BuddyLeesWife

Grilled Chicken w/ Tomato-Avocado Salsa Salsa: 4 ripe plum tomatoes, coarsly chopped (I used grape tomatoes halved) 1/2 small red onion, finely chopped 1 jalapeno pepper, seeded & finely diced (I omitted) 2 TBLS fresh cilantro, chopped 1/4 cup lime juice 1/2 avocado, large dice Marinade: In a small food processor (I used a hand blender) puree together 1/2 cup non-fat plain yogurt 1/2 small red onion 1/4 lime juice 1/4 fresh cilantro Marinate chicken for 1-8 hours refrigerated (overnight was OK) Chicken 4 boneless breasts Season w/ salt & pepper, grill and serve with salsa

We will be there on May 3rd at 4:30.

We skip right on by the Degtroit Metro area and go to Dr. Grubb in Toledo.

He hasn't been tested for Mastocytosis or Mast Cell Activation - I will ask the doctor on Monday. I will make sure to post anything we learn about the rash. Up to now, the doctors have dismissed his rash too - actually he was given a topical steroid cream to calm it down but it really goes away on it's own once he has rested.

I've written before that when my husband is feeling the most symptomatic a rash appears on each cheek - it looks like a curved vertical scratch, about 2" long and finger width. Not itchy or bumpy or raised, just red. He was in a meeting this morning and one of the women kept trying to get his attention to let him know they just appeared again. The only thing I can find is the Lupus Butterfly Rash but it does not look like that. From my limited reading of Rheumatoid Arthritis it looks like that can sometimes cause a rash but I don't know the specifics. He is seeing a rheumatologist for the first time next Monday so I am going to take a photo of him tonight for that meeting. If you have ANY ideas please let me know. Also if you know of any website where I can locate a photo of the specific rash that would be great. THANKS

Before being correctly diagnosed, my husband was prescribed Xanax and when his symptoms continued, the dr. kept increasing the prescription. We didn't know any better and he was taking way, way too much. In fact, the Xanax was bringing on the same symptoms we were trying to diminish. Once diagnosed with NCS and depression, he was started on different medications but first he had to wean off of the high dose of Xanax. His body had become dependent and it took about 6 months to wean down to an appropriate level of the drug. He has continued with a low dose of Xanax for the past year and has not felt any need to increase. So, is/was he addicted? I don't know that answer but I do know he was definately on too high of a dosage before and that his current low dose seems to help. As long as it continues to help then he will stay on it - we both are alert for any "need" to increase the dosage and if that happens, we will reconsider.

I can sign on for researching NCS findings. I do that anyway but I am not sure that I know all of the best sites to check. I mainly use the Medscape Advanced Search function but I can check other sites you think are worthwhile.

Sorry for submitting after the close but If someone else hasn't already I wanted to suggest looking into moisture wicking fabric. Summer is coming and many on the site have heat intolerance; I know it really helps my husband. It may of course be cost prohibitive but just a thought.

Thanks for the encouragement. I'll keep you posted as to what they find.

The article on the implant says it is an alternative to a UPPP and that the price tag is upwards of $2000. They expect insurers to begin reimbursing the procedure in one to two years after more studies are completed.

Thank you Luckychrm for letting me know that. He just had a bunch of blood drawn today and we are trying to move up his rheumatologist appointment.

Did anyone suggest either the Mouth Guard or the Sleep Apnea Implant? I will include the link to both articles on Medscape. The Mouth Guard was just endorsed and the article was in the February issue of Sleep. It is for "mild to moderate obstructive sleep apnea in people who don't respond to CPAP or have difficulty sticking with the treatment". There is also a newer procedure known as the Pillar Palatal Implant which was approved in Sept. 2004 and is about a 10 minute procedure done under local anesthesia in a doctor's office - it says that it was somewhat more effective in patients where the cause was limited to the palate. I personally do not have any more information on either of these alternatives but I am going to make sure we ask about them if he is diagnosed with apnea. http://www.medscape.com/viewarticle/522960 http://www.medscape.com/viewarticle/524519

Thanks for the information. He is having more testing on the thyroid - I'll keep my (and his) fingers crossed.

