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robysue wrote: And how long has the sleep neurologist had your records to review? If I were you, I'd let the regular neurologist know that you are still waiting for the sleep neurologist to review your records and that it has been two and a half months and one major snafu later. Maybe the regular neurologist can say something to shake the sleep neurologist into looking at your records. Or call the sleep neurologist's office yourself and remind them (maybe once or twice a week) that they have your records and that you need a "yes/no" decision about whether the sleep neurologist is willing to take you on as a new patient.

The record situation was yet another SNAFU -- story of my life. He's had the records now about a week or so at best.

As a side note to those that are shaking their heads at me for not hand delivering them myself -- please understand that dealing with a progressive, neuromuscular disease makes everything complicated. It's all I can do to get through a day at home, let alone trying to figure out how to hand deliver medical records. I have to rely on hospital-to-hospital communication. I know it's difficult to understand, but please trust me -- I don't have a choice.

robysue wrote: You have reported the pain to the regular neurologist, haven't you? Other than saying "pain is NOT supposed to be a significant problem with muscular dystrophies", what else did the regular neurologist have to say about the pain? Any advice on what pain killers might be ok to take and how frequently you can take them?

The leg pain has been an ongoing problem for a while. I take two pain meds, at night, to try to alleviate the horrendous pain/aching that I was experiencing. It stopped it for a while (more than a year) and when it started again a few months ago, I started taking it later, hoping it would get me through more of the night. Some nights are better than others and it frequently is worse if I do more during the day. I was busy yesterday, fixing a birthday dinner for my husband (with my kids help of course). My daughter and MIL did the dishes because my legs have been bothering me so much -- they insisted I sit down and let them do them, which I did. I still woke up early this morning with my legs aching like crazy.

I'm going to address it with him again Friday, but I don't know what he'll say or do. This is NOT the neurologist that prescribed the pain meds. If my memory serves me, this group of neurologists will NOT handle pain management and he's probably going to say that he needs to refer me to the university's pain clinic. But I'll wait to see what he says on Friday.

It's hard for me though, at doctor's appointments. I really want to tell my neurologist how bad things are, but I hesitate because my husband is there. My husband tries so hard to make things better for me and it upsets him so much when I am miserable and/or upset. And since I can't get to the appointments without him, I usually try to put on the cheerful face that says "I'm okay" when in truth -- I'm not.

Madalot wrote:I usually try to put on the cheerful face that says "I'm okay" when in truth -- I'm not.

I am not married so I cannot really know how these things work, but you REALLY need to give your doctor ALL information. Can you ask your husband to wait outside for you while you talk to the doctor privately?

Many ((( hugs )))

I just hate those referrals that need the doctor to review records before they even decide to see you.
Years ago when I knew that I was going to need surgery on my neck the doctor (that I worked for) called the specialist for an appointment. We we told "send records and then we will schedule appointment"... so I sent the records which included the MRI showing compression of the spinal cord by the vertebrae. Two weeks went by and nothing. Call to their office "still reviewing"...so I checked with my insurance company and got the name of another neurosurgeon in network. Got the appointment. Yep..need surgery..waited one month to make sure was past pre existing condition time period. Had surgery. Off work 4 weeks.. Back to work and THEN I got the call and an appointment (for 2 months down the road) from the first neurosurgeon.

So sorry you are having such difficulties but glad to see you posting.

snuginarug wrote:

Madalot wrote:I usually try to put on the cheerful face that says "I'm okay" when in truth -- I'm not.

I am not married so I cannot really know how these things work, but you REALLY need to give your doctor ALL information. Can you ask your husband to wait outside for you while you talk to the doctor privately?

I tried doing that during my last regular PCP appointment. I sent my husband away to run errands. That was the appointment where I was very upset and emotional, my doctor saw it, made a note in my record, patted me on the head and said "see you in 6 months."

Unfortunately, I need my husband's help to get into the room and such. I'll have to play it by ear to see what I can get away with on Friday.

