morgan617

As always, well said doctorguest! Linda, my son has panic disorder and this has caused some problems with agoraphobia, just not as severe as yours. He had resisted treatment for quite awhile, but is now fully invested in both meds and psych treatment. He has found an excellent therapist, which can make all the difference. His is due, in large part, to his physical problems, they will never go away and his health problems are progressive, he will not go into any remissions and will never get better, only worse, and will always have restrictions. But through therapy and meds, he has actually improved a lot on the emotional end of this, as opposed to getting worse, as his body does. So I absolutley KNOW that these things can get much better, but they must be treated, like any illness. His dad and I plan on going with him to family therapy to help us all cope with illnesses and learn how to not feed into his fears. We want to protect him and sometimes make poor choices out of a misguided sense of love or "doing whatever helps" him cope. We need to learn how to help him, even though it may be difficult. I think your husband needs this type of guidence also. Nothing is more painful than watching someone you love suffer, but we can't allow that to make it worse, by co dependence. Doctorguest is correct, this is a lot of work, and it takes perseverence, but every every small positive step feels like a huge victory. Good luck sweetie. (btw DG, using syncope and paralysis interchangeably got an appointment cancellation for me with an expert in the field, so I'm glad you mentioned that) morgan

I agree with Nina, I don't find it unreasonable to be hesitant or fearful of leaving the house, when you know you could get sick and no one would know what to do. It's kind of the reality of our situations. I always get stressed when leaving, even though i am never alone, because i can't drive and have to use a wheelchair. So even though someone is with me, i still get fearful something might happen. I don't think of it as a phobia at all. Also not saying you can't have one, just that there is a difference. I just make sure i have all the little things i need. this is where medic alert bracelets or necklaces come in handy and stuff. Sometimes just the stress of going somewhere can affect me, so i might take an extra dose of preventative med or something. whatever gets you out there. And sometimes, I just decide it's not worth the stress. The next time, I buck up and do it. Learning how to prepare for an episode, or doing something that might help prevent them goes a long way to help overcome or at least helps you cope with the anxiety of the 'what ifs". Therapy is always a plus in this too....morgan Just read your post...so sorry sweetie you have this much emotional pain. Agoraphobia can be improved. How does your husband feel about this? Is he supportive in a way that helps or makes you even more dependent? I'm sure if he didn't allow this, you would feel very betrayed, but that wouldn't be the case. I would recommend that he join you in therapy so he can also help you overcome this disabling affliction. hugs...morgan

Congratulations Dawn, what a big sigh of relief.....and good luck missy fishy! morgan

They have injections for your butt. I used to get them and the only side effect of them was I got a little black circle where they gave them, but they were sure a whole lot easier on every thing else, no side effects at all.....you might bring this up with your doctor....morgan

Well, sweetie, they used to believe that these drugs should only be used short term, but that thinking has been changed dramatically. If you have severe reflux and are not a candidate for surgery to repair it (we are going through this with our son and I have gone through it too) for instance , if you have slow gastric emptying, the surgery is contraindicated, or you have been checked for H Pylori and it's negative, the best they can do is meds. If you have had H Pylori, make sure they get a biopsy from your gut and not your blood. Once you have had it, it will always show positive in your blood. The long term use of meds versus just dealing with it shows, that the meds are far more benign. Long term reflux puts you at risk for a condition called Barrett's esophagus, which greatly increases your risks of esophageal cancer. The lining of your stomach, which is quite different than the lining of your esophagus, will start to grow up into the esophagus in an effort to protect it. These cells are abnormal, however, and seldom, if ever go away once there. There is something like a 40% risk of them becoming far more dangerous, than just abnormal. I have been on Zantac, Prilosec and now prevacid for 20 years with no long term effects. My son takes Nexium twice a day, plus pepcid. And Rolaids. As far as your iron, you are correct, this doesn't help your gut. Have they given you the slow release type of iron? And you take it with food? And take it at totally different times than the iron? The gut pills should be taken on an empty stomach and the iron on a full one, which should assure that they don't interact or affect the absorption. I don't think jake is going be a candidate for surgery, but trust me, you would be prying his Nexium from his cold dead fingers, before he ever gives it up....sorry, this isn't more helpful, or positive. My doctor says, he believes some people just have a bacteria that hasn't been discovered, or those valves that are supposed to shut tight just don't. The surgery has it's share of complications. They wrap the upper stomach around the lower esophagus. It can be a miracle or a nightmare for people. You should talk to your doctor about any other options you might have, but as I said, the thinking about these meds being short term is pretty obsolete. Good luck sweetie! morgan

