Mary P

Ernie, I saw the same doctor in Montreal as you did and he treated my son and me with as much disregard and disrespect as he did you and your son. I wrote to the head of the ethics dept about how poorly we were treated but of course this doctor denied everything. He told me that I had no problem except that I was totally out of shape and needed to go home and exercise. That was in 2008. Since then I've been diagnosed with a number of conditions, most recently small fibre neuropathy and neuromuscular disease. This was proof that everything I've been experiencing is real, that I'm not just 'totally out of shape'. Keep trying. There'll be someone who'll give you and your son the respect and help you deserve. The people at the Hamilton Hospital sound like the kind of caring and competent doctors you may eventually need. All the best to you and your son! Mary P

Thank you for your concern and support, Naomi and Bren. To my son who does everthing for me, to the both of you, to all Dinet members and to the 2 doctors out of the 7 that I've seen, I offer a heartfelt 'each of you is a godsend'. No, Naomi, the physiatrist I saw didn't have the equipment or computer programs which would have lead him to the next level of testing which would have indicated a cause for the neuromuscle disease. I have to see another physiatrist who can do this. Once this happens I can only pray that there will be help. I'm wondering had I been diagnosed even 2 years ago by the N of Movement Disorders, how much sooner and therefore better I could have been treated. My muscles are wasting away. My Gp denied me the right to see a Rheumatologist last year and was angry when I insisted on seeing my cardiologist again. I can hardly wait to see her again this week because now she'll have to believe that I really do have a lot of problems with every kind of movement I make. I'll post again after I've seen the next physiatrist. Mary P

I finally have a diagnosis that really tells me why I have so much muscle pain, fatigue and weakness. A cardiologist referred me to a Physiatrist who did muscle testing and then diagnosed neuromuscular disease. I now go to another physiatrist who'll do more testing and will hopefully be able to give a name to this disease and then prtovide follow-up treatment. Over the past 6 years I've become almost totally housebound but now look forward to a short walk without total exhaustion . I almost cancelled out on this last appt, thinking, "No one has ever helped me in any way, so why should I think the physiatrist can help"? During 2 separate appts, a neurologist of movement disorders had asked me if I'd ever had muscle testing but did nothing when I told him "No". I guess this taught me, "Never give up". "This next doctor just might be the one who'll care and make a real effort to help". At any rate, I thought this info on the physiatrist might help even one more of you. I haven't posted in a very long time because I've had no help since the diagnosis of automomic dysregulation in 2007. However, I do read your posts and comments posts to see how everyone else is doing as you search for help and wish you all the best in your search for answers. We all deserve to be believed and treated with respect. Mary P

Thanks for your input, ABC. I've a lot to think about esp as regards the recumbent bike. I think I'd like to try this. However, as for Dr. Levine's protocol, I've now read all the posts and doubt very much that I could ever handle it. Mary P

I hope someone can answer the following questions. 1) Is Dr. Levine's program is made available to people in Canada. I know it will be extremely difficult for me but I'd like to at least do my best to follow whatever is required, even if this is at a slower and less difficult pace, etc. I'm just so 'down' about being almost totally confined to my home. 2) Why does it take so long to get the paperwork that has to be filled out? 3) Would it be worth my while getting a recumbent bike for my home? There's no way I could ever get to a gym. Thanks so much for any help/suggestions. Mary p

Firewatcher, Thank you for this great info. You took a great deal of time to answer my question and I really appreciate it. I need to feel informed when I see my PCP and now I can. Reen, Thank you also for your important info. I can tell you that I need to take this med so I can function. Every night I say as I take it, "I need this med to give me a good sleep so I can have a good tomorrow". Again, I'm grateful to you both, Mary P

Firewatcher, I'm interested in reading your recent post about addiction or dependence. Actually, I've been wondering if I am truly addicted. Perhaps at this stage I'm dependent. You've made me wonder. I've had insomnia for at least 30 years and have taken meds other than these. How can one tell if she/he is addicted? I just took for granted I was addicted because of the withdrawal symptoms from zopiclone. Thanks for anything you can do to answer. I couldn't find anything on the www. Mary p

