diabeticgonewild

Yeah, I don't think I have anything to lose by asking my doctor. I will bring it up next appointment. Hopefully this will help me get back in to school. A powerchair would be difficult to use without relying on paratransit. You would have to get a handicap-accessible vehicle because you need to have a lowered frame and bottom on the car, so the powerchair can fit in to the cabin of the vehicle. In addition, you would need tie-downs, because if a car accident ever occurred, you would have a 200 lb projectile in the back seat of the car. Also some sort of lift or ramp would be needed. Accessibility is more of a problem with a powerchair, although I think it would be the best thing possible for me. I could also recline. I guess I will settle for a manual with a power assist. At least I could get around without accessibility challenges. I just don't know how to ask my doctor for a power assist. If you have any ideas, please tell me. Here is an example of a power assist on the back of a manual wheelchair. I guess tachycardia and fatigue would be a starting point for getting a prescription from my doctor for a power assist, such as the Smartdrive. If anyone has any suggestions to suggest to my neurologist, please mention them. I would imagine that obtaining it during a follow-up after getting a manual wheelchair would be most realistic.

Difficulty swallowing can be a sign of AAG, also. The rarity of AAG is makes that possibility discouraging, though.

Ok, I have never actually passed out from AAG or orthostatic hypotension, but for the past month, 90 percent of the time when I get up and I do not wear compression garments, I basically get the pre-syncope "blindness". I usually wear compression garments, but it is really hot in the South. I wear the Mediven brand hose, in their Plus series, 40-50 mmHg compression. I also wear the Design Veronique brand, non-zippered body girdle, Style # 1653. I also still sometimes get pre-syncope "blindness" even if I am wearing both garments. (I always wear both.) I have not progressed much from treatment. I still spend 20+ hours a day in a recliner and I stand up for 30 minutes a day at most. This has been going on since about February, although most of the past year has been this way. I really want to get back in school, and I think this would be a good idea, along with a powerassist for the chair. If you were me, would you consider a wheelchair at this point of time?

E Soskis, I am sorry to hear about this. In several publications (journal articles) it says that plasmapheresis or IVIG alone, is often ineffective, in terms of long-term benefit. Basically, what the "experts" on AAG say is that the benefits of plasmapheresis or IVIG alone are often "transient". Next time I go to my neurologist, I am going to pass by chemotherapy drugs, in addition to IVIG or plasmapheresis as a potential treatment, in hopes of increasing chances of remission. When I was diagnosed with AAG in January 2012, I had five treatments, every other day, over two weeks of plasmapheresis. That did not work and I ended up in the hospital again. A month later, I was started on IVIG and I stayed on that for about a year, until the end of February 2013. I then switched to plasmapheresis, with the first five treatments, every other day, over two weeks. Now, I receive plasmapheresis every 3 weeks for two treatments each time. I have that order and treatment until mid-September, when I hope for the plasmsapheresis to end and I also hope to get my dialysis catheter out (I have poor access). My neurologist said that after awhile, IVIG becomes ineffective and you have to switch to another treatment for six months, and then afterwards, you are fine from an IVIG standpoint. IVIG gives me terrible headaches. I have to basically lock myself in my COOL, DARK bedroom for two days. I also have to drink TONS of fluids to get rid of the headache. Also, the following week is minimally productive for me.

About a month before I was diagnosed with AAG, I had elevated prolactin.

This is completely outrageous. When I was diagnosed with POTS (which I do not have any more-it progressed to orthostatic hypotension and I have AAG), they said I had "conversion disorder". Later on, like about 6 months later, it turned out I had severe gastroparesis and orthostatic hypotension, that was "diabetes-related". Four and a half years later, it turns out I have a rare autoimmune disease that caused all of this. Psychosomatic diagnoses are more of an "I don't know" diagnosis for doctors.

