Sue

I wanted to mention I also talked to my new neuro about my brain fog/lack of concentration moments. He wants me to do some "aerobics for my brain" Not as bad as it sounds. All he wants me to do is play a couple of games of solitaire a day. And not on the computer. And also color!!! how fun... Certain parts of the brain are affected when one experiences brain fog/lack of concentration and these activities stimulate them. Now if coloring could take my extra weight off!! Sue

Hi Mighty Mouse Congrats on finding a well informed doctor, so hard to find. I just wanted to mention I was the one who Dr. Grubb had switched from Celexa to Lexapro. I gained 42 pounds very quickly. Just keep your eye on the scale, easier to put on then to take off. Good luck Sue

Hi everyone!! My new neurologist has taken me off the cerefolin, I was getting killer headaches that I couldn't handle. Today is day three and the headache is now gone. Still not positive it was the cerefolin but guessing it may have been. I am disappointed though it was really helping with my fatigue and energy level, we are now taking just a multi vitamin. Hoping it helps all of you though without the headache Sue

I so volunteer to go first with the PET Scan. Sue

BuddyLeesWife Hi!! When all my tests are finished then we are going for the sleep test. So we'll see how things go. Lorrell I forgot to mention, he took me off the cerefolin. Since taking it I had started to get some real killer headaches. He isn't saying that was the cause but wanted me to eliminate the 'script and see what happens. His name is Dr. Ramesh Gopalaswamy, wow what a mouth full!! Otherwise known as Dr. "G" His office is in St. Clair Shores and he works out of Bon Secour in Grosse Pointe. I was impressed with him, we'll see where it goes. Sue

I'm thinking I may not have this as under control as I thought. I only have been seeing Grubb for my NCS, this was my first visit with a neuro, suggested by my primary care physician. First of all I was totally impressed, not only did he know what NCS was he treats several patients who have (thinking I may be able to start a support group here after all). After listening to me and my daughter about my last year with this, hospital stays, weird symptoms, med changes, weight gain, etc. He calmly sat next to me on table and explained even though the doctors don't know a whole heck of alot about this, that he and his collegues were doing the best they can. But he doesn't like to assume that everything is related so he has scheduled a million tests. The guy seems to be major thorough. He even took probley a good ten minutes and asked my daughter questions. things I would not have thought to mention. We are doing all of the following ENG He is checking to make sure I don't have Menieres (probley not spelled right) or any other inner ear thing going on I think Nina has this??? Echo 3-D of the heart Making sure no damage is there MRI/MRA Brain scan making sure nothing is going on, plus checking for blockage or damage in the vessels Ultra sound/Coradid artery Again checking for blockage Stress test/ Already told him don't last long Mega Blood Work So even though I am not thrilled about all the testing I am glad I seemed to have found someone close to home that is starting off very thorough. And of course I am hoping he doesn't find anything else wrong will be glad if he can help my symptoms in anyway. Sorry so long, It is beautiful outside right now, 64 degrees perfect to go sit outside!! So off to the backyard with the pooches, Happy day everyone!! Love Sue

Hi Lorrell I guess you could call it a prickly feeling, hmm not sure. When I am outside my skin and the hairs on my skin almost feel like I am on fire!!! I never really had that before, I am thinking I just can't tolerate any kind of heat now. I am seeing a neurologist today for the first time am going to mention it to him and see what he thinks. will let you know sue

I am sorry for whatever difficulties are going on in your life right now. Remember no matter what to put yourself first. Like all the other posts say, eat, take your meds, keep yourself hydrated and relax. I will keep you in my prayers, hoping that helps Sue

Well I am lucky my sister in law cuts my hair at home and thats bad enuf. But she did suggest that you could call some beauty shops and ask if they have anyone who makes housecalls. Alot of them do and my sister in law has gotten many clients that way. Its worth a try!! Sue

Yes I did do that!!! My husband was so surprised!! He couldn't believe I finally did it. I have been talking about it for quite some time. He says he loves it!!!! He kept playing with the back, its really short and I put gel in it so its kind of spikey. He is so funny, he thinks he now has a "retro wife" lol I sure had extra time this morning I was actually dumbfounded to be finished so fast. What a great feeling!! Too bad I didn't do this long ago when I was working. I could have used that extra hour to sleep. Good night Sue

WELL, I finally did it. I took my own advice and I cut my hair OFF in total about 12-14 inches. I have had my hair cut in the same old 70"s Farrah Fawcett hair cut forever. What a pain in the morning I never feel good enuf to do it anyway. so we pin up what we can and leave the rest. Well last night my sister in law to be cut it off. This morning we are talking 10 minutes max to do my hair, and that was without getting all sweaty and nauseaus, I am soooo HAPPY!! My husband hasn't seen it yet so he is going to freak. Its spikey in the back (thats pretty short ) and basically just feathered in the front. so yes I still have a little bit of 70's still going on, but i did it. I have never been a fan of short hair but I sure am now!!!!!!!!!!!!!!!

