Sophia3

Yes, I have had this since I was a kid....I also get low blood sugar once in a while from stress and hunger but not as much as I used to.... These days HAVING an appetite to eat is tough...but I MUST STAY AWAY from "fat free" high carb foods. I get sick within an hour or two. It's dreadful. I do best eating higher fat snacks with carbs or making sure I have some protein with snacks. Eat small meals. Watich caffeine if you drink it on an empty stomach. Messes up the blood sugar as well in some people. This is all second nature to me. There is much to learn about it and just enlightend yourself about the glycemic index of foods and it will be ok. ~~~~~~~ There are many differing degrees of 'glycemic indexes' depending on the person who makes the list. Many have agendas behind the food they push. Also, you have to try a diet that works for YOU...though watching the carbs and fat/protein combo is the biggie. Sugar isn't necessarily the enemy if you BALANCE IT IN MODERATION. Bagels used to make me VERY ILL though you will see some people's lists calling them "good carbs"...but it's not true so it's a very complex subject and you have to read up on the GOOD NUTRITIONISTS with no political agendas. Starch/sugar can hit the pancreas the same. TOO MUCH watermelon makes me ill and it's "natural". Asbestos and radon are 'natura' but they ain't good for you either but I digress!! Here are some sites to help you read up on the subject. http://www.gicare.com/pated/edtot19.htm http://www.hcf-nutrition.org/diabetes_dise...ia_article.html http://www.truestarhealth.com/Notes/1034003.html

I just read this at NDRF and came here to post the update myself. I hope things continue to go well the next few days. I got a card to send out tomorrow and I hope he gets it and all the other well wishes. This is SO tough for Linda and the children as well.

A few years ago, Linda and Dan were most generous with email and telephone time with myself, and others. I made that board part of my daily life, though many familiar names have long since gone. The NDRF foundation saved my sanity many times due to the hard work of Linda and Dan and the VITAL information provided there and on video. As posted on NDRF, my thoughts and prayers are sent to Linda and Dan. I think of them daily and even throughout the day. Thanks for posting the hospital address Nina. I will get a card the next time I am out!

Cloer than Dr. Grubb is Dr. Francis (frank) Collins in Cherry Grove on Rt. 125 Ohio Pike aka Beechmont Avenue. He is with Queen City Physicians. He is an endocrinologist and Internal medicine doc. I got his name years ago and wrote a letter to him explaining my situation in a nutshell. It can be a 6 month wait to see him but he is closer than Dr. G and knowledge about ANS problems in general. The first thing he did when he saw me, years ago, was give me a poor man's tilt..and after a year or so, finally ordered a real tilt test that confirmed my problems were ANS but we had still tried all the meds and then some. He takes his time and is very open to alternative stuff as well. You may want to call his office and see if he will see you. I do not feel comfortable posting his number here.

Chad First, congrats on the record deal. Second, PLEASE be careful how you label FUTURE threads. Most of us old timers that have been around for YEARS with this illness are VERY SKEPTICAL of miracle cures and the lot. Like Morgan says...if it sounds too good to be true. Also the etiology of each case of POTS can be completely different, hence a 'one size fits all pill-fix-cure' isn't likely. So, it's one thing to be hopeful but another thing to send false hopes. Not that YOU knowingly posted false hopes but a doctor or somebody obviously did.....so, well, lesson learned.... Good luck with the music gig. Peace

As far as the review process..the paperwork is VERY TAXING and stressful...so that is a given. Just don't take it personally. Also it is helpful to see a doctor regularly and even a psychologist since SSD (Social security disability) LOVES to make people see a shrink or a paid wh*re as some of us like to call them to 'do a quick mental status evaluation.' Just make sure your doctor and counselor understand your limitations! That is the key. not the name of your dx but the specifics of your limitations. Try and relax until you get the review! I have been through 3 reviews in 15 years and the one last summer started with a short CDR paper. FOLLOWED by nothing for 7 months and a long review, several pages. THAT was followed a month or two later but TWO HUGE detail questionnaires...Daily living function or something and another thing. It was HORRIBLE and I called to ask for more time to fill them all out. They are famous for drumming up more paperwork. So it is just part of the game. Just be honest with yourself about your situation and find a good doc. A therapist isn't a MUST to see regularly but it can be very helpful since any normal person needs help in learning to deal with chronic illness. Hope this helps more than it aggravates!! Just relax for the next 12 months.

yes, a short time for a review is possible...depending on what you were given the disability for....if medical improvement is expected, could be 6 to 18 months. I found this answer quickly by doing a search...from ssa.gov website How often will my medical condition be reviewed? The frequency of reviews depends on the nature and severity of your medical condition and whether it is expected to improve. If improvement is expected, your first review generally will be six to 18 months after the date you became disabled. If improvement is possible, but cannot be predicted, your case will be reviewed about once every three years. If improvement is not expected, your case will be reviewed once every seven years.

