Mary P

I'm so sorry , Poppet. I think a lot of us here are in the same boat. When I told a friend that a 4th N told me that there was nothing to be done to help me, she asked, "then why do you still seek help"? I said, "I had to try one more time but no more".

At 5' 6'', I realize I'm not anywhere close to 6 feet. However, at my height I find that the Jobst thigh high really stretch, right up to the crotch area and I feel they'd stretch even more. I'm glad to see this post because I've been wearing 20 - 25 Jobst for 2 1/2 years, getting new ones every 8 months or so. I've never been able to walk or stand very long without my legs getting extremely weak and wobbly and I know I'm about to fall. For the past 2 months this has become worse. I'd like to ask if the next level of compression give more support so I can move around better and longer? Thanks for any response someone may give. Mary P

dsmom, If I were to be told this in a forum situation I'd be freaking way beyond upset. It is up to the doctor to advise a patient of any prognosis. I once advised a nurse sister not to tell a brother that his prostate cancer would spread to his bones and that was a very serious cancer. I told her , "You might as well put a gun to his head and pull the trigger. It's up to his doctor to give him good or bad news".That was 18 years ago and my brother is alive and well today. In Oct 2008,when I was first told that I might have MSA, I joined a forum for that. I immediately got a few replies saying things like, "Poor you. I'm so sorry that you have to be part of this forum", and " My deepest sympathies. This is a horrible disease". I immediately 'signed off for good' because I didn't need to listen to 'doom and gloom'. A few days ago I saw a 3rd neurologist. This is a N of movement disorders who's not completely sure it's MSA and has ordered tons more tests. I wouldn't have wanted to think that I have been dying slowly over the past 15 months had I believed that I really did have MSA. I'm not denying that something is seriously wrong but still, it's up to this new N to give a final diagnosis. He came highly recommended and from all he did for me on my 1st appt, I trust him and know he'll be the one to finally know exactly what's going on. Mary P

Kits, I imagine most of us who belong to the DINET family have encountered this type of medical person at one time or another along our journey. I did and, encouraged by my GP and a son, I 'fumed' for only one very short day, then put his ignorance and lack of caring behind me. I knew there'd be someone else out there who'd be the opposite to him, and there was. So, don't give up. We have to do our best to put this type of doctor out of our mind, because if we don't we only hurt ourselves. The would be doc couldn't care less how he/she inflicts pain and distress on a vulnerable and sick person. I guess your post has just reminded me of what I went through once because I find myself 'fuming' again, this time at what you've been through. Take care and keep looking for a kinder more knowledgeable doctor. He/she will be there for you. Mary P

I couldn't be without mine. I can't walk very far even with my walker so it's a necessary parking item for me. I had no problem having my doctor sign for it. I would recommend that anyone who feels she/he will benefit fom one, ask your doctor to sign the form. Mary P

Hello everyone, Thanks Brye and potsgirl. I'll think of you as I try to get down that 'god-awful' cleanser. I've thrown up on other occasions but read where one gal drank it using a straw and put the straw close to her throat so she didn't have to taste it so much. I'm going to try this but will first practice with gatorade.My son gave me a cleanser that takes off those stickers that sometimes adhere so completely to new items, i.e., dishes, and I can't use it because it smells exactly like that stuff we have to drink for a colonos. It nauseates me. Potsgirl, did you mean that the hospital supply gatorade for you or did you take it with you? I'd like if they could give me gatorade through an I V. Then I'd feel more relaxed. ha ha Can anyone tell me if I'll be allowed to wear my support hose during the procedure? I can't safely get out of bed and walk without first exercising my legs and then putting on my hose. Mary P

