mwise

Lieze, Sending you lots of prayers and hugs. As many posters have shared, you need to put your health 1st so you can be able to take care of the kids. You are at a crisis weight and need IV nutrition. To get this quickly, you need to be an inpatient to get started so they can regulate you and once they stabilize you, they can send you home on what they call Total Parental Nutrition (TPN) through an IV Port or Catheter or Tube feeding through a Peg Tube which you can do at home with a home care nurse and even manage yourself. Seeing a Psychiatrist can also help with getting you on medication(s) for the anxiety and stressful feelings. Again, once you are stable, you can follow-up with a Psychiatrist on an outpatient basis. I am hoping you have a strong family or friend support system and need to call on them to help with the kids as soon as possible. Hang in there and stay on top of this:(

:rolleyes:I would recommend getting a chest xray done to confirm if you have TB. As a previous poster stated and being a health care worker, there are false positives for TB in not only health care workers but people in general d/t being exposed somewhere along their life time. I would hate to see you go through unecessary treatment with a false postive. Good luck and prayn your test was a false positive.

Hi Cats, I don't know how it works with plates, but I just got the handicap sticker/sign with a phyician's prescription stating a diagnosis of Autonomic Neuropathy listed along with asking it be issued for 5 years on it at the DMV with no questions asked. I just filled out & signed the papers they gave me & paid for the sticker/sign. I actually purchased 2 to have in 2 different vehicles so I don't have to move it from my husband's truck to my car. I would think you shouldn't have to much problem since your physician filled out the paperwork. Most physicians have done this before for other patients. Good luck and will be praying for you:)

Lieze-you are definitely not taking in enough calories to gain weight. I highly recommend you see a Dietician. The Dietician I saw from the Cleveland Clinic was a great help to me to find the right diet and caloric needs for a 30lb weight loss in 10 months along with having Gastroparesis and Diverticulitis. I also recommend you purchase the book, "Calorie Fat & Carbyhdrate Counter" by the Calorie King. He is a Dietician and has a web site: www.CalorieKing.com It helped me count calories so I knew how much I was taking in on a daily basis. I actually gained 5lbs in 3 weeks. I enjoy eating again especially out at resturants. It sounds like you are able to tolerate fatty foods and drinks. I would recommend you drink more high protein drinks like Ensure, Boost, milkshakes if you can drink milk or subsitute with almond or soy milk, make your own smoothies, carnation instant breakfasts, health food store protein mixes, fast foods; french fries, double cheese burgers, etc...This will help you gain weight. Good luck and keep us posted on your weight gain.

Hang in there Lissy and don't be afraid to try Florinef or any medication or combination of medications. If it means getting your life back to some normal state, than I say go for it. Unfortunately, I was unable to take Florinef. I had severe side effects of extreme weakness, increased shortness of breath and swelling. Of course at the time, my intake of fluids and salt was poor which probably didn't help matters either. If you look back on some previous posts about Florinef, several members have had good luck with it. It took my Neurologists and GI doctors to get the right combination of medications and diet to get me started back with some quality of normal life. I was put on Mestinon 60mg 3xday, Midodrine 5mg 3xday, Domperidone 20mg before meals and at bedtime, low fat/low fiber diet (small meals) along with drinking 1-2 liters of fluid a day and setting small goals each day that I went from being bed bound to walking up to 2 miles a day (use of a pedometer & frequent rest periods). I am now even working again. I encourage you to talk it out. Don't hesitate to seek a professional (Counselor) to work through your fears. They are trained to deal with these things. It helped me believe in myself and work through my anxiety and fears. Again I say go for it. Good Luck and keep us posted.