Dr. Grubb said to expect HUGE changes, probably worse after menopause. I am 48. I am FIGHTING the urge to be bedridden and he said I was doing all I could to avoid that....I have dreadful amounts of energy but push on my good days. My dreams of working even part time again died YEARS ago...so I take it a day at a time...or an hour at a time. My last few periods have made me TOTALLY ill...especially my latest one...so I am concerne greatly of the hormonal connection.

Just caught the end of the Dr. drew show and the woman with dysautonomia was on...she mentioned she faints...and he said to talk to doctor about her meds AND making sex a priority and to nourish the relationship. Easier said than done and the ANS system is the system RESPONSIBLE for a person reaching orgasm. Meds can mess with that but so can the ANS alone. Very complicated to fix and more things than just romantic settings are needed to fix it. Still, it was nice to see somebody use the word dysautonomia on tv.

morgan For low cortisol, do you look tan? If not examine the lines inside your hands...to THEY look tan. Mine do a bit and my doc noticed it years ago, but we have checked several times and cortisol tests 'normal' though it can spurt abnormally in between tests and not be 'caught' says my endo. Also, be careful with the insulin induced test. I asked my endo about that years ago (forget the reason, now) and in my case he was afraid I would have a seizure...so asks your doctor the risks of that ... I had seizures a couple times as a kid from hypoglycemia so maybe that is why he was leary of doing that to me. Maybe you are aware that that is a risk if so never mind. I hope you get some answers.

thank you all and I appreciate your response. my mother took the news extremely well as she suspected something wrong for a long time. My siblings said I did a great job leading the family presentation. I spent the night with my mom and she is mostly her old self but she DOES LIE so that is the problem. If we aren't there to witness it, she can lie about taking the dose. She is still self sufficient but I know the hardest news what will hit as she gets stronger is she can no longer drive. that was something she mentioned in the last 6 months, she knew her driving days were numbered and she never LEARNED to drive until my father died in 1990. We are starting meals on wheels wednesday and my sister in law will be ther for that. She has food in the house and plenty to drink. I finished up some laundry and asked she stay out of the basment. She is truly lucid as she has been for months. The pathological lying has always been a problem but much worse now. Last night she promised to do whatever it took to KEEP HER AT HOME AS LONG AS POSSIBLE. Then, today, kept hedging about if she has to take the medicine&^%$#@! I did cut the risperadal in half because she half fell out of bed last night when I woke her up. Orthostatic hypotension is a problem so we cut her back until we find her a PCP. Also holding off on the Aricept because BOTH cause DROWSIENESS and one causes dizzieness?!?!? we want to keep her clear and indepenedent not a zombie! She is most sensitive to meds so we are giving her just the synthroid and risperdal for a week and see how she does. THEN adding the Aricept, and only a partical dose of that to work up to whole pill. So it's all a long journey one step at a time. I have a consultation with an attorney on Wed because my mom's attorney is out of town for another week. I just want some feedback of what is true and what's not true to protect the house, our mother while she is STILL CAPABLE of making and sharing her decisions. Thanks again for your kind words of support. Sophia

The acute care hospitalist refuse sto tell our mother she has early Alzheimer's dementia. she is very lucid much of the time with a big story or hallucination thrown in once in a while. "hospitalists" says it's the job of her PRIMARY doc to break the news....but she has no primary as she hasn't seen him in over 3 years. so it is up to my two siblings and I to tell her tonight after she gets home. I think this stinks but I have realized we have to be our own advocates as we can ONLY COUNT on the spirit/intelligence/energy/faith or whatever, within us, when the chips are down. I am not a religous person but if you want to send a prayer or positive thoughts from the Lord, from God, from the great Universal Spirit that ties us all together, PLEASE send them to southwest ohio to my mother. Her name is Juanita. Ask her mostly lucid mind to be OPEN TO SEEING A DOCTOR and TAKING MEDS....our BIGGEST challenge as she despises both. But we will tell her we wish her to live in her house as long as possible and not in a nursing home and right now, she has the choice to make that decision and seek advice from her attorney with me to help her. We hope to talk with her 6:30 or 7pm Eastern time. She is with it enough to want to protect her rights, her financial situation and see her attorney about this. As painful as this will be for US to witness, it will be agony for my mother to realize what is happening to her and the pain she will bring her kids, though we all know she doesn't choose this. But it is very tragic. Thanks for listening Sophia

