pickledfairy

CONGRATULATIONS on your new little bundle of joy!!!! PS that's my mom's brithday as well....must be a special day!

Shannon, I haven't had eye surgery so i cannot offer you any advise but I can send you prayers. I have had the strange tongue symptoms. It feels like my tongue is thick and won't wrap around certain words, people also tell me that my words are slurred. I also tend to have muscle twitches at the same time, but not always. I have been to the ER and they originally thought that my electrolytes were off, but they were not. After three liters of fluids it seemed to get better. When it happens I usually try to drink more, but it doesn't always help. I am suspicious that there is something else up especially since I have been having trouble with my gastroparesis for four weeks and have needed IV fluids for dehydration, but have not had any slurred speech episodes. So, I am confused. But I would suggest going to the ER and getting your electrolytes checked and to have them look for further causes. Good luck! Sheridan

I have had trouble with my veins not wanting to cooperate with IV or blood draws since I was a small child....the lab techs would see me coming and immediately call a NICU nurse or someone from LifeFlight because they knew that if they didn't I would walk out of there with 10 or more sticks rather than three or four. At the ER this week it took multiple sticks and multiple people trying, it does get tremendously frustrating and not to mention painful, although i think my tolerance has grown over the years. I have been dx'd with hypovolemia since being dx'd with AN and POTS, so not sure if the hypovolemia is something I have always had or if I just have small veins. I joke that my veins are small because I was a premie (2lbs9oz), but no one thinks that the case Sheridan

Sorry for the confusion, that is a word my doc has used with me so I thought it meant the same thing, now I am going to have to ask him for clarification!

I am forever getting medications, food and sometimes even thick liquids stuck in my throat. It sometimes feels like there is a lump at the base of my throat and then there is the intense burning in my chest when whatever is stuck begins to break down. I have gastroparesis as a result of nerve damage from autonomic neuropathy so my GI doc thinks that the nerves in my esophagus are now being effected...I am having an esophageal manometry test done on Wed. to determine if it is in fact a motility problem causing the difficulty. Do you have any motility problems? I would suggest you mention the dysphasia to your PCP and see if you can get some answers. Good luck! Sheridan

Lots of luck and I will be sending you some prayers. Sheridan

Mine was 90 minutes as well. My doc said that if you are still not empty at 2 hours then thay can diagnose you with confidance, but if you have a normal study then he would recommend a 4 hour study as some people will have a negative 90 minute scan and an abnormal 4 hour scan. Sheridan

My GI doc was just telling me today that considering my cardiac hx he is VERY glad he did not put me on Zelnorm for my gastroparesis...although nothing else has worked as of yet! Although I know many GP suffers for whom Zelnorm is the only drug that works...I hope something can work out for them. Sheridan

Sending warm healing thoughts and prayers.

Hi Morgan, I recently had repeat adrenal labs done due to wacky symptoms that have been uncontrollable with meds. I was not told to stop my beta either, however, I did do the 20 minutes upright (strolling around the office...not fun but was able to get through) and did do the low sodium diet. My aldostrone was low normal, but my renin was nearly nonexistent as well at 0.2...my neuro was the one who had my PCP do the test, now my PCP says she doesn't know how to interpret the results and wants the neuro to explain to me, but he hasn't returned my calls or emails. I am assuming he isn't worried (but we all know what our mothers told us about assuming . I would be interested to hear what your doc says about your results and how much of an effects the betas have on the results. So, keep us posted! You would think that if they were worried about the betas effecting the results they would have told us to stop them! Gotta love complicated labs! Sheridan

I am in the same boat your are Lavender. I have had insomnia (this time) for roughly three months and have tried just about every sleep aid imaginable and nothing works. Two nights ago I started Sonata, but no luck yet. I have been doing a lot of researching and have also tried everything recommended in terms of cleaning up your sleep hygiene. I know that getting 1-2 hours of sleep a night (no naps during the day) is not helping how I feel at all. I still force myself to do 10-20 minutes a day of walking on the treadmill and forcing myself to get up at the same time very day no matter the time I fell asleep, but I guess I am just not tired enough to fall alseep. I do have some elevated hormomes that can contribute to sleeplessness (i.e. cortisol) but further testing hasn't proved that I have any other disorder such as Cushing's going on. I just keep plugging away. Hav eyou had any of your hormone levels tested? I think Ativan is next on the list to try, I will let you know how it works. So, I guess all that rambling was to say your not alone and hang in there. I will be sure to share with you anything that we try that helps. Hang in there.... Sheridan

Jacquie, I don't have any sage advice for you, but I wanted to send you some cyber hugs and let you know I am thinking about you. Sheridan

What a handsome boy!!

