Mary P

Sunfish, I wish I could take you along with me when I visit a N. I don't even know how you possibly store and then share all that you know. Thanks for this. You must surely be equipped well to challenge and ask questions of all doctors that you see. A N will give a diagnosis and that's that. My doctor knows nothing and so I'm left to do all my own research. This is fine but I'd still like to be able to question each N about the 'why' and 'how' and 'what comes next' etc, etc. of his diagnosis. With your permission, I'd like to take a copy of your post to my MD. I'd also like to take it to the next N I see so I'll have something to ask him. Mary P

I'm sorry, but I already forget your name but nonetheless offer a Warm Welcome to the Newbie who began this post. Talk about brain fog! Please forgive my bad manners! I haven't been able to read everyone's posts thoroughly, but this is what I've learned so far. I'll have to run a copy and read when my energy builds. I had been poorly for about 2 years but then debilitating fatigue hit me in Feb 2007. I began to keep a very thorough journal of all that was happening to me ans then saw my first N in Dec. 2007. He did a lot of testing, and then using the info I provided, along with the twice daily readings of BP and HR I had kept, he diagnosed PAF with Orthostatic Hypotension and with the likelyhood of Parkinson-like symptoms developing. I then saw a second N who did Autonomic testing in his lab. He told me that I was just a fainter (Even though I hadn't fainted for 50 years), and that I should go home and exercise. Then he wrote to my doctor that I had Neurally Mediated Hypotension. I saw a third N who confirmed the diagnosis of PAF, Aut Failure and probable Parkinson's. BUT, he also thought that I may have MSA. Apparently it can be very difficult to distinguish between Parkinson's and MSA. So, apparently one can have PAF and MSA. I hope not, but we're all different. So, in June I'll see a fourth N, this time a N of Movement Disorders who treats people with Parkinson's and MSA. This 4th N has come highly recommended by several people I've met at a Parkinson's support group. I'm desperate for a definite diagnosis so I can get the proper treatment and perhaps live some sort of half decent life. (1/100 decent life!?) So, I would recommend that you see other Ns to make sure a proper diagnosis has been made and that you get the all-important proper treatment as well. I wish you all the best in your journey. I know that you'll surely get tons of understanding and support from the wonderful people on this forum. Mary P

Hi Maxine, Thanks kindly for your offer to contact you directly. Just now I'm not able to do much of anything. I'm always so exhausted. I misread your initial post and when I responded I had it in my head that a neurosurgeon was best, but now know that you were helped best by the orth guy. I have 3 appointments ahead of me at the moment so will wait until I see my 4th N in June....a movement disorder N. I've been told directly from several of his patients that he's wonderful, and funny. I need a few laughs. I have an MIGB scan coming up soon and can't wait to hear what those results will tell me. I'll be in touch after that. I went to a sleep clinic this past Fri and there was horrible music playing all night long next door in a dental clinic....no one there of course. The technician told me that he has told his boss about it but nothing has been done. The dentist goes to our church so I intend to talk to him personally. I can't wear ear plugs. At any rate I'm anxious to hear the results of this as well. I didn't get to sleep until 3:00 a.m. and was awakened at 6:00 so I could be gone by 6:30. There were 5 other clients there but not a snore or anything but the cra--y music. Take the best care you can. Mary P.

Hi Ernie, I'm guessing that you're talking about a disability pension. I don't get one but I did recently apply for the amount of $ that the Fed. Gov't allows persons with a disability at income tax time. What happens is this. If I'm accepted for this, the gov't will allow me to deduct just over $7000. from the amount I'd I owe them. I had my doc fill out the necessary info but I knew I'd never get the allowance with what she said. After more than a year and with Neuro reports she just doesn't have a clue. I threw her form away and had the therapist who comes to my home every second week fill in another. I feel sure that she did a good job and I sent copies of the Ns reports as well. Could you do this sort of thing....bring along this type of report to support what you need to say? Just an idea. I'm new to this sort of claim. Wishing you success and all the best. I'm sure that everyone on this DINET site know that you deserve what you have to do to get the exrtension on your pension. Mary P