There are many kinds of meds known as benzodiazepines and klonopin is one of these. I was prescribed clonazepam, also called klonopin (and many other names), by a N in July/08, beginning with .25 mg/night. Eventually I needed o.5, then .75 and finally 1 mg/night. I saw a different N in Aug, 2010, for a different reason and happened to mention that I was taking clonazepam but wasn't sleeping much at all. He prescribed zopiclone, also known by many different names, 7.5 mg. at bedtime. Recently I came to know both of these meds as extremely addictive and just plain not good for us. Then I was angry that these 2 Ns had in reality made me become sddicted to this type of drug. They never explained what they were or what they did. Neither did the druggist. My previous druggist would sit me down to tlk privately and describe everything about any new med. I tried to take myself off the zoplicone, taking half a pill, 3.82 mg/night. I was fine for 5 nights but by the 6th Ibegan having the weirdest thoughts or whatever they are called. Anyhow, I was confined to a tiny place, surrounded by hundres of others, all shouting commands at me. I know I was aware of this happening because I'd say to myself, "You people don't belong in my life, get out". After saying this to myself several times, I must have dozed off and then it would happen the next night.... and the next. After the 3rd night I clued in and decided to do a search on exactly what zipiclone was and what it did. It was then that I realized I must have been having some sort of withdrawal problems. The next night I took the 7.5 mg again and decided to see my doctor about a proper program for withdrawal, after almost 2.5 years on benzodiazepine meds. I'm scared of what is to come. This is the website that gives all manner of info on these very addictive and dangerous meds....dangerous that is if we're not properly informed. I've learned that I'll ask lots of questions from now on. There is a forum we can join here as well. www.non-benzodiazepines.org.uk/benzodiazepine-forum.html Take good care everyone. Mary P

Anna...thanks for your help. Everything I've found relates to anaethesia and pregnant women, thus the term parturient. I still haven't tried to email the Oxford journals for info on anaesthesia and the the OI person but will do this soon. nowwhat...You advised me to make a decision based on a good clinician's advice. However, the gastro...wouldn't give any advice and said it was entirely up to me. I see my PCP next week but know she will say it was up to the gastro to do this. I've nowhere else to turn. I've wondered also if the thickening may be related to a cancer process and all the more reason that I should go through with the dreaded sigmoid... . My mom died of colon cancer and whatever was happening to her there was a great deal of abnormal growth that made her stomach swell tremendously. Interestingly, the urogynecologist I saw for bladder problems asked if I'd ever had a problem with anaesthesia. When I said 'yes', she didn't even mention surgery. She knew I was scared and so went another route, so I think she has experienced a problem in another patient. She was much younger than any other doctor I've encountered and perhaps is more up-to-date on dysautonomia and other current conditions. I'm wondering too if my colon was inflamed during the 2000 colonoscopy. If so, it wasn't mentioned in the report but that was perhaps why there was pain from beginning to end. Overall, as a lay person, I think there are a lot of problematic areas within my colon. Endure....you have a most appropriate name. I'm thinking that I may just try to 'endure' the sigmoidoscopy but don't know if I'll make it. I dread and fear the torture of intense pain but also dread and fear sedation so may ask for the nurse's hand to squeeze and a towel to bite down on. Maybe then my groaning won't be so intense and hard for those present to 'endure'. When I was given 'just a bit' of sedation during my virtual colonography, I felt immediately as though I were paralized and could barely move or speak. Caterpilly...I've had several sx but never had the adverse effects of anaesthesia until I developed dysautonomia. I have since read of anaesthesia causing the deaths of dysautonomia patients but I guess no one knew how dysautonomia patients would react. I guess anyone can actually die due to anaesthesia but it scares the hec out of me when I do know what can happen. Again, thank you all for caring and sharing. I have 2 sisters who are nurses but they don't want to talk, suggest or help in any way because they know nothing about my condition. Mary P

