briarrose

Carmen Now were talking and what a great scenerio. Who do we need to talk to so it can be implemented into med school?

Paige I'm sorry to hear that you're not feeling so great but I'm glad that you're reaching out for help. I wish that I had the right words to say to make you feel better because you're not worthless and Dysautonomia is a very hard illness to deal with at times. Just know that we're here for you and if you ever need to talk please feel free to send me a PM. take care Steph

Julia I'm glad that you had such a good experience there and it was worth your time. Thanks for the update too as I was under the impression that many were unhappy with the Cleveland Clinic. I hope you get some of the help that you need to manage your symptoms better, please keep us posted on your next appt. I'm glad that you were able to enjoy an evening with family But I know what you mean about not wanting people to see you how you are when ill. It's taken me a few years but I do better with the tachycardia and most of the arrhythmias especially with the aid of a Beta Blocker. There was a time when I could handle just about anything and my only 2 downfalls were ongoing sore throats and stomach aches. I found out that the sore throats were GERD and after they started me on medication that was the end of that. I think I have a problem dealing with stomach pain because I've had 6 kids and can't take that horrible pain anymore Anyway, take care steph

Carmen Thank you for the information it's very much appreciated. Sorry, going off on a slight tangent. I'm glad that you brought up the point that we're often told that it's in our heads or learn to deal with it because we have a chronic illness. My last primary told me that I'm like a diabetic, I have a chronic illness and need to learn to deal with it and not keep coming to him for symptoms. That was last summer when I was having problems with my vision and I finally took myself to a neurologist to get diagnosed with painless migraines with aura. Where is the medical doctors obligation to help us with new symptoms and as I told my last primary maybe it was him that needed the counselor. I told my Endocrinologist about my primary and he said is that guy kidding? Diabetics are the ones that you have to pay close attention too because they can go bad on you fast. I personally have seen a counselor a few times for other issues but the last time I saw him it was for a personnel issue and I brought up my illness. He told me that he thinks I should find a way to go back to school so I can have the career I want inspite of my illness. I told him how severe the fatigue and symptoms get when I'm overly tired and didn't know how I could work full time, raise my children and go back to school too. I like my counsleor very much but I also think that he has little experience with chronic illness patients. I do think a counselor can be good for you if you agree that you need their help. I also think that it's a quick answer for a primary to pawn you off because they don't know what to do with you and lastly I think that it's the doctor's that should be counseled on a regular basis to keep them in mental check!

Great idea! I would love a copy. You might check out this website too http://www.mychronicillness.com/invisibleillness/home.htm

Sorry I'm so late posting a response here but I've been thinking a lot Melissa you're right and I've always said that if they don't know what their dealing with than it either doesn't exist or you need a head shrink. Let me tell you why I'm the most upset and frustrated here; for over 10 years I had been going to several doctor's about severe joint pain that I kept having. Now you can probably only imagine some of the responses that I got from my 3 different primaries and 3 rheumatologists. My first rheumatologist told me that he didn't know what it was but to go home and search the internet and maybe I could find my own answer My second rheumatologist how not a clue but said he believed something was going on. My third rheumatologist didn't even call me back with the results of my lab work. It was 5 minutes with Dr. Grubb listening to what I was describing and he started me on Neurontin for over active neuro-transmistters. Now here I am having all of these muscle spasms and of course I'm going to be some what frustrated thinking that I don't want to go through 10 more years of **** before someone realizes that there is a simple answer. Now maybe there isn't any simple answer but it would be nice if someone was trying to figure out why I'm having such severe muscle spams. I'm sorry for getting off on a tangent. Emily it's nice to be somewhat back but not the best circumstances. I've missed my Dysautonomia family here. OH and Lyme disease thanks for the suggestion! I switched primaries last week and he did a lyme titer on me but I have no idea if this is a good test or not. I've been told to seek out a Western Blot or Elisa. I'm going to have to do some research this week I guess Take care and thank you guys for your support!

I'm sorry that you're going through such a rough time right now. You're right that the Home Health Nurse isn't doing her job and you should probably talk with her manager. Furthermore she shouldn't have hesitated to call the doc and tell him what was going on and if he wasn't in then she should've been talking to whoever was on call. Maybe the reason she couldn't get the line going was because you are so severely dehydrated in which case I doubt trying to catch up by drinking water is going to cut it. I get IV saline PRN and I know that especially when I've had a really heavy menstrual cycle my blood pressure drops to the low 80's and has been as low as 60, the only way I can stay off the floor is if I get the IV saline, otherwise it can take me at least a week of drinking water to catch up. Hang in there and don't hesitate to go to the ER especially if you're tachycardiac too.

Welcome here! I'm sorry to here that your niece has POTS but look at the bright side she has a diagnosis. There are several good websites that explains POTS & Dysautonomia. The symptoms are different for everyone and so is the treatment plan. I'll attach some weblinks and am more than happy to answer any questions you might have. There is also a really good file of information at the top of this forum page under the pinned area that has many of these websites already linked. www.potsplace.com http://home.att.net/~potsweb/POTS.html http://www.ndrf.org/

Not the computer Guru here but I would probably give the person the exact topic and date where they could find it OR you could copy the link out of the address bar and paste it to the post, Ex. your post today would be http://dinet.ipbhost.com/index.php?act=Pos...E=02&f=1&t=3579

Thank you for keeping us up to date and I'm anxious to see how your biopsies turn out but have my fingers crossed and wishing for the best. take care steph

I've been told tonic water too because it has Quinine in it but I've also been given Quinine pills to take. I don't know what's worse the pills or the tonic water I try to eat a banana a day too.