Pugsy wrote:I just hate those referrals that need the doctor to review records before they even decide to see you.
Years ago when I knew that I was going to need surgery on my neck the doctor (that I worked for) called the specialist for an appointment. We we told "send records and then we will schedule appointment"... so I sent the records which included the MRI showing compression of the spinal cord by the vertebrae. Two weeks went by and nothing. Call to their office "still reviewing"...so I checked with my insurance company and got the name of another neurosurgeon in network. Got the appointment. Yep..need surgery..waited one month to make sure was past pre existing condition time period. Had surgery. Off work 4 weeks.. Back to work and THEN I got the call and an appointment (for 2 months down the road) from the first neurosurgeon.

I hear you on this one, Pugsy. When I was first referred to this neurologist, it took his office a month to review my records (I know they were sent immediately) and after he decided he would see me, it was 6 months before he had any appointments. He worked me in 7 weeks sooner, during one of his emergency appointments, as a favor to the referring doctor.

Last Friday, I received an email saying I had an appointment in "neurology" at the end of October. At first I thought it was the sleep neurologist, but saw that my appointment for this Friday was gone. Sure enough, it was my regular neurologist. I called and found out that they had accidentally overbooked him for this Friday and they randomly rescheduled 6 patients, me included. Because of all my issues, his assistant put me back on his schedule for this Friday - otherwise it would have been another 8 weeks before I would be seen.

If this doctor wasn't so nice (and smart -- he is smart), I wouldn't put up with this kind of thing. But he is so good.

Reminds me of the time, after the whiplash, that my family doctor insisted I go to ER for chest pain. ER insisted on admitting me and calling in a cardiologist. This was a Friday afternoon. I was NOT a happy camper. I was told Friday afternoon that I was scheduled for a nuclear stress test at 8:30 Monday morning. I asked to go home and come in as an outpatient for the nuclear stress test but the cardiologist would not release me. So I cooled my heels all weekend, NPO after midnight Sunday night.

Monday morning they bring me breakfast. I tell them I can't have breakfast, I am NPO for an 8:30 nuclear stress test. The nurse comes back and tells me I can at least have the juice. WARNING SIGNALS flash in my head. I refuse the juice as well and reiterate I'm scheduled at 8:30. Except 8:30 comes and goes, 9 AM comes, I call the nurses' station and ask what is going on and am told they should be coming to get me at any time. 9:30 comes and goes. 10 AM I call the nurses' station, they should be coming to get me any time now. Yeah, right. I call my family doctor for a release. He can't has to be the cardiologist. I call the cardiologist's office, he's at the hospital. I call the nurses' station and tell them to find him and tell him I want to be released and rescheduled on an outpatient basis. The nurse comes in to tell me he can't be found. So I get dressed and get my goodies together, call hubby and tell him to pick me up out front. I walk out to the nurses' station and tell them I am leaving. They tell me I can't, if I leave w/o doctor's release, my insurance won't pay. I tell them then either the cardiologist can pay my bill, the hospital can swallow the costs or take me to court, I was leaving and I wasn't paying. All of a sudden a nurse whips around the corner w/a wheelchair and says its time for my nuclear stress test. I climb in the chair, we go down to nuclear medicine, the nurse gives the desk my chart and the desk clerk says clear as day, she's not scheduled until 1:30!

That does it! All they had to do was tell me I had been rescheduled and I MIGHT have cooperated. But w/all the BS I had been fed all morning I just said, that's it, I'm outta here. Went back up stairs under my own power, grabbed my belongings and went out front to wait for my hubby.

When I got home I called a cardiologist my friend went to and was happy with, explained the situation and asked if he would see me and schedule the necessary test. HE said he would BUT since he often had to work w/the other cardiologist at the hospital would I ask my family doctor to give a referral. I called my family doctor, brought him up to date and asked him to make the referral to the new cardiologist. Two days later I had the stress test w/the new cardiologist.

FOUR MONTHS LATER I got a call from the original cardiologist's office to schedule a nuclear stress test. I told them that fortunately, I wasn't dead yet, hadn't had a heart attack or stroke yet and had already had a stress test w/a different cardiologist. The clerk apologized, my order had fallen between the wall and desk and was only just found that morning.

I don't use that hospital or that cardiologist and don't recommend them to anyone but do make it a point to relay my experience w/them to all who are (or aren't) interested.

By the way, I did NOT sign anything at the hospital (they wanted me to sign an AMA) and sadly they did find a way to con my insurance into paying the hospital bill and doctor bill.