So glad you were able to get your GES completed, I hope it will give you some answers and lead to effective treatments! In regards to the 2 hour study, my GI doc said that if you have an apparent slow emptying time for the 2 hour then you will have delayed emptying on the four hour ( I asked him this question when mine came back...I only emptied 26% after 120 minutes)...he said you just have to be aware that the 2 hour study may not pick up everyone who delyaed if it is not severe. Good luck, I will be thinking about you! Sheridan

Never heard of it, but looked it up and it stands for Muscle Sympathetic Nerve Activity....looks like it can be measured during baroflexture testing, etc. One article I could find that defined it stated it is "a direct measure of sympathetic nervous outflow". Don't know if this helps, but I couldn't find much more unless I read a ton of articles....and right now I don't think I would have understood them anyway ! Sheridan

Jacquie, I'm so sorry to hear of your aunt's passing. You are in my thoughts. Sheridan

Maxine, I am so sorry for the loss of your mother. I am sending comforting thoughts and prayers to you and your family. Sheridan

Maxine, Just wanted you to know I will be thinking about you during this difficult time, sending thoughts of peace, comfort, hope, support and some extra energy so you can hang in there and that your POTS symtpoms will be few. Sheridan

Too funny, I too had an ER resident pull out his palm pilot and say...."here it says you have infectious TB" and then he laughed and said, "thats nothing like you have been explaining to me are you sure you are telling me everything or are you just smarter than my little pocket medical dictionary?" We got a good laugh out of it, but I never researched to see what he could have found by mistake....I learned something new today! Sheridan

Thank-you so much for your replies. I first started noticing symptoms of gastroparesis in Oct. and was dx'd in December. Up until a couple of weeks ago I could eat clear soups and drink my fluids during the day and then I would try to eat small portions of whatever meal my parents were having. I have tried Reglan, E-mycin and now am waiting for my order of Domperidone to arrive. I am hoping that will do the trick. I have been about 20lbs overweight since I first got sick. When I was first dx'd with the GP I didn't have any weight loss, which actually prompted them to look at my thyroid, which was found to be hypo and I started Synthroid....so now that the GP is getting worse and I am taking in less the weight seems to be falling off. I'm glad I am getting lighter....but this is NOT the way I want to do it! Hanna: I don't love yogurt, but mixing it in a shake sounds good. I guess I have got to get out of the mind set that milk shakes are fattening now that I need the calories. I have tried smoothies and shakes before, usually I can get in about 4oz at a time. Thanks for the Electromix idea...I would welcome anything other than gatorade! TeaRose: Thanks for the suggestion of having something ever couple of hours, I need to get out of the routine of 3 squares a day! Melissa-I had found a couple of those web sites, but not all...thanks so much for the links, they look like they will be a godsend! Angela-thanks for the support...we should get together again some time! Off to search for smoothie/shake ideas.....thank you all again for your suggestions and thoughts! Sheridan

I am struggling lately with eating and drinking as a result of gastroparesis (lost 9lbs in 8 days). If I push to get my fluids in for the day, then it is impossible to eat anything. My daily intake usually consists of 1L of Gatorade and/or water, 8oz skim milk, and a piece of toast, some plain mashed potatoes, 2 cans of peaches or pears, and 4oz of clear broth. Gatorade is making me gag so today I bought Smartwater, but I don't think it has enough sodium/potassium. Any suggestions on how to get in enough electrolytes? Any liquid meals favorites I can add to my menu? Thanks in advance for your insights. Sheridan

Jacquie, I had this same problem and still do at times. I have found that I just have to keep plugging away at it even if it means that I only do 5 minutes, usually I can do a bit more the next day. The best advise my doc gave me was listen to your body, it will tell you when to stop, don't push too far, but be sure you do keep trying. When I was in the hospital the PT I met with ave me excersies I can do with my legs that I will do on the days I can't even crawl to the treadmill, just to be sure I am doing something with my legs/body. I have been following my docs advise for the past four months and I have been able to work my way up to 20 minutes most times, but on bad days (like the past week) I go back to between 5 and 10. So, you are not alone, many POTsy patients have this happen, but in my experience and doctors suggestions, I say just keep plugging away at it, doing only what you can each day. Sheridan Oh! My doc also suggested I get a heart rate monitor to wear when I am walking and told me to not let my HR go above 120

I also have a vitamin D deficiency (8.2) and have been taking 50,000IU if vitamin D weekly for the past four weeks and I am now switching to 1,000IU daily, we are rechecking my levels in another four weeks. My doc does think that the vitamin D deficiency is causing my muscle twitching eipsodes and can be contributing to my joint pain/fatigue. From what I understand it can take a long time to get vitamin d levels back to normal when they are so very low. I have not had any problems with the supplements as far as side effects. Good Luck, Sheridan

Hello All, I have tried Mestinon, Reglan, and E-mycin for my gastroparesis to no avail and now my GI doc wants to try domperidone. I did a search and saw people had tried it, but the posts were a bit old, so I was curious how people are still doing on the drug and if their experiences continue to be positive. I'm a bit paranoid I guess because of the number of new drugs in my system in just the past month and I tend to react to meds strongly (much like others on this board), so I worry that one more will push me over the edge. Thanks for your thoughts, Sheridan

I have been experiencing a strange headache for the past three days. I wake up with it in the morning and it doesn't seem to want to go away. It is an intense aching sensation behind my right eye like it is the eye socket itself that hurts. My eye is blurry at times as well as there will be a spot that turns grey and blovks my vision. Light seems to make it worse and I am nauseated (but with the gastroparesis the nausea may not be from the headache). Until today I have been hibernating in my bedroom in the dark, today I thought it was a bit better, so i would try to post on it... Has anyone experienced a headache or migraine like this? Tylenol is all I can take as I have such severe gastritis and ulcers. Just wondering if anyone has any similar experiences or suggestions. Luckily I seem my internist on Thursday. Thanks in advance for your thoughts, Sheridan