Georgia at Emory and I'd see him in a heartbeat!

Have no idea what else I said, lol....

[JustKeepWalking82]

Views, I hope Dr. Elaty is in the panhandle part and not the southern. Unfortunately, Dallas is on the complete other end of Texas. It would be nice if I could just walk over there. Is Emory far from Pensacola? Haha, it happens to me all the time.

[ViewsAskew]

No idea where Elaty was/is. Just that he was in Florida and really did get WED. Yes, Dallas isn't close to Houston, but if you're driving, lol....

Emory is in Georgia - maybe he's pretty close. He actually has WED - he's really nice, too. He does a lot of research on the genes in WED.

[JustKeepWalking82]

Views, I will look up Elaty. My mom doesn't want me to drive because my vision has been going double and blurry, and she doesn't want to risk that happening while I am on the road. Emory is in Atlanta, which is only about 4-4 1/2 hours away from Pensacola. He has WED?! Wow, I was not expecting that. I am glad that he is nice; I am tired of egotistic buttheads sometimes known as neurologists. Have you met Dr. Rye? Which doctor do you see, Views. I can't believe I left my narcotic (very low dose) for my WED at home. Yay...This should be fun. Ugh.

[ViewsAskew]

Views, I will look up Elaty. My mom doesn't want me to drive because my vision has been going double and blurry, and she doesn't want to risk that happening while I am on the road. Emory is in Atlanta, which is only about 4-4 1/2 hours away from Pensacola. He has WED?! Wow, I was not expecting that. I am glad that he is nice; I am tired of egotistic buttheads sometimes known as neurologists. Have you met Dr. Rye? Which doctor do you see, Views. I can't believe I left my narcotic (very low dose) for my WED at home. Yay...This should be fun. Ugh.

Yes, I've met Dr Rye. At WED Foundation events, over the last 8 or 9 years, I've had the fortune to meet Buchfuhrer, Allen, Rye, Becker, Early, and at least a couple more, along with several people on this board (who are all wonderful). During one event, Dr Rye and I were outside of the hall, both pacing - we each got a drink and paced together and chatted, then another person joined us. He's very tall! I liked him and found him very approachable - he wasn't my doctor, but I think he'd be great. He has had WED for many years and totally gets what we go through. I became friendly with Dr B after we ended up sitting together at dinner at a different event. He is now my doctor - I fly there once or twice a year. I'd absolutely see Dr Rye, though, but I don't know if he takes out of state patients. Some do not. There is a specialist about 2 -3 hours away from me, Picchietti, who I also met at an event and like a lot, but he won't take people who aren't local, as he said he's want to see me every few weeks while working on med issues. I have no idea if Dr Rye will or not.

Good luck sleeping tonight. I had my purse stolen one year when in Toronto on a business trip. I didn't leave for two more day. Now, I keep one or two night's worth in my purse, one in my business brief case, one in my luggage....that usually keeps me from forgetting - and if I lose something or it's stolen, I at least have another one. And if I forget or end out out of town without thinking I'd be away, there is always at least one night's worth in my purse. For those of us who would be devastated without, it's one way to never be without. You do, however, have to have enough of a stash of extras to make it work.

[JustKeepWalking82]

I would love to meet Dr. Rye or Dr. B. It is wonderful to know that there are still nice doctors out there who will listen and try whatever they can to help. The WED Foundation event sounds amazing. I would love to go to one. He's very tall? Well, I am only 4' 9" so this should be interesting . I will call either today or after my sleep study to find out if he does accept out of state patients. Thank you for the heads up! I probably would not have even thought about asking something like that.

Thank you. My mother had to give me one of her Norco 10-325 before I left. I was having a WED episode right before I had to leave (of course). That sounds like a good idea. I will probably have to do the same.

[rthom]

Great Idea Ann, and reminder from both of you for the travel issues and how to keep it from being a problem.