First I'd like to say that I'm sorry for all you're going through. You are indeed a really strong woman. I don't have that same strength at all. Your post really intrigued and interested me. After reading it, I did a lot of research on cervical/cranial instability, pannus growth, odontoid bone, etc. I'm wondering if, besides the pain, what else you experience, i.e., visual disturbances, vertigo, nausea, weakness, etc? Does looking up or down or sideways cause any of, or perhaps even more, than the symptoms I've mentioned. Do you have pain all over your body? It's just that I think that I may at least have some sort of CCI. Something crazy happened to me a few days ago. I woke up on my back....a no no for me. Instead of turning on my side, I turned my head sharply to the left to look at the time on a digital clock. My eyes seemed to bobble about and the numbers on the clock kept sliding from side to side I became nauseated, etc, etc. It all began in 1982 when I fell and smashed the back of my head on ice and got a concussion. Ever since then I've had these problems off and on, but none as bad and as lasting as this recent one. I have never been able to lie on my back for very long without getting severe pain in the back of my head but nowhere else. As with everything else in my life, my doctor paid no attention except to say it was either age or depression. I found one picture of the odontoid bone but can't figure out exactly where it is. When I first fell and got a concussion, an ENT doctor told me that spurs on the upper vertebrae might be brushing against the ?cord, but my doctor dismissed this, saying there was nothing in the x-ray to confirm this. I was beginning to think that an MRI might point to the problem and it could be fixed, just like that. However, after I read your post, I realize that this wouldn't show anything anyhow. I'm wondering if a nerosurgeon might be of some help, at least point out what the problem is. What do you think? You are really knowledgeable and I'd love to hear any thoughts you may have as regards my situation. Thank you kindly for this. Mary P

Hollie, I'd also like to suggest that right there and then you stand up for yourself. Don't take any more c--p from these ??! There really is no word to describe them but they're out there in great abundance, to destroy the spirit of anyone who'll let them get away with their inability to show some human kindness to their fellow humans. You are very brave. I'd never be going back again. No one would ever want you to so. Bravo for you Mighty mouse! We all need to stand up to these insensitive and rude Docs, etc. I wonder what makes them this way?? I don't know about patient advocates but I must ask my own doc when I see her in a few days. From now on I'll 'say it like it is' if I ever again encounter the emotionally abusive behaviour I endured on a visit to one Neuro When I was treated like a nobody by this Neuro last year, I wrote to the doc who I thought was supposed to 'be on the patient's side'. Instead I got a letter from this doc saying that he had investigated the matter concerning my visit to the neuro and there was nothing wrong with what this guy said or did, that he was always does his best for every patient he sees. I had mentioned how badly I'd been treated, abused really, but the Neuro denied all he had said to make me feel diminished and worthless. I thought to myself, "Of course, he'd deny his abusive behaviour, just like a criminal will not admit to any wrongdoing"! I was stupid to think that any of this Neuro's colleagues would stand up for me! So, once again with this letter, I was made to feel diminished and worthless all over again. It was the first letter I've ever written and it will be the last. Instead I'll speak out, right on the spot so-to-speak, and I hope there'll be others there to listen and hear.

I want to tell you about a Neurologist who is the kind of Doctor we'd all love to have. Serious adverse health conditions, even a double lung transplant, have made this N decide to retire. His son, who worked along side his dad for years at his PD Clinic, has taken over the practice. Parkinson patients suffer many of the same conditions as we do. A brother of mine, who is being treated by the son, says that both dad and son are men to be admired among all members of the medical profession and by all patients who want/need to be believed, who look for support and compassion. The dad is certainly qualified to speak from the perspective of a patient. He says that he usually experienced warmth, compassion and encouragement but also met doctors who were *blunt, cold and upsetting*. He says how it's so nice to hear your doctor say, "We will work this out together". It's nice to hear at the end of a visit, "Is there anything else you want to talk about"? I have been totally demoralized by one N and then met another who was wonderfully caring and respectful. I know many of you have had similar experiences. The dad is a great believer in optimism, living with our illness and its limitations and getting on with life. I would love to practise this from day to day but I have to be honest and say that this is really difficult for me and I wonder if I'll ever get there. I still need a lot of help. I'm so impressed with the honesty and integrity of this respected N that I just wanted to share. Wishing you the very best experiences with whatever doctor/s you see. If these people only understood the harm they do when they are **blunt, cold and upsetting*. Mary P