Thanks for this timely post, Jana. I had a great deal of bleeding last May and during a few hours in emergency was told it was hemorroids. Because I was in the midst of a move, I couldn't see the gastroenterologist. In the past month I've had problems with loose BMs and once in a while, diarrhea. I had tests for this today and got a call from the GP's office that she has made an appt with a new gastro in this new city. He was recommended to me by a niece so I feel good about him and all the write-ups about him are great. I'm pleased that things are moving so quickly but am scared at the same time. Past colonoscopies were unpleasant except for the last one in 2005 when I had to have a CT colonosc because the gastro said it wasn't safe for me to have a regular colonosc. However, my research shows that if something shows up that needs to be removed, then a normal colonos has to be done anyway. More scary than ever. Compounding this scare is all the problems we deal with due to Dysauronomia. For one thing I need to drink tons , as we all do, but I've read where we can't drink anything for 6 to 8 hours before the test. I know from past experiences that this could cause me to faint. More scary, but I have to have it done. Can anyone tell or assure me that all will be okay. I've even decided that I have to update my Will and write down what I want for my funeral. I've intended to do this for the past 7 months but never felt able. Thanks for any advice or reassurance that anyone may be able to give to me. Believe me, It will be most appreciated. Mary P

futurehope, Thank you for responding. I 'll tell my new doc that I'd feel better with the urogynecologist and ask her why she changed her mind about whom I should see. I'm scared about the whole situation. I dread all surgeries because I'm in such a weakened state. Mary P

I check in a couple of times a week but really don't have much energy to think let alone make a post. At any rate I usually find an answer to something that's bothering me, thanks to all you wonderful people on DINET. I still have no definite diagnosis and will see, on Feb.9th, 2010, after a year's wait, a 4th neurologist. I'm hoping he'll be the one who can help yet I'm also afraid that this will be another disappointment. There is something now that I'm sure some if not several of you will have experienced. I was scheduled for a uro dynamics test but then moved to a new city. So I cancelled it and have seen a new doc. She said she'd refer me to a 'uro-gyno' specialist and I finally have an appt but with a gyno only, who does minor gyno surgery. My former doc never mentioned surgery and neither did my new doc. I did a google search for uro dynamics test and it sounds most unpleasant. I'm totally puzzled because my problem is that if I don't get to a bathroom as soon as I get the urge to pee, it just flows out. And you all know how much we have to drink. At any rate, can anyone tell me if I do need to see this gyno? I have to see my new doc to ask her why I'm not seeing the ur0-gyno specialist she first talked about, but it would be nice to have some info to 'take along with me'. Thanks so much for any help you may be able to give. Mary P

A happy Sunday to all, I've just asked my new doc to refer me to a gastroenterologist who was recommended by a niece. I'm so glad to have read all your comments because I had no idea what to expect except that I'm due for a colonoscopy. Now I wonder what other news may be in store for me. Thank goodness for all you wonderful friends on DINET! One of the disillusioning aspects of my journey is that I've had to find out about every specialist I've seen, mainly from friends, and then ask my doctor to refer me. My new doc, at least to date, is no more 'with it' than the last. She hadn't even read the 2 years of records that she wanted from my previous doctor. I'll be going to a teaching hospital and this makes me feel confident that something will be done. I hope the gastro will refer me to a neuro gastro or any other specialist if he discovers this is necessary. I'm scared of what's ahead but also very grateful for all your posts. Thanks to all you who could teach our GPs a great deal if they'd only believe and listen. Mary P

I've been taking midodrine since July, 2008. I began with 5 mg/day and within a month had worked up to 10mg/3x/day. I don't remember when the chills began but I usually don't get them until after the last 10mg. They subside after the effects of that last dose has worn off. I also have had a very itchy scalp and have lost hair although my hair dresser says it's still quite thick. At first I thought I'd ever get used to the itching, but like everything else, I did. I'm very fortunate and am not on any other med. Mary P

YOu mention you were on a low dose of mestinon - what was the dose? It could be that you need to start even lower and build up. I take the pediatric version which is a liquid so I can do very small dose changes. I am currently almost at 24mg 3/day but I started at 10mg/day. I began with only 5 mg once a day and couldn't tolerate that, so the second time around I took only 2 1/2 mg once a day but couldn't tolerate that either. It's great to hear that you're up to 24 mg/day. I hope this means you feel a lot stronger than when you began the mestinon. I'll mention the pediatric version to the new neurologist and see what he says. Thanks for your response. Mary P