Thank you Nina, it helps a bit to be able to send condolences. I am still in shock and Mary will definitely be missed by all of us....morgan

Oh, I am so very sorry to hear this unexpected and horrible news. I hope there is a way to send our condolences...My prayers and thoughts go out to her family and loved ones, she will be missed....morgan

Thanks Chrissy, you sound like a wonderful young lady! We will be working on a few diagnostic things from the looks of it. The input we get from the young people with these disorders is so helpful to the parents! (Especially when dealing with a boy as opposed to a girl... ) you are a sweetie! morgan

well missy girl, we must have some way to keep things exciting in our sometimes boring lives, but don't go overboard! Or, jump out of your bowl, without someone there to slip you back in! 2000 cc's. I would have exploded.

Although all sites may have their ups and downs, this site has remained a safe and steady light in the darkness. An environment, where we can act like the adults we are, voice our opinions, as long as we do not cause pain, and feel like people really care. I can go away from here for awhile, but always feel welcome when I come back. Like coming home after a hard trip. I appreciate the moderators who always keep their heads on, even when frustrated to all ends. I appreciate this site and haven and all on here, we are a large family and you can never receive too much love or support! Thanks to all who contribute and support! morgan

Amen to that, Mary!!!! morgan

I have wanted to see him for a long while, but the wait is long and I am all the way across the states. I've also had ablation and now have that pacer, so not sure what could be done at this point. I am glad you had a good visit and felt validated. He has written some wonderful stories too, (they all make me cry). He sounds like a very special doctor and man. morgan

I just found out my son, who is all of 25, has precancerous lesions all over his esophagus. It always seems to feel much worse when it's your child doesn't it? He is hyperparathroid too, so I am beginning to suspect a POTS component, however am not sure I want to put him through that stuff in this area....

I think when something is not well known, many terms are used interchangeably and then incorrectly. My paralysis has been noted as syncope and vice versa. So it wouldn't surprise me to hear that an incorrect term was used. I believe even some of the specialists have a running debate on certain terms at times....I saw that in a couple of articles I read by the doctors anyway, maybe it's resolved.....

If they attempt to pressure you about the evaluation, I would suggest you tell them you will be happy to have one done after mayo has ruled out everything else. That way you leave the door open to their nasty little suggestion, and remind them it's prudent to rule out any physical problems before going straight to psych ones. Psych evals should be the last order of business, not the first one you jump to when you are unsure of what's going on. I wasn't aware you needed a referral to mayo, by the way. Is that something new, or am I on a different planet here? I did get a letter of rejection and my doctor called them and they still refused, but it had nothing to do with a referral. I actually have no idea what it had to do with.

Hi Valentine, I have found eating a large meal will get me every time, as will not eating at all. I eat frequent (about every two hours) small meals or snacks that have a good combo of carbs and protein and that seems to help a lot. When I was first diagnosed, I lost over 50 pounds, and have never gained it back. It's a thin line sometimes between what will help and what will exacerbate. Good luck! morgan

mine is typically chest heaviness, like an elephant, hard to breathe, arrythmias and a really full feeling in my throat. My neck veins will bulge like crazy....morgan