Tinks-go see the GI doctor. Don't be afraid to tell him or her it all. The ones I see at the Cleveland Clinic were very empathic and got me on the right tract with medications for both constipation and for Gastroparesis. I had severe constipation with bloating and pain, which my Neurologist @ Cleveland Clinic stated that it was from my autonomic neuropathy-another words all the nerves in my body are damaged and all signals from the brain are slowed way down so food and waste products move very slow to not at all through my system. When I would finally have a bowel movement after not going for a week, more like a big dump (going with continuous flushes of the toilet to get it all down), I would be completely worn out let alone having a bottomed out BP. The GI doctors put me on a regimen of Miralax 1-2 capfuls a day to get me going along with drinking 1-2 liters of fluid a day. It worked beautifully after about 4-5 days with me now only using Miralax 1capful 1-2x week. I have bowel movements smaller, softer and more often, but it beats being constipated. The GI doctors also fixed my Gastroparesis (nausea, bloating, pain and feeling like I would pass out with eating). They put me on a regimen of Domperidone 20mg before meals and at bedtime (I get this medication from Canada) and had me see a Dietician to get me on the right diet; low fat/low fiber because I have Diverticulitis too. I also purchased a good book by the Calorie King, "The Fat & Carbohydrate Counter". The Neurologist has me on Mestinon 60mg 3xday which also helps with motility. Between the Domperidone, Mestinon, being on a low fat/low fiber (eating small meals) and using the book, I have no more symptoms of bloating, nausea, etc...from eating. I am actually enjoying meals and even eating out again. I have even gained 4lbs in about 3 weeks after a 30lb weight loss in 10 months. So I say again, Go see the GI doctor. Good Luck & keep us posted.

Welcome to the best forum!!!! I am like Godsgal, I try to educate people on my condition that I may look good on the outside, but my insides say differently:P I just want to be true to myself and others. I am thankful to be alive each day. I take it one day, one hour, one minute and one second at a time. I do a lot of praying and thank the good Lord for my life on this beautiful earth. I do tell family, friends, co-workers and others when I am having a really bad day and when I am having a good day. It helps with love and support. To heck with the house and other daily activities. I do what I can when I am feeling good and when I am chair, couch or bed bound this is where family and friends pitch in and help me. I have become very humble and not afraid to ask for help. You would be surprised at how many people enjoy being helpful. Again, welcome and a great big hug to you:lol:

I take Midodrine 5mg 3xday, the generic brand made by Mylan Pharmaceuticals-white, round, scorable 2.5mg tablets. I tolerate the side effects of goose bumps, skin crawling and head itching, but the benefits to be able to walk and do things out weigh the side effects. Let us know how the new generic brand by Upsher Smith works as it is good to have other generics available.

Dani, Just know you are loved by all of us and that little girl of yours. We all send you great big hugs. Hang in there. Take it one day, one hour, one minute and one second at a time. We all know how you feel and have been and at times are still there feeling how you feel. T There were days when I was completely couch, chair and bed bound that I would not only cry but get angry at God and the world for this disease. Hope was the last word I wanted to believe in or even hear. Than I would have a moment of feeling normal and all would be right again. I would tell myself that I am beating this disease and will keep fighting to get better. Talking with a friend of mine who does counseling helped me set little goals and accept that I will have good days/times and bad days/times. It was good to hear that you were able to go to Target. I am still working toward being able to go out to stores even if it is for a short periods of time and a use of a rollator walker. I also feel that your hormones probably are still out of sync from the pregnancy and caring for an infant is exhausting. So don't be too hard on yourself. You have a lot on your plate which is stressful enough. If you are open to medications, there are a lot out there that can help you have hope again. Remember you are not alone. We are here for you and just take it one day, hour, minute and second at a time.