Hi, I've discovered that mp GP han't always been truthful when I've asked about blood test results. So, last time I asked for a copy to take to the Neurologist I would soon see. Then she did point out two problems but couldn't say what they meant. The Neurologist knew exactly what they meant. From now on I'm going to ask for a copy of every test result. Mary P

We could go on and on about neurodegenerative conditions/syndromes/diseases, etc. How do we even begin to learn or explain the difference between Condition, etc, etc. Try telling someone about Shy Drager or Mulltiple Systm Atrophy with Autonomic Predominance and some Parkinson's symptoms. I simply say, "all my organs are slowly breaking down, and I don't know why. I get tongue tied just trying to get it out of my own mouth. If I say it with an exagerated expression and it becomes a good exercise for facial muscles. Mary P

I raised the head of my bed for a year.....5".....always a poor sleep and always got up with a sore back. Anyhow, after the year was up I had the bricks removed and things have been better. But now, I have a new mattress and take a sleep aid before bed. Forget the name. Have been wondering if I should now have the head of bed raised again, perhaps less than 5". Mary P

Thanks to all for your help. I feel more confident now about getting the 30-40. It seems that all of you get along fine with 30 - 40 so I'll try this. I don't think I'll ever be able to go to the 40-50 because arthritic thumbs will probably make trying to get them on impossible for me. Ernie: Where do you get your custom made hose.? This sounds good to me. I could get much less compression in the belly area. The pressure/squeezing was so bad with just 28 - ?? that I felt that I would faint. I'd have to stop my walk to try to push down the waist band before I could move on. All this in the middle of a sidewalk but we must do what we must do. A pregnant woman's hose sounds good as well. I'll call my pharmacist with your ideas. rqt9191: At present my hose is just 28 - ??, not much compression I guess, and we can buy these at any dept store. As for therapeutic hose, I can only say that when I asked for a hose with more compression, the pharmacist said I'd have to get a prescription to get these. The gov't here in ON requires this. I don't know about other provinces. I live in Canada and was told the same at a health-type store where we can get all sorts of 'stuff' for a health-related problem, i.e., walkers, canes, neck braces, etc, etc. It is a gov't supported store. For example, I got my walker at one such store and I paid 25% whereas the gov't payed 75%. I had to have a physio therapist visit to assess me but it was worth it. At a dept. store I'd have had too pay the full amount.

I shiver for qite a while after taking Midodrine and I've always taken Midodrine not too long before I eat the 3 main meals of the day. However, I never shake. Mary P

Hello to everyone, I'm looking for advice. For 2 years I've been wearing thigh-high support hose. I can't tolerate the panty-type because they squeeze the life out of me. The pharmacist said I'd need a prescription from my GP to get the next level of support which takes me to 'theraputic' hose. She says this type is much harder to get on and is much tighter when on. I'll need a pair of gloves to get them on. What I'd like to know is: "Do I really need the theraputic type or am I just as well off if I buy new support hose more frequently, like every 5-6 months." I have Multiple System Atrophy with Autonomic Predominance and some Parkinson-like symptoms so I'm dealing with a lot. After making an appt to be measured for theraputic stockings, I'm wondering if I really do want to go that route. My GP couldn't answer this and neither could the pharmacist. They said, "It's your choice." They don't know anything about my condition so can't answer my question. I understand this. It's an extremely rare condition. However, for me, this would be like choosing between med A or Med B. I'm not qualified to do this. The theraputic hose is really expensive and I don't want to waste $ if I find I can't wear/tolerate them. If anyone has had any experience with wearing regular support hose and then moving to the theraputic hose, I'd really like to know what this has been like for you. Thank you for any advice or suggestions you can give. Mary P

Flop, Hoping that you're fully recovered a.s.a.p. Hope you have the best of care and caretakers. Sending hugs and prayers your way. mary p

Hi Ernie, My physiotherapist would not use it on my shoulder/rotator cuffs because of irregular heartbeats. She said that the stimulation would be too close to my heart and might set off another round of rapid heartbeat. I wonder if she'd use it , let's say on knees. I do know someone who bought a tens for knee pain, after knee replacements, and has had wonderful results/ relief. A physiotherapist started using it on her in the hospital and her husband bought her one of her own. It cost just over $900. If you do decide to get one, I think you'll get the relief you need. Mary P