I can see that you've had a really bad day and have every reason to vent. This is a good place to do just that because we all understand. I'll bet you feel better already now that you got that off your chest. Be kind and gentle with yourself and I hope you get a good sleep. A good sleep for me is the best tonic in the world. Sending hugs your way. Mary PO

I had this info with me when I saw the gastroenterologist but he wasn't interested. At any rate, I'm passing it along to DINET members as it may be of some interest to some of you. I found this through 'GOOGLE'. The Northern Virginia CFS/FMS Support Group anesthesia & procedure preparation I'm sure that those of you who live in USA will already know of this group. There is info on non-histiming releasing anesthetics which I want to ask an anestheliologist about. The gastro... didn't want to hear about it. There's also a story from a woman who had a colonoscopy and how things were going very wrong for her until she remembered and told them about her OI. The article also advises having a Medical ID and I know this has been discussed on this forum before. I guess for someone with a lot of issues it would be impossible to get all your info on a small bracelet tag. Interestingly, one thing that is mentioned is 'sensitive to anesthesia'. Maxine, you're very fortunate to have a PCP who'll advise you when you're not strong enough for a particular procedure at a certain time. Good for you and your doctor. I wish you all the best whenever your colonoscopy does happen. Would you consider asking for a CT Colonography? There is some pain but it is short lived and comes from the carbon dioxide used to 'blow up the colon'....like a balloon I guess. It was the relaxant that caused the problem. Mary P

Yes, your news is great news. No one has told me I need to see a shrink but maybe I do. Now I know this isn't the complete answer to your improvement but I guess to just chat with this kind of doctor is good for us. I hope your improvement continues. It gives us all hope.

Hello to nowwhat,caterpilly,Maxine and all who may have to have a colonoscopy or sigmoidoscopy some day. Here are some of the things reported by radiologists. I think that at least some must be important enough to follow up on yet no doctor has said a thing to me. As far as I could tell, there was no mention of any type of relazant used. Scan of abdomen and pelvis without contrast. 2009 (100 ml Omnipaque 300 was administered intravenously....I don't remember anything given intravenously. What is this? 1) There is a zone of the distal sigmoid colon where there is a combination of mural thickening, diverticulosis and mild adjacent mural thickening. The features are probably due to localized diverticular although the lumen itself is difficult to appreciate. *(What in the world can this mean?)* 2) There are several mildly dilated loops of small bowel but they are in skip areas and there is no significant thickening or other abnormality of these loops. 3) Probable focal diverticulitis in the sigmoid colon. 4) Most likely mild reactive ileus. 5) Neoplasm in the sigmoid colon cannot be excluded with absolute certainty,but is not suspected. CT Colonography 2009 ( 100 ml Omnipaque 300 was administered intravenoiusly.) I'm guessing that this was a type of relazant??) 1) There was incomplete distension of the sigmoid colon. 2) Multiple cortical cysts in both kidneys. 3) Multiple Small amount of pericardial fluid. I guess all I can ask is:"What if any of these conditions would cause severe pain"? I've decided to ask to delay the procedure set for Oct 5 and ask to speak with an an anaesthesiologist and request that he/she be present to monitor 'everything'. I'm not allowed to read or get a copy of the recent CT colonorraphy so will have to write to the radiologist to send me a copy. I don't know about other countries but in Canada the reports 'belong' to whoever writes them and we have request a copy from them. I'm still having doubts but if I can speak to the anaethesiologist I may feel better about a sigmoidoscopy. Mary P

