Dawg Tired

Nina, I think you are wise to skip the Lupron dose. As far as I have been able to determine the only people who benefit from it (except the manufacturer!) are men who have prostate cancer. For some reason a lot of insurance companies require women to have a 1-yeat trial of it before a hyst. When I worked for an insurance company we started figuring and decided that if the patient wanted the hyst and met criteria to not require that. I don't know what it is now but back then we were paying as high as $1,800 for each injection! It probably is the lupron leaving your system that is triggering your migraine. Night night - hope you manage to sleep through most of it!

Julie, I think you are right. These doctors dismiss us all as "head cases" and we are so exhausted to begin with from fighting for an answer that we are too fatigued to help ourselves when the problem is found. I so much hope that you call Dr Grubbs friend, at least having someone to listen to you might give you the boost you need to go to your spine doctor. I think many of us have had times when we just knew we were going to fall apart but fortunately we had this place to turn to.

What sx were you having that you took the Lupron for? It would depend on that. I got through my last month of nursing school on prednisone due to inflammation from endometriosis. After school I had a hysterectomy and then went a couple years of getting hormones leveled out. PM me if you need.

So sorry to hear of your problems. I hope you find some answers here. This is a very supportive group. Many of us have also been through the wringer trying to get answers. I also have a pacemaker. It didn't give me the "miracle cure" the doctor told me it would.

So glad they found the problem with your little guy. I know it is stressful having a baby in the hospital. My son was in for 5 days one time with RSV and I was SO exhausted! I pray that his recovery continues and you get some good rest.

I have had both of these problems - guess I still do. I also get up many times durin the night and have to go a lot during the day. I also have found that increasing fiber and keeping my GI tract as clear as possible has done more good than anything.

did consult with attorney. I guess my problem is that he has had this case for over a year now, has done all the appeals and is just now telling us he has to have $250 to file the court case. Somehow, I have a difficult time believing he didn't know sooner that he was going to need that money. I mean, he's already getting 40% of whatever I get. And this firm has already charged me $600 for records - the same records, I will add, that I took them when I took them my SSDI case. LAWYERS!!! PHHHTTT!!!!

Well, here's what happened. Sept 2003 I reached the point where I had no dx but I couldn't sit up for even 2 hours so I went on full medical leave. Brfore that I had been on "intermittent" FLMA. In November I became eligible for the LTD. By then I had a dx of NMS but the LTD company had never heard of it.Then out of the blue around the end of January I got a call from them that I had been approved. They paid me back pay from November then I got monthly checks. In February I got a pacemaker but it did not help - I was still having the same fatigue and syncope. The end of May I got a letter and a check: "We are so glad you recieved treatment, the form Dr ****** filled out states you are now ready to go back to work in a sedentary capacity. We are paying your benefit through June as a courtesy". I had never seen the doctor they had sent the form to. I called them and pointed this out but they told me it didn't matter - that was the guidelines they were using. The same law firm is handling this as handled my SSDI so yes, they have pursued all appeals available short of going to court. According to the policy "totally disabled" would include being unable to sit upright more than 2 hours a day. SS guidelines are 6 hours according to my lawyer. How ridiculous can this get?? If you are unable to sit up for 2 hours a day how are you supposed to get TO work? I was having to recline the seat of the car and Hubby was having to take me to and from work. I still have to lie down in the car. The policy also specifically states that they do not have the same disability guidelines that SS has. My employer has pursued this as much as they can, they put pressure on them to start it in the first place. They have been great.

I'm not talking about SSDI - I finally won that - but the disability insurance some of us had through our last employers. I got a call recently from the attorney who is handling this and I'm wondering if it is worth he time and $250 it is going to cost me to file it in federal court. We could sure use the money but then, I have to pay income taxes on it and the lawyer gets 40%.

Mindy, glad to see you back. I understand the computer problems - been going through that myself! Best of luck on the SSD; I've been there, done that.

I was walking 2 miles 5 mornings a week when I got sick. I had been doing that for several months prior to my illness and when the symptoms started I had to cut back until I totally quit. My friend - a cardiac nurse - forbade me to continue. It was frustrating because doctors at first would say, "If you would just EXERCISE you wouldn't be having this problem!" Now I have days when I feel pretty good and I can walk a bit but some days when the walk to the bathroom is a lot. I can pretty consistently do my recumbent bike for 10 min or so. If I push myself though, I will be bedridden again.

I am curious about this too. I had a wrong diagnosis code on my records for years and could not get insurance to cover female issues cue to the diagnosis code. I argued and did everything I could but I was stuck with it. Dr told me he couldn't change it - I never believed him.

Poohbear is right - make copies of those records! I made 6 copies of mine and Hubby's (he had a head injury and I was struggling with NCS so we were both going after SSDI at the same time!). That way everytime we got kicked out to a new doctor or agency I had copies readily available. I am still fighting with LTD. They sent a form to a doctor I had never seen and he signed that I was OK to go back to work. LTD cut off my benefits and I have been struggling for 2 years trying to get them back. If your doctor doesn't want to help with your disability claims then be sure to document everything. Print out info here that points out that Lasix would be an inappropriate med for someone who already has low blood pressure and a fluid deficit. That should at least damage the credibility of a doctor who does that then says you can work.