I wasn't able to tolerate Florinef either. I had similiar side effects along with feeling weaker. I am taking Midodrine 5mg 3xday. I also take Mestinon 60mg 3xday to help with blood pressure and motility. It helps also for muscle weakness. I also do some homeopathic treatments that include taking a high potency Multi-Vitamin, extra supplements of Vitamin B and Vitamin D, a probiotic, Moducare capsules 3 a day to build my immune system and I am going to add Alpha Lipoic Acid to help with my nerves. All was gotten at a local health food store. I have read on the forum that a lot of individuals are taking CoQ-10 that have POTS. I also added low fat peanut butter along with cinamin in my diet for energy. I do believe in eating the right diet can help. I do take extra salt (a teaspoon of salt to a pint of water) and utilize salt tablets if I need. I also spend time reading the bible & in prayer. I feel the combination of meds, homeopathic treatments, prayer(bible reading) and diet play a part in me feeling better by being able to walk and to do little things around the house. Hope you can find the right combination for you to get you back on your feet.

I am with everyone else. Small meals with yogurt smoothies in-between. Drink lots of fluids to stay well hydrated too. I also recommend working with a Dietician to find the right diet for you. Did wonders for me since I have GERD, Gastroparesis and Diverticulitis. I recommend getting the book, "Calorie Fat & Carbohydrate Counter" by The Calorie King. He also has a website: www.CalorieKing.com helps with showing foods fat and carbohydrate content. Best book I purchased. Good luck with finding the right diet for you.

Dr. Shields from the Cleveland Clinic said to drink at least 2 liters of fluid a day. I make a mixture of salt water; 1 teaspoon of salt to a pint of water. You can add a teaspoon of sugar to cut the salt taste and works just as well. I also drink power drinks (gatorade, vitamin water) along with fruit juices, 1-2% milk, yogurt smoothies, etc...I also supplement with salt tablets if I need to help keep my blood pressure up. I do eat snacks with salt along with salting foods that I eat. I am glad to hear Florinef is working for you. I wasn't able to tolerate it. I am on Mestinon 60mg 3xday & Midodrine 5mg 3xday. Good luck with your fluid & salt intake.

I agree it could be a dumping syndrome, delayed stomach emptying or some type of gastric problem; Gastroparesis. I have Gastroparesis and can't drink Ensure, Boost or any generic supplements because of the High Fat Content in them. The pain, bloating and discomfort was horrible. I also have Diverticulitis. I worked with a dietician to find a diet right for me. I also purchased the book called, "Calorie Fat & Carbohydrate Counter" by The Calorie King to help with knowing the fat content in foods especially fast foods when I do eat out. I am following a lowfat/low fiber diet with small frequent meals and yogurt smoothies in between. This really helped settle my stomach (no more pain & bloating) by being so much easier to digest along with getting some weight back on. I buy everything low fat or fat free. There is a pretty good choice of foods out there that are low fat or fat free. I also found yogurt supplements; Daminals by Dannon and Stoneyfeld Yogurt Smoothies that I have no problem drinking. Other fluids that I supplement with include (power drinks) Gatorade, V8 Infusion and fruit drinks. I am also taking Domperidone 20mg before meals and at bedtime for the Gatroparesis along with a Probiotic 1 times day. The Domperidone helps with stomach motility and nausea. Have you had any GI testing or seen a Gastroenterologist? You may want to do some research for dumping syndrome, delayed stomach emptying, etc...You may also want to follow-up with a dietician for a diet right for you. Hope you can find relief soon.

I can empathize with you because I am a Registered Nurse also and know how it feels not to be able to work and over whelmed with feeling so sick. I am on short term disability because like you, I was symptomatic basically bed bound with extreme weakness, fatigue, unable to eat, feeling bloated/pain when eating, had a 30lb weight loss in 10 months, etc...The results of my TTT showd severe cardiovagal and cardiovascular adrenergic dysfunction and a QSART findings consistent with sympathetic sudomotor abnormality giving me a diagnosis of Autonomic Neuropathy (Orthostatic Hypotension Dysautonomia) in Dec. 2010. I follow with Neuorlogists at the Cleveland Clinic in Ohio. I was initially on Florinef .1mg qd, but had such bad side effects, that it was stopped and now I am on Mestinon 60mg 3xday (helped with stomach motility too) and Midodrine 5mg 3xday. The Mestinon and Midodrine has got me back on my feet to going from being basically chair, couch & bed bound to walking around the house which includes going up & down stairs 2 miles a day (Pedometer). I sometimes use a Rollator Walker (has a seat on it) when walking when I feel a litte tired. I am now able to drive a car again and may be returning to work soon. It just may take some time for you like it did for me to get me where I am now. I would continue to follow up closely with your doctors about a specific diagnosis, medication changes, diet, activity and testing. Ask lots of questions. The Internet is a great resource. With the help of the forum, I am hopeful you will get your quality of life back like I am doing each day. BTW-I think they should do a study of how many of us have had our Gallbladder's out and have Dysautonomia. I had mine out in 2005 and never was healthy after that.