update: Long story but we really think they PREMATURELY deemed my mom INCOMPETENT while still dehydrated and low on thyroid medicine. Either of those alone can cause pychosis in elderly! They deemed her this within 48 hours from ER. My mom has been clear and lucid for days now and understands things FINE. So my brother and I decided we are going to send her HOME and rotate checking on her every day among the 4 of us, get a 911 necklace and try meals on wheels. A neighbor or two are willing to help out. WHAT A RELIEF!!! And my therapist thought it kind of bogus some "Hospital MD and or attorney/MD" signed the "deemed incompetent certificate" w/o examining her HIMSELF??? We are no Pollyanna's and know that my mom can be difficult but we are going to encourage her to find a NEW DOCTOR and take her Synthroid at least a few days a week...it does make her feel rotten but as long as she takes it a few days a week, it does help. Her brain may be shrinking but that can happen more in elderly and ALzheimer dx is usually saved for when "you don't know what a car key is for" or you don't know how to care for yourself at all or get lost. My mom is sharp as a tack most times and does really well playing WHEEL OF FORTUNE!! on tv ...now granted, she is a pathological liar but that is more an underlying personality disorder or functional mild bipolar disorder. So we still have other issues to address but she understood when I explained about the HMO that flim flammed her and I am getting her removed from that. She understood the need to protect her assets and ad me to her checking account. She was quick witted and funny. So NOW, I could get really MAD about the hospital deeming her incompetent...but the nurses treated her wonderfully, were very nice to all of us so we don't want to make a stink. Besides, we would all argue this isn't right. And when she is HOME, I am going to track down the doctor who signs these papers and tell him she was PREMATURELY dx ALZHEIMERS and would he like to come see my mom and explain HIS WORK ethic, LOL. Just thought I would share

Thank you Kathy Actually, my mom has no real doctor. She hasn't seen the doc for her thyroid in 3 years and rarely takes her meds.... I think she definitely has signs of dementia though was severely dehydrated and hypothyroid when admitted adn they made the diagonsis within 24 hours...then the last 24 hours she has had lucid conversations talking about things from 20-40 years ago and wanted me to get her checkbook so she could sign them and we could pay her bills. So SHE IS LUCID AT TIMES FOR SURE. We were going to seek guardianship but too costly. Since she is clear now, and the nurses have seen it, I really don't think it would be a problem for ehr to sign for POA. However I just heard from an attorny on a message board since mom is dx with dementia, any transfer of title may not be legal. I WAS GOING TO BE GUARDIAN and I can't very well give the house to myself. BUT the lawyer says there may be loopholes...like my mom was leaving the house to the 4 of us kids though my 3 siblings want nothing to do with the house. In cases of disability liviing with pt, the 3 year Medicaid look back "can" be waived. HOWEVER, if the house is awarded to me as a lifetime estate I COULD NEVER SELL IT DOWN THE ROAD because after the real estate taxes, I would have to THEN PAY MEDICAID BACK...so I can't afford to live there now but could with some help from family. Gosh, this is all so complicated. Thanks for your response. S