I also was absent from the forums during any conflicts. That is because I got tired of dealing with my NMS and just had to back away from things for a while. I guess I was also in a POTS hole and decided to rest there for a while. I have another forum I go to that is a women's forum. The ladies there provide a lot of support and it gives me another outlet for myself. Guess I felt like I was getting too narrow and felt like I wanted to branch out a bit. The support here is amazing; but I have dealt with this so much that I feel like I can't let it completely take over. I have had to make some huge changes to my life since I got sick so now I am trying to put myself back together and getting a "social life"; even a cyber social life is, I feel, a step in that direction.

PCP EP Went to Neurologist once... He told me I was nuts. So I won't count him! I suppose I could say I have an Gyn, my niece married him and once when I was in for one of "those" exams I was doing fine until he said, (while looking "down there" with speculum in place) "Aunt Gayla, I haven't seen you since your wedding!" OK, my sisters and I had all developed endometrial cancer so we were trying to all stay with the same doctor - but NO ONE who is looking down there should address you as "Aunt"!!!! Fortunately, since my hysterectomy I haven't needed his professional services. I wouldn't have the EP but he has to keep track of this **** pacemaker. But he's a nice guy.

I'm like Nina... Gotta have my AM coffee. I buy beans and grind it every am. Tha "canned" coffee has a lot of impurities in it - leaves, sticks and things like that. All those cause indigestion so I guess I'm a coffee "purist". It's the only med that works for me without being overkill. If we are traveling and I miss my coffee it throws me off for several days. TV dinners - nice high sodium; and I am prety much unable to cook! Love saltines for a snack. Dates are high in fiber and more palatable to me than prunes. Wal-Mart has GREAT rice pudding in the dairy case - it's near the yogurt - easy on the tummy.

I have been married for almost 6 years. When we married Hubby was the sick one - he has a head injury from a plane crash in 1990. As I got sick he has been there for me. I have gone from being the breadwinner to being the sick one. He has been the greatest! Now we are both home all the time - have been for 2 years now. Intimacy?? We are usually both too tired! Cooking? If you can't do it in a microwave than forget it! Support group? Great idea - I know that not everyone is as fortunate as I am.

Florineff blew me up like a balloon! 16 pounds in 4 days. I took myself off of it. Zoloft, however, has a side effect of supressing the appetite so being hungry and having a weight gain is not unheard of. This side effect doesn't happen with everyone - wish it did - I'd try it myself! I have no idea how long it will last. It seems to me like it takes about 6 weeks for it to get into your system at a therapeutic level so it might take that long or longer to get out.

Hi Carmen! Welcome to the board. I have tachy-brady and NCS and OI. No MVP. I couldn't tolerate Florineff or Proamitine. I, too was working toward a degree in psychology and had to drop out. Now I am having a "good" day if I can manage to take care of myself. This place is the best, the pinnacle, the nadir, the top of the line in support. I have had weeks when I couldn't talk to anyone else and these great people were here to provide support.

I, too, am SO sorry about your scholarship. Like some of the rest here - I've had the struggle for education. I also can fully appreciate the fear you have of getting stuck with the diagnosis of depression on your medical chart; it literally took me MONTHS at the front end of this stuff to convince my doctor that I wasn't just depressed. He was so bad at "demanding" I was depressed he actually had me in tears of frustration - then he would look at me smugly and walk out. Does the UK have any student loan programs that you qualify for? At least for your first semester you might look into that. When you show yourself to be the bright and shining star we know you are then perhaps scholarships will come your way. In the meantime we are thinking about you and praying for you. "Endeavor to persevere!"

I had major edema - I gained 16 pounds in 4 days - I actually gurgled when I talked! Complained to Dr and was told, "Keep taking it for at least a month to let your body get used to it." !!! I guess If I died of CHF he wouldn't have to deal with me?? It also snt my BP all over the place - mainly way too high. Needless to say, I took myself off of it. And moved 5 states away from that doctor!

I love flylady, I even bought her book. She really helps - its surprising how much the baby steps can help. But we have to keep things in perspective and do what we can. Unlike other sites/books at least she has a theory of "do what you can" and doesn't try to guilt us into doing anything we can't. We have a REAL mess... They came to put in the cemtral heat/air and now I feel knee-deep in plaster dust! Like I needed that...

I quit driving back in 2002 because on 2 occasions I got lost driving home from work. The scariest episode I have ever had was the morning I woke up and didn't know where I was. I also didn't know who that was in bed with me - luckily Hubbie slept through this episode. That morning I was in tears and SO scared. I now know why people with amnesia get lost for years at a time. If I had been able to find clothes I probably would have left the house because I was so extremely frightened. I still lose blocks of time but just short periods, maybe 1-2 minute intervals.

I had to completely quit working Sept 11, 2002. I had been getting worse and worse, Dh was having to drive me to work because I had to quit driving in about June of that year but my last day I made it in and managed to work for about an hour and a half until I realized I couldn't sit up any more.

1. Yes, actually, I have NCS but I had problems with PVC's, dizziness, fatigue for about 3 years before the dx. 2. Oh yeah! 3. Sometimes I will go a few days at a time where I don't notice them but usually I have several bouts a day - especially during the night - when they are really pronounced. 4. Nope. I too was a nurse working in a clinic for an internist. The NMS came on about 2 years later while working for an insurance company.