My husband is scheduled for a sleep study in May - his twin has been diagnosed with Apnea.

My husband gets that drunk-like walk and slurred speech when he is pre-syncope and if he doesn't lay down he can progress to passing out. I hate to admit that before he was diagnosed I actually accused him of drinking too much and not fessing up to it when in fact he hadn't had anything at all. When he is like that he needs to lay flat and drink, drink, drink to get hydrated. In about 20 minutes, he is usually ok. He now understands the importance of staying hydrated and I am no longer a water nag. He tries to get adequate rest, eat better than he used to, drinks lots of fluids, takes his medication and has strong conditioned legs that help keep the blood pumping. Nothing magical but it has worked for him. It is when he overexerts himself that things go wrong - that is the ongoing struggle for balance.

Hi and welcome from one spouse to another - my husband has NCS. We have been fortunate in that after making some life adjustments, he has been able to lead a full and productive life with occasional bumps in the road. Unfortunately we just hit another bump yesterday as his dr. suspects that he is in the beginning stage of Rheumatoid Arthritis. I will be watching for your news from Vandy. I appreciate your comment on learning patience as I am still struggling with that myself.

Yes, they think they caught it very early which is a good thing as it appears the medical community has changed their thinking on treatment. They used to wait until the RA had progressed before aggressively treating but now they start as soon as it is discovered. Now I am wondering about the auto-immune link with dysautonomia and if it is secondary to whatever else is going wrong in his body. He is down about the news so I need to get my act together and perk up.

My husband has been complaining of "bone pain" in both elbows, forearms and wrists so the Dr. ran some blood tests and did x-rays and the tests came back with an elevated Rheumatoid Factor (RF) level. Fortunately the x-rays were all normal but we now have a consultation with a Rheumatologist in a couple of weeks. He will also be getting more blood tests done this week. He also has elevated MCH and Monocytes. I am just starting to learn about Rheumatoid Arthritis (RA). I am hoping to hear from some of you that your RF factor was elevated but you do not actually have the disease or that it has not progressed for many years. I am so bummed - this disorder just seems to lie in wait until it decides to pile on a new symptom.

My husband takes Detrol LA (extended release) BUT that was prescribed by a urologist after an exam and review of all of his symptoms. Detrol is a "smooth muscle antispasmotic" and the Dr. felt that it might help buy him some time (15-20 minutes) before his body decided to "flush" everything from his system. His diagnosis is neurogenic bladder and his problem occurs when he is feeling pre-syncope. Basically his body will immediately flush out whatever it has (sweat, urine, etc) when he has an episode. It has been very effective and does give him time to "get somewhere" and avoid an accident. His main side effedt is dry mouth. He has been on it for about 8 months. I know there are different medications for the different types of bladder problems and other non-medication treatments available so you really need to see a urologist for the correct treatment for your situation.

What a great feat - especially so because you did it while battling POTS.

I would encourage you to see the urologist. My husband had both bowel and bladder incontinence as part of pre-syncope spells and the neurologist was able to prescribe a medication that has worked wonderfully. Prior to the appointment, they sent a detailed questionaire and even though his symptoms were not at all typical of those listed the Dr. was still able to help. He was diagnosed with Neurogenic Bladder and the medication has also helped with the bowel as well.

I have had those biopsies and yes OWIE is a kind word for it. It was over 10 years ago and when I read your post my body tensed up. It would be difficult for me to schedule for another knowing how painful it was for me. I remember the male doctor saying it would "pinch" and I also remember the remale nurse rubbing my arm saying "no, it will hurt". One of my friends has had 4 children and additional complicated pregnancies and she claims the biopsy hurt her more. So, you are not alone.

