Sue

This is something that has been really bothering me. Since my last visit in the hospital I have noticed that my dizziness is prominent on my right side. If I turn my head to the right to talk I am instantly symptomatic. When I lay down I cannot lay on my right side. This is a daily thing it has never gone away since my last episode that was so bad. I also am numb on my right side. Face, neck, upper chest and upper arm. I am having an EMG this friday but I am wondering if it could be something else???? I also see a Neuro for the first time in a couple of weeks. I am not looking forward to a new doctor but guess you never know. When I say NCS I might as well bring all my documentation on it because they always look so dumbfounded!! Then they look at me as if I should know what to do because of all the info I keep... Wish me luck Sue

Hi Lorrell, Well I am definately noticeing I have more energy. But hasn't helped with the dizzyness. I will take anything I can get I managed to keep up with my family all day yesterday, my husband was impressed. We just worked around the yard, barbequed, went in the pool, Family stuff. But I didn't have to go in for my naps like usually

Its always something new with us everyday huh??? I'm not really on anything new except the vitamins and don't really think that would do anything, but guess you really never know... Today I was outside for a little while, and when I came it I was seeing major white spots, sort of like when you get your picture taken. strange huh??

Boy I thought I was doing so well. I saw my primary care physician. She works very closely with Grubb. Regular exam everything seem to be ok til we started with the orthost. Sitting my pressure was 130 over 70 excellent for me!! Laying down flat on the exam table. whooosh skyrocketed instantly 190 over ????. Took me a while to compose myself. Standing up after that incident. We go the other way. 80 over 40. I thought she was going to cry. She feels so bad she doesn't know what to do for me. She did recommend a neurologist but of course I called and can't get in til September. Is the whole world sick???????????????? I also have to go for an EMG, next Friday Alot of numbness on the right side of my face and body. Does anyone else have this?? and what did they find out. Last question (ha!) Does anyone seemt o have weakness in their vision. Some days I am good but lately my vision seems very weak. Just another complication??? Going to have them checked in a couple of weeks. Started on cerefolin (vitamin suplt.) two days ago, will let you know how that goes. NINA: I GOT MY FIRST ROSE IN MY GARDEN TODAY!!!!! Sue

Hi Lorrell I started on the Cerefolin today. It actually took my pharmacy a few days to get a hold of it. I talked to the pharmacist for quite awhile, he didn't seem to have any concerns over the vitamin supplement, and is actually hoping it may give me some relief from being so exhausted My hopes exactly!! Well wish me luck we'll see what happens in the next few days, not ready for no cha cha's!! not yet anyways. Sue

Have a wonderful trip and take extra special care of yourself. Sue

What doctors SAY, and what they're really THINKING "This should be taken care of right away." (I'd planned a trip to Hawaii next month but this is so easy and profitable that I want to fix it before it cures itself.) "Welllllll, what have we here...?" (He has no idea and is hoping you'll give him a clue.) "Let me check your medical history." ( I want to see if you've paid your last bill before spending any more time with you. ) "Why don't we make another appointment later in the week." (I'm playing golf this afternoon, and this a waste of time. --or-- I need the bucks, so I'm charging you for another office visit.) "We have some good news and some bad news." (The good news is, I'm going to buy that new BMW. The bad news is, you're going to pay for it.) "Let's see how it develops." (Maybe in a few days it will grow into something that can be cured.) "Let me schedule you for some tests." (I have a forty percent interest in the lab.) "I'd like to have my associate look at you." (He's going through a messy divorce and owes me a bundle) "I'd like to prescribe a new drug." (I'm writing a paper and would like to use you for a guinea pig. ) "If it doesn't clear up in a week, give me a call." (I don't know what it is. Maybe it will go away by itself.) "That's quite a nasty looking wound." (I think I'm going to throw up.) "This may smart a little." (Last week two patients bit off their tongues.( "Well, we're not feeling so well today, are we...?" (I'm stalling for time. Who are you and why are you here? ) "This should fix you up." (The drug company slipped me some big bucks to prescribe this stuff.) "Everything seems to be normal." (Rats! I guess I can't buy that new beach condo after all.) "I'd like to run some more tests." (I can't figure out what's wrong. Maybe the kid in the lab can solve this one.) "Do you suppose all this stress could be affecting your nerves?" (You're crazier than outhouse rat. Now, if I can only find a shrink who'll split fees with me ...) "There is a lot of that going around." (Good grief, that's the third one this week. I'd better learn something about this.) "If those symptoms persist, call for an appointment." (I've never heard of anything so disgusting. Sure glad I'm off next week.)