I totally agree with you Ling, as mischievious as they can be they ARE the BEST medicine and support you could have. Sue

Hi Unicorn Me too!! When I was sick in April I had what they called "non-epileptic seizures" because they found nothing on my MRI and several other tests. That is very interesting because that really scared me and my family when it happened. It also hasn't happened since and hoping that it doesn't

Ann I am not sure that is why I am going for the EMG, I have had the numbness for a while, I just didn't say anything to my doctor because I figured it would go away, dummy m so now I have to do that and see a neurologist, but no I don't have anything wrong with my back. It may just be a pinched nerve. Sue

I love being outdoors in the summer but have the same problem. I get up early just to enjoy my coffee outside on the deck before it gets too warm. My husband has also made a nice shady spot outside for me too!!!! I usually hibernate during the day, unless in the pool (my favorite no symptoms spot!!!) and come back out in the evening to sit on the porch...The fresh air really does me good!! Have a great day Sue

Well test was concelled due to insurance mix up, of course. rescheduled for next Thursday, only now after reading all of these posts I am really nervous , hate pain and can deal without it. Will still have test done because I am completely numb on my right side and its driving me crazy!! Sue

WOW I am glad you asked because I have been too embarressed to do so. I have "NO' desire whatsoever. I actually could care less. I have talked to Grubb about this and he has suggested medications but I am so sensitive I hate to mess up what I have established so far. I have thought about using some of the over the counter creams but haven't done so yet. I don't get palpatations any more but my husband may if he is ever lucky again Thanks for asking the question Lorrell. Sue

Amazing how smart our dogs are I thought I'd share one more story!!! Later that afternoon at Kellys party my dad (who is paralyzed from a stroke) is sitting in his wheelchair laughing uncontrollably. None of us can figure out what the heck is wrong with him. My brother starts yelling at Buddy who has conveniently sat in the middle of the kiddy pool and won't let none of the little ones in!!!!! Can you believe it. He also taught himself that day to open the cooler and help himself to the ice cubes. He too is lucky he is the sweetest thing.. On top of being so mischievious he is very intelligant. He has always stood next to my father whenever we transfer him from his chair to the car. He mostly is in the way but somehow he knows and thinks he is helping.. and for whatever reason my dad feels more comfortable with the dog by him (he's big, buddy weighs 120 and all muscle). If someone tells him to move my dad yells. Amazing huh... Have a great day. Sue

Hi I also was put on cerefolin per Dr. Grubb, for me it was to help with the "day long exhaustion" I feel much better, not completely but enuf I can tell the difference!!! Sye

Just wondering if anyone made it to the Dynakids conference in Ohio?? Looking for anything new you might have learned?? Please let us know. Sue

I too read back posts from 'this blows.' My family and I compare this to having cancer. I am sick for a long time and then go into somewhat of a remission where I still have symptoms but I am much more functional than at other times. I take full advantage of the times I am feeling at my best!! My system also gets immune to medications where I find myself having to start all over again. But I do because I have to. I have come to grips with this is the hand I have been dealt and I am going to deal with it. I think all of us are different, just like with any other diagnosis. Find what works the best for you, have a good support system and take extra special care of yourself. Better days are ahead, be patient.. Sue

I thought you would all enjoy this, this morning. Today is my daughter Kellys birthday. So last night we made her favorite cake, frosted it and left it on the cupboard. Probley around 2 a.m. I hear the dog in the kitchen pushing his water bowl around. so I get up and go in the kitchen. The cake is half gone!!!! and I have a 110 pound yellow lab with pink frosting all over his face. So I look at him, and asked him what the heck did you do????? Not only do I not get the usual guilty dog look, he pushes his water bowl towards me like PLEASEEE I need a drink now. Can you believe it haha Time to go make another cake!!! Happy birthday Kelly! Sue

do you think i should take maybe some motrin or tylenol before going???? Sue

Hi I am having an EMG done on Friday morning, My doctor is very concerned with my numbness and has set this up prior to seeing the Neuro the following week has anyone has this procedure done and can tell me about it?? Thanks Sue

We were definately attending but had some family problems, My father had a stroke and is paralyzed on his right side, my mom is his sole care giver but at the moment she is ill and needs a hip and knee replacement. So even though I can't help much I am still going over even just to keep her and my dad company. I was really looking forward to attending but will just have to settle for next year. you sound so much like me. I have to understand everything. Please let me know how it goes if you are attending. Take care Sue