Alzheimers dementia. Been back and forth for a long time. She still has moments of lucidity but now that she is feeling better in the hospital, took out her IV and refused meds. However, she was very clear today and nice and has been holding good conversations for days....but still lying about taking her meds. The change in hospital doc just took place and the nurse told me he did not comment my mom had not taken her synthroid or psychosis meds for two days!?! Nurse said my mom was being so nice about it, she didn't want to FORCE HER....mom doesn't know her dx yet. We hope to tell her as a group with the doc present but that's no easy feat. They suggested we get temp emergency guardianship but can't afford to do that ($800~ and an indigent attorney was SO HATEFUL when he found out she own a small home, said WELL SHE ISN"T INDIGENT THEN...so I told him sorry to bother his time but he was OBVIOUSLY NOT THE MAN FOR THE JOB and hung up on him...he didn't even try to defend himself but I digress...got his name from Soc Worker and told her not to give his name out again) Then in 30 days would have to repeat costs or more, to get extended Guardianship. So will fill out Durable Power of Attorney first since today ran into road blocks.... Even with that, she can refuse meds. Last time in 2001, she was in hospital, they had to put her in restraints to take IV and give synthroid meds thru that. This time, they are being nicer to her and letting her skip a couple days. She was dehydrated then and more so now...though still has a pattern of behavior. Also were shocked to fiind out the psychiatrist thinks she has functional bipolar her whole life....which explains a lot of my mom's behavior...compulsive shopping but stays within her means....screaming spells, up and down moods. however, my mom told the shrink to get out and stop asking stupid questions....she also told the other doctor off that she didn't need an IV and he said she did. So we haven't seen the new doc yet. But gosh, low thyroid can cause dementia but this doc said her values weren't off enough for that..but she is so sensitive to the med she rarely takes it. (oh, the bipolar dx was from a long history of moms behavior from my sister, me and the hospital staff) So even with Power of Attorney, or whatever, my mom is NOT going to cooperate. however, the doctors have not yet told her the offical dx. She has no regular doctor...or she hasn't seen him in 3 years and only saw him 2 times total. they can't just RELEASE her. She is waiting to go to interim place in a couple days...and hopefully be stable to go home...the way she has been the last couple days she COULD be home...with meals on wheels started, a 911 necklace and us checking on her....and some neighbors. I would go over a couple days a week since her rages and moods me out of there. What are the laws in Ohio about taking the home? I was told and read in a Montana long term care web site, That if a dependent or permanently disabled child of any age is living in the house, they can't take the house--if we put it in my name soon. At least it said Medicaid usually won't take the house on the look-back -of three years. I just moved out a couple months ago but just changed the mailing address last month. Otherwise, if you transfer title, they get suspcious and dont care if you are trying to hide assets. My siblings and I would go over to help and maybe spend the night when she progresses, obviously. ALL MY furniture is still there. My mom's attorney is out of town until Aug 9th. Anybody know about this kind of stuff? We would like to try to help my mom stay balanced and go in and out of hospital every 2-3 months and get the 20 day reprieved with MediCARE in interim care and stay in her home..But she has to stay out of hospital at least 2 months....and let Medicaid help out since her income is very small. Anybody have experience with this? Thanks...this is all too much..

thanks it took an hour or more of being on the phone but when I explained the situation, they are going to disenroll her the end of this month. AND do an internal investigation of how my mother was mislead about this switch. I just sent a fax to confirm the disenrollment. She HAS ALWAYS HAD MEDICARE..it automatically happens when you are disabled or turn 65. Yes it was her part B plan.

Anybody familiar with United healthcare HMO?? They are supposed to give "financial benefits" I guess but severe limitations. My elderly mother is in a hospital with intermittent dementia and needs to be placed in a nursing home for a few days/weeks to get her stabilized because she is too out of it to go home. She is lucid sometimes but still in and out. She thought she only had Medicare insurance. Come to find out, she has UNITED HEALTHCARE medicare. They signed- our then 82 year old mom-- up in 2001 w/o explaining things to her or having one of her kids present. This HMO "Benefit" we just found out, wants my mom to pay $100 a day out of pocket for short term nursing care stay for 36 days? That is a $3600 deductible on top of the current HOSPITAL bills and major tests!? Plus we are limited to only 6 nursing homes and none we are familiar with&^%$#@! Medicare would cover 100% up to 20 days in interim care? This is a flim flam job and my mom is on a tiny income. She is not aware of the problem. I am going to call up these UH Care people and let them have it and demand they remove her immediately. Time is critical and of the essence according to the doctor and the psychiatrist. We want to give my mom a chance to stabilize so she can go back to her HOME and live instead of having to sell her home and ban her to a nursing home...but she hates doctors and meds but needs both for dementia and agitation problems. Have you ever heard of an HMO signing up an elderly person without coming to the house???? If they did this, it was w/o our knowledge and my mom has no clue this is even a problem. She can be sharp and with it most times (until recently, of course ) but out of it when overwhelmed with information. I am livid. Is there somebody to complain to about an HMO switching an elder person w/o giving them the fact? We are OUTRAGED as a family. Thank you, I am not yet in an emergency guardianship but we as a family are LIVID!! If you can help or have been in similar situation, please let me know.

Sorry to hear your diagnosis. My thoughts and prayers to you through all of this and be kind to yourself.