I'm so sorry to read about your daughter's poor health. It makes me feel like I'm actually a healthy person. I can relate to some of what you've written and can say for certain that Mestinon gave me diarrhea, even at a very low dosage. I was quite alarmed at first so I went off the Mestinon for 2 weeks and everything returned to normal again as regards BMs. I mentioned the diarrhea to the neurologist who had prescribed the Mestinon and he was quite surprised, saying no other patient had mentioned this problem to him. So I decided to try the Mestinon again but that same day the diarrhea returned and at that point I knew that it wasn't for my system. I'm relating my experience with Mestinon in case you might want to mention it to your doctor. I'm sure I can't be the only person in the world who was effected as I was. I should also say that I had a brain MRI to check for Shy Drager. The Neurologist had told me that SD may not show up on the MRI but that didn't mean it wasn't present. We left it at that because at that point I didn't even know what to say or ask. At any rate the MRI didn't show any sign of SD but I don't know what that's supposed to mean now. I have moved to another city and am waiting to see another Neurologist to see what's what and hopefully get answers from him. Wishing you and your daughter much sucess in finding all the 'right' doctors, answers and treatments that will allow her to lead a healthy life and bring you both peace of mind. Keep trying. I sometimes watch a TV program called 'Mystery Diagnosis' and most often it is the patient who, after suffering numerous years of wong diagnosis and treatments, and through prolonged and determined research, finds an answer for themselves. Not all of us can be so lucky, but don't give up. Your daughter is so very young. Kind regards, Mary P

What type of compression do you all use ? Hi Mae, At the moment I wear 15-20 compression. That's not too tight at all but they help me and I don't feel squeezed to death. I'll soon try the next compression, I think it's 20-25. I've found it best to move up gradually...because of the squeezing. I can't wear the panty type because I can't even breathe with these. We're all different so I wish you luck in finding what's best for you. Since these hose can't be returned, I'd suggest that you begin with the less tight ones. That's what my pharmacist recommended. Also, the different brands in the same compression can feel very different. I bought some sort of gadget that will help me put on the tighter-type hose. Mary P

Cat Lady, I don't think my doctor is at all aware of the kidney disease. I've had 3 tests since I began Midodrine in Oct. 2008. She has never mentioned the kd. I know about it because I always ask for a copy of each test. She really doesn't care and says she knows nothing about any type of autonomic problems and doesn't try to learn. It was the N who looked at the test results and said I should be seeing a nephrologist. I always have to ask my doc for the tests I know I should be having. She'll order the tests but that's that as far vas she is concerned. (I can't change docs here in my town, nor anywhere else in Canada that I know of. I'm moving in a month to a large city and have to find a new doctor. It's extremely difficult in Canada to do this but I know a couple of people whom I hope will help me. Although my present doc has done nothing whatsoever to help I can only hope that any new doc will be a caring one. I didn't get to my pharmacist today but hope to do so tomorrow. I'll write about this a.s.a.p. I already visit the bathroom 2-3-4 times a day, #2, and I surely do hope that this doesn't get any worse or I'll be afraid to leave my home. IF the pharmacist gives me the go-ahead to try mestinon and there is any problem, the N told me to call him anytime. Bshert My muscle problems are in my legs and arms, back and neck, etc. so generally speaking I get really weak all over with just a little exertion. Having heard of your experience I actually hope to be able to take the mesitonin and then see improvement in these areas just as it helped you with gastrointestinal problems. I'll keep in touch. Mary P

A recharge cord!! That would be the best med ever!! I'd love to feel good for even one entire day and not have to suffer for it the next day or two. I've never learned how much is too much. On a fairly good day I just want to keep doing what I want to do. Not good! Mary P

I also hate taking any med. I was prescribed mestinon last Wed by a N, 30 mg 3xday for one week and then 60 mg 3x/day after that. I have hesitated to begin it because I have moderate kidney disease and, if I understand correctly, all the literature says that with kd, I shouldn't be taking this med. I'm going to ask my pharmacist tomorrow as she seems to be much more knowledgeable than any dr I've seen. She doesn't know about the kd but the N does. I wonder why he would prescribe it knowing this? In the meantime, does anyone here have any advice? Has anyone had a similar concern? Is mesitonin used to help muscles work more efficiently? My N told me this but also said that my BP would rise higher on standing and I would therefore be able to stand a bit longer. Right now I can walk only a very short distance and can't really stand still at all. Is anyone taking this med for more muscle strength or to increase BP so you can stand for a longer period of time? Thanks for any advice/help. I'm also very nervous about taking this med. Mary P