Hi Ernie, If the new mattress is still too firm, perhaps a nice 'poofy' all-around cover will help. It has helped me. It has a ort of a quilted pattern., but very fluffy-like. Is the head of your bed raised? I once had bricks put under the top posts of my bed but I found it so uncomfortable that after a year I had them taken away. The bed was so much more comfortable with them gone and I didn't feel like I was bent in half. That situation with the bricks was so uncomfortable and I didn't find any difference in my health. Does your new bed rise gradually? I think you can change as often as necessary until you get one that suits you. Sleep tight. Mary P

I have been diagnosed with : Pure Autonomic Failure, Orthostatic Hypotention, Neurally Mediated Hypotension, Parkinson's, and Multiple System Atrophy. At the moment I am taking only Midodrine and this was after seeing a Neurologist of Movement Disorders. I'm going to seek a second opinion and if the MSA is confirmed, I hope that I won't have to take a lot of other meds. I'm managing fairly well now but if I miss a dose and have to take it an hour later than I should, I'm zonked. Also, if I overdo something, the resulting fatigue is terrible. It's easy to overdo it, even just a 15 minute very slow walk. Mary p

Hi firewatcher, I'm looking for the same kind of help/support. I haven't had surgery but I understand we need some sort of support around the tummy because of the Dysautonomia which causes blood pooling. I haven't been able to tolerate support panty hose because the actual panty part squeezes the life out of me. I become quite breathless and my heart starts to race. I haven't tried anything else because of this but probably need to do so. I now wear support hose to the top of the leg. I'll be looking forward to whatever replies you get. Perhaps we need 'someone in the know' who can measure us properly and accurately. Mary P

Dear Ernie, What an evil excuse for a human being that would take advantage and commit such an abhorent crime on a completely helpless person! I've lost sleep thinking about what you had to endure at the hands of a rapist, and you could do nothing about it. No one can know what you went through and are still going through. I haven't been able to read all the replies but reaching out for help with a women's centre is great. I'm sure they'll advise what else you can do. My first thought was to contact someone you think you can trust at a newspaper in your city, or a TV help line. You don't only need support from a Women's Crisis Centre. You really do need to get the word out that there is a rapist in that hospital. Who knows how many other helpless people he has raped? Perhaps if your rape were to become known by the entire community, something might be done to stop him, arrest and bring him to trial. I think that if an investigative repirter were to start asking questions around the hospital, or jusy outside its doors if this had to be done, would get the ball rolling and eventually the rapist would be caught. He'd be shivering in his shoes if he were to know that he were soon to be found out. I'm suggesting all this, Ernie because I was sexually abused when I was just 10 yrs old. I'm now 70 yet your sharing of this most horrific of all crimes against women took me back to my rape. I didn't tell anyone because I didn't think anyone would believe me, not when I was a very young child way back in the 1940s. I've never sought help and so I have never truly dealt with it. So the torture of that experience lives on and on, every time I hear of another woman being raped or injured sexually in some way. Please keep telling everyone you see until you get the help you need to have this raprist found out and sent to prison for the rest of his life. My prayers are with you, Ernie. God Bless you and bring you the strength you need to deal with this. You will be a hero for many. You are already a hero for me, having had the courage and strength to share thia with us. You have always been a hero because you're always the first one to offer a word of advice or encouragment whenever we nneed to share a concern. I wish I could share with my family and be understood and treated with respect, just as you and so many others on DINET offer. Mary P Mary P

Hi Ernie, Please excuse my lack of knowledge but does NIH stand for? Is Dr. Grubb back at work yet? I may wind up trying to see him. Like you, the specialist who diagnosed me with MSA with Parkinson characteristics did no tests..just a few simple muscle response exercises. Thank you for your response. Mary P