Well this was tough, I think there needs to be more options because in my case I think there are more than one reason. So I didn't vote. First of all I think it started in one of my first pregnancies as I would have black out spells and couldn't bear to be out in the warm weather at all in the summer, pregnant or not. But Now that there are other people in my family that have it including my mom so I'm pretty sure it was an inheritated trait. But it came on after having a flu shot in the end of October 2001. I was constantly sick until the middle of November when the tachycardia hit me like a ton of bricks. Since then I've continued in a downward spiral with constant new symptoms and little help from the docs here.

Congratulations!

Corina It's great that your husband could go with you. I might do a little better at times if I had someone backing me up. I got a chuckle about your hubby riding your wheel chair out Poohbear Wow, never thought about seeing an MS specialist, wonder if they would take me. I do have thyroid problems but I get labs every six months to check level as they keep my thyroid suppressed. About the 100 people off the street thing, I don't think any of them are symptomatic so I really think he's missing the boat. Julia thx I agree with everything you said. Sally My last primary was a DO and his answer to everything was see a shrink to help me manage my illness. I might have been more apt to listen if I wasn't having new acute symptoms. But 1 bad apple doesn't make the barrel. SunsetParadise 49 thx I might do that. Morgan Funny I was saying the same thing yesterday about us being more sensitive and not textbook. Finrussak I always get my MR from the hospital but have never tried to get them from a private doc. And because I'm in a specific medical system they have access to everything I have done regardless. But you are 100 percent correct about getting records. Your right about med students too. Furthermore I've had the opportunity to ask several doctors if they know about these illnesses and they all say it's not really covered in med school.

Lois You sound so upbeat and optomistic, good for you. Patch Adams said keeping in high spirits was part of the healing process just remember that. You're an inspiration to all of us and we're here rooting you on take care Steph

Julie I'm definitely no expert but the symptoms your describing don't sound as much like POTS as they do spinal nerve. Is there a professional you can call for advice before your appointment? Your cognative difficulties are probably POTS but then again your case is so different, I'm obviously guessing. I know I suffer many cognative difficulties and have yet to get a doctor that will listen to me and take me seriously. I've found over the past couple of years that my co-workers and doctor's have something in common - "You look so good, how can you be so ill" So again I'm not really heard other than Dr. Grubb, thank God for him. Let us know how you're progressing and if there is anything we can do for you.

ditto and thx for the update.

Thank you Linda for your update that is such great news. I was so scared for him. My grandmother had diabetes and I know how every little thing set her system out of whack let alone what Dan is going through. Take care and our prayers are still coming! Steph

OH and my physical therapist told me on one of my visits that my back mucle had been in spasm for so long that she could visably see the swelling in my back, she told me to go home and ice it every couple of hours.

Yes I have been dealing with Muscle spasms and cramps for around 3 years now. But if you read my post under neurologist you'll see how unsuccessful I was trying to get help from an expert about it. I've been told to take magnesium, calcium, drink more fluid and stretch my muscles before bed. Beyond that I was told thousands of people suffer muscle spasms and there isn't any answer for it, "just live with it" in my neurologists words! Ok, I'm obviously angry from the neuro appt yesterday and I'm not being any help here. I can tell you that they are worse in my feet, calves, hands, back and since last week now I get them in the left side of my chest. I can spasm for so many days that my muscles start to swell. ok that's my rant, sorry. I should've waited to cool down from stupid doctor appt. take care steph

Thx guys I'm not ever going back to that neurologist again but I'm worried about what kind of note he's going to send my primary doctor. I agree with you about our medical professionals being to over specialized. What happened to good ole medicine? You know where you could go to one doctor and expect to be treated properly or am I dreaming about something that never existed? BTW don't think I mentioned this but the neurologist gave me this little speech about herniated discs (I was in the hospital a month ago with several herniated disc from S1 - L5.) He said, "If you take 100 people off the street and scanned them at least 1/3 of them would have herniation and not even know it." Well that's all well and fine but it was the inability to lay down on my back and the numbness in my feet that took me to the emergency room and the ongoing pain, backache, intense pain in my hips and sometimes shooting pain down my legs since then. If I had this herniated back before why wasn't I experiencing even one of these symptoms before the ER visit?? errrrrr just makes me peeved to talk about it. Idiots! I was going to say something else but I forgot, tired, mad and heading to bed. thx for listening! steph

I saw the neurologist yesterday for muscle spasms, muscle burning, shooting pain and burning in my spine, herniated disc questions, numbness in my feet and a few other symptoms he asked about; like slurred speech, forgefulness, etc. He said other than sending me back for another MRI of the brain to look for MS that there was nothing he could do for me. I asked about Lyme disease and he never answered me and I forgot to ask again He told me to do some exercises at night to stretch out my cramped muscles and take calcium. He cut me off and showed me to his door like I was wasting his time being there. He doesn't get it, how much pain and suffering I'm doing these past several weeks. I'm so upset & frustrated that I don't ever want to complain to a doctor again, it just makes me look bad by being a whiner. You guys don't need to reply to this I just needed to say it to people that understand; preaching to the choir I guess! thx steph

I hope it's not the Mestinon because they were very careful on the patients they picked. Pretty Skewed!

My docs have been good about taking my CP symptoms seriously, probably more so then myself. I didn't even realize that I had EKG changes until I was admitted this past summer for stomach problems and they did a routine EKG. All chest pain should be taken seriously until you are told otherwise by a cardiologist. They might want to wear a king of hearts or a holter monitor on you to see what is going on. I know many of us experience chest pain and arrhythmias, some more than others. But before you jump on the nothing wrong band wagon get it checked out. Be safe, not sorry steph

ditto here too, get to the doc ASAP!