I had fibroids that caused severe bleeding resulting in anemia - I struggled with this for 9 years. In 1996 I had a myomectomy where they remove the fibroids and rebuild the uterine wall - this gave me relief for a few years. I was one of the minority (I can't recall the percentage) that grew new fibroids that caused even worse symptoms and in 2001, at the age of 42, I decided to have a hysterectomy. I had a "sub-total" in that only my uterus and not the ovaries (which were healthy) or the cervix were removed and I had a LAVH (laproscopic assisted vaginal hysterectomy) which was wonderful compared to the more invasive surgery 5 years prior. Downside is that I still have to have PAP's because I kept the cervix. The recovery on the LAVH was days vs. 6-8 weeks and many times it can be performed on an out patient basis, I stayed overnight only because the operating room was delayed and I didn't get out of recovery until midnight. Until about 6 months ago my hormones have been normal (for me). Just recently I have started to have hot flashes and difficulty concentrating which is most likely part of the regular progression towards menopause. For about 6 months, I have taken a plant estrogen supplement on the advise of my Dr. and it has helped tremendously to lessen both symptoms. During my fibroid years, I tried all kinds of alternative cures and the Drs tried every medical option but nothing helped - even double injections of the drug Lupron could not stop my periods. The hysterectomy was the best thing I ever did but then I don't have the complication of ANS issues. I can only imagine how much better you will feel if you are able to correct the anemia and of course the less invasive the surgery the better. As previously suggested, I know there have been advances in treating fibroids. This is another case where it is of benefit to do your own research before consulting with your Dr.

Even though I don't have OI issues I was severely anemic from the same problems and I felt AWFUL. Tired and totally exhausted, just crawling through the day until I could get back into bed. I can't imagine being so weak on top of the autonomic stuff. I too had to take iron pills and they did upset my system. I have a couple of suggestions if you have problems. First, take the iron pill with some bland food, second, take a stool softener (NOT a laxative) just an over the counter stool softener to make things easier (this was by far the most important) and third make sure you eat enough fiber and drink enough water to help keeps things moving along. Constipation was my worst side effect. I think I took Feosol, over the counter but should be used only under a doctor's supervision.

My husband was diagnosed with neurogenic bladder (causing urinary incontinence) and also had fecal incontinence. For him, this was the absolute worst of his symptoms and intolerable. The EP cardiologist sent us to one of his urologist buddies and he was great. He prescribed Detrol LA hoping that he could "buy some time" for when an episode started to when it became a real problem. The drug has worked wonders for him and has also helped control the fecal incontinence as well (the urologist was hoping for this result). For my husband, it is definately part of his NCS, his body basically decides to flush whatever it has when he has a pre-syncopal episode (sweat, urine...you get the picture). He still might get the urgency but he now has enough time to deal with things. It has been maybe 6 months now with no accidents. You can do a search on "incontinence" and you will see my previous postings. When you look up Detrol LA and read the fine details you will see that it is a "smooth muscle antispasmotic" - the only side effect he has from it is dry mouth but that just makes him drink more so it is OK. Following is the Medscape Drug link: According to the International Continence Society (ICS), overactive bladder disorder is characterized by involuntary detrusor contractions that may occur spontaneously or may be provoked (by rapid filling, alterations of posture, coughing, walking, jumping). An overactive bladder of neurogenic origin usually has been referred to as a hyperflexic disorder, whereas one that is nonneurogenic is referred to as an unstable disorder. The hyperflexic overactive bladder disorder usually involves a neurologic disorder. Tolterodine tartrate is used for the management of symptoms associated with both neurogenic and nonneurogenic overactive bladder http://www.medscape.com/druginfo/monograph...otype=monograph Excert from Neurogenic Bladder Author: Jong M Choe, MD, FACS?, Normal voiding essentially is a spinal reflex that is modulated by the central nervous system (brain and spinal cord), which coordinates the functions of the bladder and urethra. The bladder and urethra are innervated by 3 sets of peripheral nerves arising from the autonomic nervous system (ANS) and somatic nervous system. The central nervous system is composed of the brain, brain stem, and the spinal cord. http://www.emedicine.com/med/topic3176.htm