I started with isometric excercises (gotten from a physical therapist who works with a Chiropractor) sitting on a chair or floor and/or lying on the bed or floor. I was doing 1 or 2 to now doing sets of 5-10 (8 different excercises). I slowly progressed to walking with a Rollator Walker (has a seat on it) wearing a Pedometer to measure how many miles I was walking. My walking does include going up & down steps/stairs, which I was only doing 1-2 steps. I am now walking without the walker and am up to 2 miles in the house including going up & down 12 steps which includes a landing(break) than another 5 steps. It has taken me over a month to accomplish this fete. The days I few more fatigued, weak and symptomatic, I do less such as only isometric excercises . I take frequent rest periods in-between. If anything, it makes me feel better not only physically, but emotionally knowing I am getting some quality of life back (independence). I would recommend checking with your physician for an excercise plan/program. He/she may make want to make a referral for a physical therapist to work with you on a plan/program specific to you. Hope this helps.

I had an abnormal CBC (low blood count) & Anti-cardiiolipin antibodies, but didn't have the high bilirubin. I also had both an abnormal TTT & QSART along with being symptomatic that confirmed my diagnosis.

I agree with you that she needs to see someone specializing in Dysautonomia ASAP. It is horrible to feel so sick and not know what is causing it. She needs to see her GP and ask to have a TTT along with getting her in to see a Neurologist and/or Cardiologist that is familiar with Dysautonomia. If she lives in Ohio, I would recommend Cleveland Clinic or Dr. Blair Grubb up in Toledo. I also heard if you live in Columbus, they have good doctors familiar with Dysautonmia too.

I am taking a combination of Midodrine 5mg 3xday & Mestinon 60mg 3xday. The only symptoms I experience with the Midodrine is the goose bumps & itchy head (parathesia). I can live with them cause it really got me back on my feet. Darn FDA-they better not take it off the market.

The Whole body PET scan on Wednesday did include the head (brain). They were looking for tumors-none found.

Sorry to hear that. I have been using a generic form (Midodrine) for weeks now with success. Give it a try. It might work just fine.

Google PET scan and you will get some good explanations on it. I had a whole body PET scan yesterday as they were looking for cancer as an underlying cause of my autonomic neuropathy.What they were looking for were hot spots on films showing the cancer. BTW-My results came back negative which is great, but we still don't know what caused my dysautonomia. We think viral to date.

I had to keep trying different combination of things to find a balance for my low bp. I find keeping water by the bed helps especially if you mix a teaspoon of salt in a pint of water. I wake about every few hours during the night and drink the water sometimes with the salt or without the salt . A bottle of Gatorade or power drink works great too. My bp at night has been up around 90s/70s. I also take Midodrine 5mg 3xday (last dose at 5pm) along with Mestinon 60mg 3xday (last dose at 9pm). I would ask about uping the Midodrine as initially I was taking 2.5mg and noticed once on 5mg my bp went up another 10 points. You may want to ask to add Mestinon or Florinef which could help in addition to the Midodrine. I do sleep upright and sometimes sleep with a pillow under my legs to elevate my feet/legs if I am feeling like my bp is really low. I also take B12 sublinqually in the evenings to help with energy. Hope this helps:)