Hi Maxine, I'm truly happy to have heard from yet another knowledgeable Dysautonomia sufferer. I'm not sleeping at all and as we all know, that makes things so much worse. I'm so scared that, along with a funeral director, I'm making plans in the event of my death, and I'm updating my will. I'll have to phone the gastro's secretary to ask about a lower GI barium enema. He's on holidays now for a few weeks. I feel as you do. Although the pain is horrendous, I need to know that I'll wake up. I don't know if he'd accept a cancellation so I can talk to him again. I think he feels he's heard all he wants to hear from me. He was chuckling to his secretary that it would be harder on him than on me. I know from reading the 2000 colonoscopy that I also have excessive diverticuli and probable IBS. I imagine that shoving through all this has to be painful for anyone. He said he'd be very gentle but I don't imagine anything will feel gentle. The surgeon who did the colonoscopy in 2000 was a kindly and gentle man. Anyhow, I've had a really bad day, could barely walk pained all over, so will write more tomorrow when I can read and tell all of you more about the 2000 colon....and 2004 virtual colon.... . Whatever happens, there will never be another one. A sister-in-law of mine said to her doc, "Take a good look around when you're up there because it will be your last chance". Your care and concerns and suggestions mean a lot to me. Mary P

I really appreciate your responses, nowwhat and caterpilly. I also love your names. I do have the report on the colonoscopy that created so much pain and there is nothing about the type of anaesthesia used. There is no nurses report and once when I asked for this I was told that nurses aren't allowed to give out such info. However, it was a nurse who very kindly told me that my BP plummeted when I was given a second 'dose' of anaesthesia because I was in such great pain. I actually feel I was given too much but no doctor is ever going to admit this. My BP is always very low to begin with.I remember moaning loudly for some time and then I guess the second dose was given. The surgeon was with me when I was finally 'coming to' and asked if I'd felt any pain. I said, 'Only when it was really bad'. He said, "That was the entire time". So I don't really know when the second dose was given. He recommended that I never again have the regular colonoscopy because it was too dangerous for me. However, either a full colonoscopy or a sigmoidoscopy are the only ways to check to see what a problem may be. Still, if it turns out that there's no major problem, ©, I'll never again go through even a virtual colonoscopy. I'm done in for the day and will write more tomorrow. I'm going to send the doctor here a copy of what the last surgeon said and also some records of the BPs I've been keeping every day since 2007. I really don't think the gastro.... got what I tried to convey and also didn't appreciate that I knew lots and wanted to tell him that I was fully aware of my health situation. I think those of us with Dysautonomia have to search and learn a great deal for ourselves. I live in Canada and we don't have the great places like Mayo and johns Hopkins like the USA has. It wouls totally bankrupt me to travel to one of these places to seek answers and help. Will chat tomorrow.

This is exactly what I was thinking when I couldn't sleep the other night. I was even thinking that it would be an organization I could donate to every year, as with cancer, heart, Parkinsons, etc, perhaps even leave something to after my death. Even churches look for bequests in a will. (Don't know if bequest is the right word). Perhaps if we were to accepted as part of another established charity, it could be Parkinsons or MSA or some other organization whose supporters also have some sort of neurological condition.

After a virtual colonoscopy I saw a gastroenterologist for the results. There were problems in the sigmoid colon and for about 1 foot above that. It is tremendously painful for me to have a regular colonoscopy and brought him proof from my previous doctor and pathologist, yet reluctantly agreed to have a sigmoidoscopy, feeling I need to know what's really happening to me. I have OI, both NMH and OH and I tried to explain that I couldn't tolerate the regular type of anaesthesia. He hadn't heard of Dysautonomia and was either annoyed or disinterested when I tried to explain how I thought I must have died when I didn't awake for 2 hours after a regular colonoscopy in 2000. He promised to use just a bit of relaxant, but I had given consent that 'just a bit' of relaxant be used for the virtual colonoscopy. That 'little bit' made it almost impossible for me to get up, change into street clothes. My son had a transport chair waiting for me right outside the change room and I fell into it and then into bed when I got home. My mind was 'out of it'. I had info saying what anaesthetic is best for OI patients but he knew nothing about it and again dismissed my concern. I told him about my constantly low BP and said it would have to be continually monitored and that I'd need an IV from the beginning and he did agree to these conditions. Still, after 2 bad experiences, I'm scared that the regular anaesthesia might really kill me. I'm new to Toronto and can't just find new specialists easily. I think to myself, "If I do die, at least I had my son sit in on the consult and he can verify everything I told the doctor". Can someone please advise about what to do in such a situation? Thank you to any or all who can help. Mary P

What with all the disappointments we endure with visits to the doctors, this is indeed great news. Now I can tell my pharmacist that she can once again get midodrine. I know she felt badly when time after time she couldn't supply my needs. Does anyone here recall that snappy tune, 'Happy Days Are Here Again'? I think I heard it ages ago by Mitch Miller and his band. At any rate, this is at least one happy reason to believe that someone cares.