Madalot wrote: I really want to tell my neurologist how bad things are, but I hesitate because my husband is there. My husband tries so hard to make things better for me and it upsets him so much when I am miserable and/or upset. And since I can't get to the appointments without him, I usually try to put on the cheerful face that says "I'm okay" when in truth -- I'm not.

Maddy, it's time to lovingly say to your DH that you need to talk to the doc alone for a bit on Friday. He'll ask why, so tell him that it's just what you need to do. You can tell him before the appointment him what you plan to tell the doc and that you don't want to upset him at the doc's office. Or you can tell him later, however it works best for the two of you. But tell him that you REALLY need/needed to say it to the doc.

Slinky wrote:By the way, I did NOT sign anything at the hospital (they wanted me to sign an AMA) and sadly they did find a way to con my insurance into paying the hospital bill and doctor bill.

Good job! My insurance has hospital copays - I'm assuming you didn't pay any : )

Not a penny. Never even got a bill from either one of them. I don't remember if back then we had copays or not. We've always paid our own office calls but doctor hospital visits ... darned if I remember. This was about 1995-96.

Slinky wrote: Reminds me of the time, after the whiplash, that my family doctor insisted I go to ER for chest pain. ER insisted on admitting me and calling in a cardiologist. This was a Friday afternoon. I was NOT a happy camper. I was told Friday afternoon that I was scheduled for a nuclear stress test at 8:30 Monday morning. I asked to go home and come in as an outpatient for the nuclear stress test but the cardiologist would not release me. So I cooled my heels all weekend, NPO after midnight Sunday night.

FOUR MONTHS LATER I got a call from the original cardiologist's office to schedule a nuclear stress test. I told them that fortunately, I wasn't dead yet, hadn't had a heart attack or stroke yet and had already had a stress test w/a different cardiologist. The clerk apologized, my order had fallen between the wall and desk and was only just found that morning.

I don't use that hospital or that cardiologist and don't recommend them to anyone but do make it a point to relay my experience w/them to all who are (or aren't) interested.

By the way, I did NOT sign anything at the hospital (they wanted me to sign an AMA) and sadly they did find a way to con my insurance into paying the hospital bill and doctor bill.

Wow Slinky -- what a story. Back in the day when people actually took pride in their work, someone would have lost their job over a screw up like this. Now, this type of thing is so commonplace that people not only accept and expect it, but are surprised if things actually go well. If it were just in the medical field, it would be one thing, but mediocrity seems to be the norm now, with people not really giving a hoot if clients/patients are taken care of or get what they need.

I try so hard to be polite and professional with people, even when they mess up. As a former administrative professional, it's tough to put up with such screw ups and non-service. I know when I was working, screw ups even a fraction as serious would have resulted in termination. You made dang sure you did NOT make such serious mistakes because your job depended on it. Too bad society has gotten away from that mentality.

I think it has come about as businesses and corporations have gotten so big their employees are just .... a payroll number. There is no respect or loyalty to the employees and the employees therefore feel no respect nor loyalty to their employer. How many put forth their best effort for someone who treats them like trained cattle? Supervision walks thru the plant w/o a single well done, good joob, thank you. They look right past their employees when their eyes meet, no smile, or how are you doing today?

A bit of a hijack but just to change the conversation a bit, I went to our Orthopedist today, seems I developed a bursitis in my deltoid arm muscle which is giving me quite a bit of pain. I'm doing all the heavy lifting these days. When the tech brought in the xrays she had taken, the Dr looked at them and told her, "Great pictures"! She just smiled and said "thanks" but I was impressed. I'm sure it made her day. To add to the rest of a very satisfying visit, when he started to give me the cortisone shot I asked if he was going to hurt me and he replied, "Not unless you're my ex-wife"! Cute!. To make sure the xray hadn't missed anything like a small torn rotator cuff(he didn't think so), I'm having an MRI Friday. As of right now, the pain is gone, just a little sore from the shot. So perhaps all is not lost in the medical world, I hope!.

Madalot wrote:It's hard for me though, at doctor's appointments. I really want to tell my neurologist how bad things are, but I hesitate because my husband is there. My husband tries so hard to make things better for me and it upsets him so much when I am miserable and/or upset. And since I can't get to the appointments without him, I usually try to put on the cheerful face that says "I'm okay" when in truth -- I'm not.