I too had endomitriosis, was diagnosed at the age of 12!!!! Had my first surgery when 14!! Told me I would never have any kids, boy did I fool them.. I have two teenagers now. Kelly 16, Steve 15, had to have a hysterectomy immediately after the birth though of my second child. and guess what, thats when all this started Sue

Ling, It amazes me at how different we all our with these diseases. In the pool is where I actually feel my best, Dr. Grubb said it was something to do with our blood pressure and being under water. Of course I never swim alone and if I do someone is in the backyard with me. I would live in my pool for the summer if I could Its the only place I find freedom from my symptoms. Sue

Strangely enuf, everytime I have been sick enuf to either go to the doctor or ER my potassium is always low. I was told it was because I take Florinef??? who knows. I also try and eat a banana everyday. Potato's also have potassium. Sue

I only see Dr. Grubb and my primary physician. But I noticed alot of people see Neurologists, can you tell me if they do anything different for you and what?? Thanks Sue

so strange to come on here to post something and someone already has. Probley for about two weeks now I have had some really strong numbness on the chin, right side of neck, chest, and arm. Not too sure what was going on. My husband really wanted me to go to the ER but I figured it was something to do with all of this. (NCS) My father had a massive stroke a few years ago and is totally paralyzed. Its scary to see what has happened to him and have all of these "classic symptoms" I am seeing my regular physician on Thursday will see what she has to say. Happy 4th everyone!! Sue

Hi Roy!! I was given a band in the hospital a few months ago to excercise my arms, I hate excercising and this is pretty easy. I know use the same band on my arms and legs!! and I can actually feel some improvement.. BRAVO Sue

Susie, I am wondering where in Michigan do you live?? I live about an hour away from U of M. Sue

I haven't yet but I am going to, I am having real issues with Dr. Grubbs office. They are just not calling me back!! Three phonecalls in two weeks, so not cool. Especially because it only takes a minute, so aggravating.

Does anyone know where Dr. Karas went??? He use to work with Dr. Grubb Sue

So very sad Nina, will also keep your friends in my prayers. Sue

I love coming here to post and read what everyone else is up to. You guys have all been a tremendous amount of support to me. I would love to talk to any one you more often. I couldn't figure out if I put my AIM name on here right but if anyone else would love to chat some times please put me on your aim if you have it. breystarr thanks, Sue

I think I have mentioned this before. We finally had to sit down as a family and discuss my illness. We have now decided that it is a "family illness". It took alot for me to understand how my husband and children felt about things when I get sick. I never really took the time to worry about how this affected them but I do now. My husband admitted to me that he was so scared he just didn't know what to say or do for me. My children as well. I have told them what I feel like, the best I can and what I need from them when I am sick. as well as what throws me off when I am not. The biggest thing I have learned from them is when I do feel half way decent to not be afraid anymore to leave the house with them. They have all assured me that if I feel or get sick they will take care of me and get me back home. I think that was the most difficult thing right now for me to do. I have myself all panicky before I even walk out the front door. We now save every Sunday morning for "family time". We have discussed things as a family that I don't think we would have for not doing this. And having two teenagers I think its so important to keep the communication lines open and for them to know they can discuss anything with us. and I can more opening share my feelings with them about all of this. I need all of their support, but I also now know they need mine too. Sue

Hi Ernie Dr. Grubb had me try the "leaning on the wall thing too!!", well let me tell you after trying three times, I said forget it Why bring symptoms on?? I just didn't get it. I know he said something like the more you do it your symptoms would improve but I could only stand there for maybe a minute and a half!!! I have been told there is a excercise bike that has a reclining seat on that some people use, I'm sure someone reading this will know what it is called. Dr. Grubb had mentioned that to me but I have so much excercise equipment that I couldn't see purchasing any more. lol I don't use what I have!! Good Luck Sue

WOW that was quick!! I am so glad you didn't have to go through the hassle of showing your house a million times, so aggravating, my sister is going through that right now. Best wishes in Florida, sounds like you will have a great support system there with your parents!!! Sue

Ditto here as well, I find myself squirming to find a "safe position", I even have a hard time laying down!! Sue

My husband and I made our reservations this afternoon, if anyone else plans to attend it would be great to set up someplace where we could all meet. Sue

thanks Deb for the information. Does it cost anything to attend this part of it??

A copy of the email sent to me from Debbie at Dynakids July 13 / 4:30 PM - 10:00 PM ?Goofy Slipper Lecture? Ward Pavilion WILDWOOD PRESERVE 5100 W. CENTRAL AVENUE TOLEDO, OHIO (419-535-3050) The parents generally love talking to adults with these conditions as well. Please don't feel ackward because we tend to have so many teenagers in DYNA...Just fit right in and enjoy yourself if you do come. We are asking that any adults leave seats up front for our DYNA kids though. Debbie I'm not sure where this is but I am definately going to look into this I will let you know. If I am up to it I am definately going.