From another site...Not my words but excellent advice. One of the advantages of having an attorney is that attorneys know the law. Much of what is at issue at a hearing are the legal fine points of your case. Law firms also have others who assist the attorney with things that will help your case, such as obtaining and reviewing the information in your file and getting additional information organized to be presented to the ALJ. Attorneys who practice Social Security law will probably know the ALJ at the hearing and what to expect from that ALJ. An attorney familiar with the ALJs can look for evidence that is just the type of information the ALJ favors. That is learned from experience. If you are well enough to take care of your own case and prepare for a hearing, you could be working in an attorney's office, while you claim to be unable to work. It makes no sense to demonstrate so much competence, and if you are not that competent, how will you do it? Hearings are not for amateurs. The medical exhibits may be discussed, and if there is a Medical Examiner, he has probably been doing this for years, so an attorney is needed to respond to what he says. The ALJ will be asking questions, too. The Vocational Expert will reply to the ALJ's questions, and an attorney can respond to what the VE says. Unless you been trained as an attorney, it is better to pay an attorney or representative. When choosing an attorney to handle your case, be sure he knows what he is doing by asking your doctor or a local support group for referals. Ask the attorney if s/he has handled many hearings for others with your illness. Ask how much experience the office staff members have. Also see how well you seem to get along with the attorney, since your fate may be in his/her hands.

thanks for finding this article and sharing it. Most interesting.

Deb, My first question is did you ask your doctor why you need to see one? Usually there is a hint something is amiss in endocrine system? Did some lab values come back screwy? Often times my endo knows more about female hormones than any OBGYN I saw over the years!! Here is a short blurb on what an endo is...what he DOES during your appt depends on the specifics of an individual situation. Hope this helps. What is an Endocrinologist? First, let's take a look at endocrinologists. An endocrinologist is a doctor who specializes in the endocrine system. (The thyroid gland is part of that system, which also includes the neuroendocrine glands of the pancreas, the parathyroids, pituitary gland, ovaries, and the adrenal glands.) A typical M.D. will spend some time -- but not much -- during medical school studying thyroid gland physiology and the common disorders of the thyroid. Endocrinologists, by virtue of their continuing specialized education, are required to spend more time studying and focusing on thyroid issues. The main concentration of most endocrinologists, however, continues to be the diagnosis and treatment of diabetes, and research into diabetes treatments and drugs. Many endocrinologists specialize in the treatment of diabetes, and only a small number of them consider themselves specialists in thyroid disease. Endocrinology is a specialty that tends to be overly reliant on tests and numbers. Tests and results are often the main focus on endocrinology treatment. In particularly, the blood sugar levels of diabetes, and the TSH, T4, T3 and other various thyroid blood test levels, tend to drive the diagnostic and treatment protocols to a large part. There are good endocrinologists who have excellent patient skills, and who work well in partnership with patients. You will need to be very careful to find the right endocrinologist, however, one who is patient-oriented, open-minded, up-to-date, and who has good bedside manner and people skills. This is not always an easy task. Frequently, patients have complained to me that they are viewed more as a lab value than as an actual person who is suffering with symptoms. This attitude can be a downside of going to endocrinologists, who are sometimes referred to as the "accountants of medicine," given their passion for the test and numbers and levels. Endocrinologists are also more likely to carefully follow the very conservative diagnosis and treatment protocols as outlined by the American Association of Clinical Endocrinologists (AACE), and very few incorporate complementary or holistic approaches to diagnosis and treatment of thyroid disease.

Morgan I am SO GLAD you found a doctor that is knowledgeable about your illness. I shall look forward to your next update with anticipation. I hope he can find SOMEThING to explain things or to help you. S

Jenn I am so sorry of your atrocious treatment from the horses *** of a doctor. The arrogance of such a man is STAGGERING. Many of us, including me, have times where we literally can pee every 10 minutes. OFTEN, I awaken to empty a full bladder...get back to bed and in 2 minutes realize I have to go again and there is a lot more to come out. My answer was DDAVP since I am OBVIOUSLY low on the ADH (anti diuretic hormone as you COULD be though I am no doctor) Many POTS patients with "diabetes insipidus-LIKE" symptoms benefit greatly from DDAVP taken PROPERLY. I can NOT believe it didn't enter that so called SPECIALIST head that you could benefit from the same thing. It's not like will power or mind set to lose weight. We CAN"T CHANGE OUR KIDNEY OUTPUT (aside from the obvious to cut back on caffeine) But still, if your ADH is messed up you will NEVER KEEP the electrolytes even and either stay dehydrated or be on the verge of it. I would say more on this subject but there is really nothing to add except I think you should post elsewhere (not this site!) this doctor BY NAME so others don't waste their time. This is MOST INSULTING to you and other potential patients. This isn't the place to point fingers by name though I personally think it's ok. However, I have also heard high praises and high insults ABOUT the same doctor by different patients...so these guys must have split personalities or run out of "Nice and compassionate" juice for the day. I wish you better luck. SOON.

Julie I am glad you got some answers from Dr. H. I don't envy your surgery but its sounds like you truly need it.

Morgan Good luck with your endocrinologist appt. I will be curious to hear your update. Sophia