Hi Maggie, I was dx in 2007 at age 69 and 8 months with orthostatic hypotension, but had been feeling lousy for a few years before that. Then at age 70 with Parkinson's. As the saying goes, "You're never too old to.....!" Try to keep your spirits up. God Bless. Mary P

I'm so sorry for your loss. A pet is like another child, and I understand what you're going through. You will miss your dog tremendously so take especially good care of yourself at this time. Let others pamper you. Mary P

Hi to you both, Michelle and Ricky, I've been taking Midodrine since early August, 2008. I began with 2.5 mg 2x/day and very gradually worked up to 10 mg 3x/day, 8:30 a.m., 12:30 a.m, and 4:30p.m. I chose my own best times to take it. I go to bed at 11:00 so it's well out of my system by then. Still, I absolutely have to lie down a few times a day and the M has never caused any problems as regards BP and HR, even should I lie on my back for a while. Once I began to take 10 mg 3x/day I began to get chills and an itchy scalp after the second dosage. I wish you both all the best in dealing with this chronic condition. Just don't give up. It sounds like you, Ricky, have a great attitude about heow you're dealing with this. Even when you, Michelle, are going through a rough patch, there'll always be that ray of sunshine, a few or even several hours of feeling uplifted somewhere down the line. I hope you have lots of support from doctors, other family and friends. Mary P

Hi Ernie, I can't believe what you had to go through! That's shameful! I wish you all the best and that the benefit comes through for a truly deserving person. I was happy to hear that the man who questioned you was respectful and kind. That session must have really been hard on you in every way, emotionally, physically, etc. You're a real trooper! I appreciate what I read as a good sense of humour....."I should find out.....if I'm disabled". Good for you! It's not always easy to keep a sense of humour but it gave me a chuckle. I hope I'm not way off track with this. If I am, I apologize to you. I've been wondering if you got a bed that allows you to sleep easily and without pain. Mary P

Just wondering if all who have replied to this post take 10mg each time you take a dose of M? I take 10 mg at 8:30, 12:30, and 4:30. Then by 8:30 p.m. I'm starting to go downhill again. I was told not to take any more than the 30 mg/day. I have terrible mornings and would love to take 10 mg, or whatever the dr would allow, at 4:30 a.m. as I'm always up to the bathroom at that time. Maybe this would give me a better start to the day. I have no choice but to lie down at leaset 2x/day in order to continue functioning and have never had a problem with supine hypotension. Then again, my problen was seriosly low BP and the M has brought that up to a normal reading. Thank you to all for the great info each of you provides. Mary P

Hi Summer, I was diagnosed at age 69, but I'd felt very poorly for a number of years before that. I'm still seeking what I hope to be a definite answer to my failing health when I see a 4th N in June. This N is a Movement Disorder specialist. Mary P

I'm glad to see this post because I was going to ask if anyone had any problem with hair loss due to midodrine. I do and it has to be the midodrine because of the constant itching. The only time I don't itch is during the night since the last dose has worn off by 8:30 p.m. The only other meds I take are fosomax and a sleeping pill. I began taking Midodrine 9 months ago, beginning with 2.5 mg/day and gradually increased this to 10mg 3x/day I also have a lot of chills which begin after the second dose, but like the scalp itch, stop by 8:30. Thank goodness for the reprieve during the night. I see the N in April and will talk this over and see what he says. I never had a problem with itching or hair loss until I began taking at 7.5 mg 2x/day. I'm glad to have read all your posts because I can take this info when I see the N. I want to specifically ask about the brand name type of midodrine. I'm a senior citizen and the pharmacists always insists that I take the gov't covered generic brand of everything, even though they know that I pay well for my own private drug plan every month. I see another N in June and this doctor was invited by our P D support group to cometo our town. He'll come in April to talk specifically about movement disorders and the drug effects and interactions among people with PAF, Parkinson's and M S A. I'm sure what he says will apply to any of us on this forum, no matter what the syndrome or condition or disease. We may have been diagnosed differently but what we contend with from day to day is very much the same. Mary P

Me too. A friend does all my shopping. Mary P