Madalot wrote:

snuginarug wrote:

Madalot wrote: I usually try to put on the cheerful face that says "I'm okay" when in truth -- I'm not.

I am not married so I cannot really know how these things work, but you REALLY need to give your doctor ALL information. Can you ask your husband to wait outside for you while you talk to the doctor privately?

I tried doing that during my last regular PCP appointment. I sent my husband away to run errands. That was the appointment where I was very upset and emotional, my doctor saw it, made a note in my record, patted me on the head and said "see you in 6 months."

I wonder if perhaps your husband is terrified when he feels he's the only one who knows how bad things are. For all you know, he may be sitting there in the doctor's office next to you and thinking "If Madalot doesn't want to tell the doc how bad things are I'm not going to make her realize that". It may be a relief for him to actually hear you tell the doc what is going on, and to realize that you expect more relief from the doc than you do from him, and that the doc is his ally.

Questions you don't have to reply to, but do give them a thought: Is your husband a person who prefers a life of denial? Could it be that he thinks you expect him to solve problems that he knows he can't solve? Wouldn't it be more of a comfort to both of you to be honest with each other, and to share the saddness this situation is causing? It seems to me that at this point, you are both so terribly lonely -- living through this horrendous situation and not being able to talk frankly about it to the person with whom you share your life. Things are bad enough without that additional burden.

Can you find someone who will be able let both of you express that saddness without patting you both on the head with reflex "there there" responses?

ozij wrote:Questions you don't have to reply to, but do give them a thought: Is your husband a person who prefers a life of denial?

Do you know my husband? LOL. He is definitely an "ignore it and it will go away" type person.

Don't get me wrong - he has been fantastic to me through all of this. He gets it more than anyone in my life. But he comes from a place of "it is what it is and we'll just deal with it" and that's what he tries to do. He doesn't like to dwell on it much. And when it comes to dealing with all these people, he leaves it totally up to me.

I found out yesterday that yet another SNAFU -- the sleep neurologist just got my records yesterday. My experience has been that it is typically about 30 days for them to review them and then IF he feels he can do something, it's at least 2 months (or more) before he will have any appointments for new patients.

It was suggested to me mid June that an evaluation by a sleep neurologist was in order, this after I spent 2 months playing with meds for RLS because my regular neuro was NOT told that the leg movements were ONLY during REM sleep. And this was after arguing with my pulmo about supine sleeping, which I don't do anyway.

I am really beginning to believe that the medical community sees my name and says "let's see how we can screw with her now!!!" -- it's almost funny. Almost.

My husband "sensed" I was not in a good mood last night and made the mistake of asking me if something was wrong. I went semi nuts and started yelling about all of this, cursing like a sailor and just venting at the top of my lungs (not at him, but to him). He knows how badly I feel and how frustrated I am with all of this.

So, when I said "screw it" again last night and did not use the vent, he didn't say anything. This is what I'm being beaten down to -- a person that really wants to do the right thing (use the equipment) and feel better, but since I can't get the help I need, I'm ready to give up.

And when I get like this, it really upsets my husband because he really can't do anything to make it better. And he and I both know that. All he can do is be supportive, which he always is.

Madalot wrote:... All he can do is be supportive, which he always is. ...

There must be a special place in heaven for all those care givers who remain supportive, no matter how frustrating and frustrated we become.

As usual, you have my empathy. I've been having a few bad nights due to horrible cramping and very low patient triggered breathing. The morning headache is back. Ugh! Hopefully, this is just temporary.

But when the cramps start to hit, I head out of our bedroom. I try not to awaken my wife, but my cries of pain invariably awaken her. It gets HORRIBLE. I really try not to be a burden. I try not to bother her. And I also get depressed and frustrated. So, I do understand.

And like your husband, there are times that all my wife can be is supportive and caring. She is that.

So, let's tip the glass (of water) back for those special saints among us, who care for us and who we are privileged enough to have married. 8^)

Did not read the whole thread. It's been a while since I have been on. I see that CPAP Auctions is closing down immediately.
I have one question for you. Are you dreaming when you sleep? If not you are not hitting REM and have issues to deal with of course.
Murray