Hello to all DINET friends. I haven't posted for a long time. I've been through the wringer and haven't felt up to posting. I've been diagnosed with : 1)PAF and/orOrthostatic Hypotension with PD-like symptoms. I've been diagnosed with : 2)There's Nothing wrong with you, just go home and exercise. 3)Neurally mediated hypotension hypotension. (Both 2 & 3 were by the same ANS dr. He told me that nothing was wrong. He told my GP that it was NMH. 4)Parkinson's.....5)Multiple System Atrophy or Shy Drager. (Both 4 and 5 were by the same Movement Disorder Neurologist. He told me Parkinson's. He told my GP I had MSA. I need a second opinion on this MSA diagnosis because I know it can be connected to Parkinson's. I have a brother with PD and my dad had PD. I have a good DINET friend who advises that I seek a second diagnosis as regards MSA because one dr told her she had MSA and the next dr said it was POTS. It's extremely difficult to find one. Has anyone seen a caring MSA dr in Canada? The one I saw is in Kingston, ON. He was a caring man but I feel he really betrayed me by telling me one thing and my GP another. My GP hasn't even heard of MSA. She knows of nothing except Parkinson's. Has anyone here had a similar experience with an MSA diagnosis? Has anyone had a dr tell them one thing and then tell your GP something else? Has anyone gone to the USA to see a dr whose specialty is with MSA patients? If so, where and who? My GP can't do anything for me and she doesn't want to learn. I know enough about MSA to make me just want to go to sleep and not wake up. Thanks for listening. Mary P

Your photo brings back wonderful memories, and makes me wish I'd taken pictures of the days when ....... ! When I was teaching grades 1 - 2, before school began I'd collect, from milkweed plants, 4 - 5 monarch caterpillars of varying sizes. I was never able to find an egg. I'd collect the leaves of the milkweed plant so the caterpillars would have their only source of food. After that the children would bring in fresh leaves every day. These caterpillars never stop eating. Each one had its own huge jar with holes in the top of the lid. We watched as the caterpillars grew big and fat. Then, if we were lucky, we'd watch as they attached themselves to the top of the container. They twisted and turned and in doing so created the beautiful green chrysalis around themselves. I said. 'if we were lucky' because this usually happenee at night. Mother Nature was in charge all the way. When the chrysalis became clear and we could see the butterfly, all scrunched up inside, we'd watch as the butterfly began to wiggle. The chrysalis would split and the butterfly would pump its wings until they were strong and ready for flight. We'd put it outdoors on a flower and hoped that nature would take it on the next part of its journey. The males had a black spot on each of their bottom wings and, to the boys delight, there were always a lot more male than female.

A month ago I saw an ANS dr. He was the most arrogant abusive person I've ever had the misfortune to meet. It was an emotionally abusive and draining experience. He walked into the room with an arrogant and a 'holier than thou' attitude evident on his face and in this body language. The consultation lasted only 10 minutes. That was more than enough. A son who was with me would have left as soon as he opened his mouth, had the appt had been for him. On seeeing him, we put our questions away, knowing it would befutile to think this arrogant man might care. We were right. He didn't. I'd like to have said to him, "I hope you're kind and gentle with your family because a lifetime of your abuse would surely destroy them". I can't help but think that seeing him was a total discriminatory experience, but what did he discriminate against? Age? Failing body? A timid person who did not fight back? Facial features (I have neurofibromatosis, not really pronounced, but still it's there)? Female? or ? ? ? I've heard a programme about discrimination in the medical field. The 2 doctors who talked agreed that there certainly was age discrimination. On the other hand, we hear of some seniors, leaders of our countries, who get immediate and the absolute best care when they need this. They have status that the rest of us don't. The 2 doctors also spoke of how, if we can access a family member in the medical field, we get quicker and perhaps more thorough care than the average person seeking help. This is also discriminatuion. What is the name of the poem that says, "Let me count the ways"? Mary P

Hi to all, An ANS dr has prescribed Midodrine but left the actual writing of the RX for my GP. I see her this p.m. I have osteoporosis and am on Fosamax, a bone building agent. Will I have to give this up to begin M? Has anyone here had to do this? I'm asking because I really don't want to do this because my bones are are already too fragile. I'd rather do without the M. My GP has never heard of M or Proamatine so I have to provide the info for her. Thanks so much for any advice and help you can offer. Mary P

I can't find them anywhere either, drug stores, health stores, or sports supply places. I'm going to ask my GP to write a prescription and this may force the drug store people to try to find and order some in. Mary P