I live in Canada and used the generic brand, Midodrine, for 2 years and then suddenly couldn't get it anymore. So the pharmacist gave me Amatine and I think by the time I need a refill, this name drand will no longer be availabe either. For 2 1/2 years I was taking 10mg/3xday. When I began to realize that neither generic or brand would be available, I cut back little by little until I'm now on 5mg/2xday. Honestly, I don't feel any different than when I was on the higher dosage compared to now. Perhaps I need to cut back to 5 mg/1x day and see what happens. As I prepared for a virtual colonoscopy, I was on a 3 day liquids only regime with 2 cans of broth (Sodium) a day included in the 12-14 cups of fluid I drank. I never felt as well or walked as well or had as much energy. I'm guessing that it was the extra liquid, water and gatorade, along with the extra salt in the broth. I took only 5mg Amatine on those days. I haven't been able to drink as much now that I'm eating again. I wish you all well, and hope that the Amatine or Midodrine will always be available to all whom it has helped in any way. I will write to our Minister of Health in both Toronto and Ottawa.

Me too, a brain MRI in 2009 and a follow-up one this past Feb. showed no abnormality. Mary P

Six weeks ago a urogynecologis diagnosed me with SFN....just from questions she asked and the answers I gave. She was a young, very bright and compassionate doctor.I got a copy of her report and took it to a neourologist 2 weeks ago. He was interested in it but said nothing. He also did nothing but tell me to come back in 6 months. I felt I was being rushed out of his office and left on the brink of tears. My PCP won't know what to do and I don't want to wait 6 more months if someone else can help. I waited 1 year to see this N, then another 4 months and now a further 6 months to come. He was rather abrupt when I pointed out my neurofibromatosis and he asked why I hadn't mentioned it before. I said, "I didn't have a chance to mention it and I thought you'd notice it yourself". The growths on my face, arms, etc are many but not very big. Still it isn't every day that a doctor sees these. I guess I have 2 questions then and hope someone will have the answer to one or both. 1) I see my PCP in 2 days. What kind of specialist could I ask her to make an appt with as regards the SFN? 2) Does anyone know anything about neurofibromatosis....type 1? One of my sons has this as well but his growths are much larger than mine and are apparent immediately on seeing him. Do they have an adverse effect on my autonomic dysfunction? My son had an MRI or Scan which showed the growths were not only on the outside but also along his spinal cord. They haven't effected his movement or anything else, at least not yet. I don't want to have another MRI or Scan if no doctor can use the info to help me in any way. Thank you for any help anyone can offer. Mary P

Maxine, you are very strong and brave. I can't even begin to imagine the discomfort and pain you endured with the CT and the extension and flexation movements you went through. It's like you went through great agony so all of us could learn from your problem and experience. Even the slightest 'wrong' movement of my neck/head causes me so much grief. I pray that now you will get the help you need to make things better for yorself. Your husband sounds like one terrific guy! God Bless you both. Mary p

Me too....so wickedly hot and humid here. I've rarely been able to get outdoors for the past month because of the heat and humidity. I think I heard on the TV news that this is the hottest summer ever. I often think I should get a cooling vest but I don't even think I could walk very far with this, so I use my walker in the indoor garage here. mary p

Oh My Goodness, Yes, Yes, a million times over, ...day after day for the past 5 years. It used to be just a few hours but has gradually come to last into the evening and I feel so useless. Sometimes I think that I just can't survive another day of this. But life goes on. A brother visited me a few days ago and I was up only about 1o minutes when I had to lie down again. He said, "Are you ready to rest so soon?" I didn't have the energy to answer.