Linda, I didn't have a typical EMG, but was given what's called E stim for the problem you are describing. The switch in your brain that tells your muscles what to do isn't connecting, for what ever reason, with those muscles. When I was tested, she did the strength stuff and even though i was weak, the thing that grabbed her was that my arms and legs jerk as I'm trying to hold them. For instance, she tells me not to let her pull my arm down. She can, because i'm very weak, but in my effort not to let her do it, my arms make little tiny jerking motions. It's not a smooth pull down or me just being able to hold me arm in place. She said this was neuro 101. It is very abnormal, however, I have done it as long as I can remember. She said the E stim would reconnect these "synapses" or whatever. That didn't happen, because I kept paralyzing before the treatment was over. (I thought it was a bogus thing and she was trying to trick me, but not so) What it did show, is that before I paralyze it takes about 20 mghzt or what ever to cause my muscles to contact, HARD. When I am paralyzed, they don't react at all, at 95 mghzt. So we didn't didn't get that connection fixed, but it did prove that i have a serious "very real" medical problem. This may be what he is talking about. It will be interesting to see what your muscles do with stim. Stay the same, go flaccid, or go rigid. My hands and face and feet will go rigid, but mostly I go flaccid. Hope that helps.... This can cause a lot of ans problems.....

Linda, here is a link you might find interesting....the pancakes and stiffness are what got me thinking...read some of it and see what you think....look at the myotonia section.....I cry all the time and never know why, so don't feel like the lone ranger....morgan I will pm you the link Linda....I'm not sure it's okay to just post it....

Nolie, I have been in several and find they have just not worked out well. I have never found one that's well moderated, however, I haven't loked in awhile. I think someone may have posted a link here awhile back, you may want to look in archives. The ones I found were not informative, it was more like who was on the most drugs and who had fallen off their chair lately. I was quite taken aback by the tones. I am hoping that some years later, there are better sites out there...good luck sweetie....morgan

My BP runs very high. Look under baroreflex and you will find that a portion of us do run high BP's. Good luck!

The only thing I can say is, there is more and more irrefutable evidence that Fibro is a very real disorder, and we can hope, with that knowledge, will come more understanding. I'm waiting for the day they change that darn CFS to something more appropriate! It doesn't rain, but that it pors sometimes. I am sorry you are going through this....

How many times has it shown as high and how high is high? Sometimes it's just a fluky thing, unless he has several done at different times of the day over a period of time. You can keep a log...say for two weeks. Take his BP every day, at different times, under different circumstances. Say, after a meal, when he first wakes up, after he's been active, after he's been resting. You might want to get ortho static ones too. If he is high more than he's lower, then he needs to find out what's going on. Sometimes you find it's just a bit bouncier than other peoples, more reactive to stressors and things. Good luck. morgan

Well Missy girl, welcome back, good to see your own typing....love you sweetie....mamamorgan

I've had fibro for 32 years. It waxes and wanes. I took something to help with the disruptive sleep, a long time ago, but I have never taken anything else for it. The poor sleep patterns (typically a lot of alpha waves spiking in your deepest sleep) won't allow your muscles to get the much needed rest and repair they need, so they have much more of tendency for injury. They are never relaxed and rested. I just learned to deal with it. It's worse for some than others, I have days where it takes all I've got to get around, but the alternative is lying like a veg on my couch from pain meds, which only mask symptoms, it's not like they cure it. However, some people do much better on them. NSAIDS are commonly prescribed for it. Cymbalta is the new "miracle" drug of the moment. I can't take anti depressants, they cause cardiac problems with me. It either seems to drastically improve people or they don't do well at all. Massage, heat or ice, whichever feels best helps me. ( I use heat, heating pads are my life savers) I used to get a lot of massage and that was the best thing I did for it, but some people say it hurts. I found it hurt, but I felt better afterwards. Typically they say 11 of 18 trigger points have to be positive, but I think they are getting away from that. I don't even tell doctors I have it anymore, because where I live, there is such ignorance and such a stigma about it. Like everything we have I guess. You typically get the diagnosis of fibro when everything else comes back negative or borderline. Fibro doesn't usually cause swelling or permanent damage, however they believe we get constant tiny muscle tears from exertion that doesn't bother normal people. I have no idea what P factor is. I get a lot of tendonitis from it. In my shoulders, elbows, wrists and stuff, but it doesn't cause you to develop deformities like RA does. It doesn't elevate your sed rate, RA factors are negative. My ANA has been positive forever, but they just ignore it. I've had corisone shots in just about every joint and more than once. Those also work really well for me, and I don't think they are any more painful than any other kind of injection. No worse than a shot in the buttinski.... That's about it....good luck with your tests sweetie...morgan