Looneymom, I agree with alex74alex. I am an adult, but when I take around 6 grams of salt a day, I get muscle/joint pain, in addition to "muscle cramping". Salt causes fluid shifts in the bloodstream, and can cause various electrolyte imbalances. Diabetes doesn't help this matter either. Also, sometimes I drink up to 8 liters of fluid a day (!!!), which doesn't help at all. (I could probably benefit from a blood volume test, to say the least!) When I was on Florinef, I would get low back pain, around where my adrenal glands were. I also had my cortisol tested when I was on this medication, and I had a low cortisol value. My adernal stim test came back fine, but the low back pain did not go away until I discontinued the Florinef (gradually tapering down) for a few days. Discontinuing Florinef may not be an option for your child. Erythropoietin may be another option (although it is very expensive). Octreotride is another option too. Both are injectable drugs, and last awhile like weeks, at least, so this may not be the best option for your child, given the situation at hand. Saline IV infusions may be the best option, given the situation at hand. If IV access is poor, a port may be the best option. Care of the port is critical, and the port must be flushed at least once a month. You will always have to keep a close eye on whoever accesses the port-and be ready to tell a person accessing his port improperly to stop and use proper techniques- because sepsis or an infection is a risk. This will give you an idea about port access, although formal training is essential What I would discuss with his doctor: 1. Side effects from Florinef2. Muscle, Joint Pain, and Flank (low back) pain, and how salt and Florinef effect this. 3. Blood volume testing and possibly electrolyte values (an electrolyte test/metabolic panel may be useful, but this is not always an indicator of the problems your child is experiencing) 4. Future treatments, that will not likely compromise health if the future treatment is ineffective (for any reason), given your child's health situation. This could be brought up, especially if Florinef and Salt loading are potentially causing problems. I imagine that this would be pending on the results of a blood volume test and metabolic panel. Potentially bring up other medications (like the injectables I mentioned), saline infusions, or even a possible referral to somewhere else. I can imagine you addressing all of these points at an appointment. However, I do not think that all of these issues can be resolved with a single appointment. So, prompt follow up with the treating physician could be probable, after the appointment where you address issues.

Here is another "Sugar Free Gatorade" recipe: SF Gatorade Lemon Flavored 1 gallon of purified water. 1 Tsp of Morton's Lite Salt. 1 Pkg of SF Lemonade or limeade. 8 Pkg of SF sweetener or a liquid equivalent. 1/2 fresh lemon or lime cut into quarters or 4 Tbs of lemon juice or to taste.

You can basically make your own "Gatorade". Just add flavor (like Sugar-Free Koolaid to this recipe) 1 quart water 1 teaspoon table salt 1/4 teaspoon Mortons [all potassium] salt substitute You buy the potassium salt substitute in the grocery store where it is usually stocked in the baking section with salt.

Maybe an administrator from Mayo could be called.

I know I am not BarbaraC, but I had bad low back pain and even bone and joint pain. Has it been considered for him to be checked for adrenal insufficiency or electrolyte imbalances? I have tested for low cortisol concentrations before, but I didn't have adrenal insufficency when they did the cortisol stimulation test. I think it had to do with the amount of Florinef I was taking at the time (0.3 mg). 0.4 mg of Florinef can cause "adrenal suppression" according to a publication by Dr. Grubb. Also, I get bone and joint pain (even tooth pain, for that matter) when I ingest too much salt in general, due to fluid shifts and electrolyte changes. Florinef added to the mix certainly made it worse for me. I am just trying to give active input regarding the situation and to keep an active dialog.

There is a test (not commercially available) that links autoimmune ovarian failure with autoimmune dysautonomia. It is called the anti-peripherin antibody. Mayo is trying to get a patent on the test, as we post. http://www.google.com/patents/WO2011082416A2?cl=en

Alex, Since I am inviting everyone, I don't have limits to what you can and cannot do.You can do whatever you want with it, add in whatever you want - just please try to add in "notes" in the comment section (box) below every edit. I am currently working on the "diagnosis" section, which kind of is an area of controversy. I did kind of plagiarize in that section, and I need to reword it. I am also going to use HTML to make a table about the cutoffs for the antibody titers. After I make the table, I am going to link the descriptions of the subtypes of AAG directly from those subtypes listed in the "titer table". I am going to write/add in details in such a way that all of my "references" are cited within the Wikipedia article, which will really be a task.

I am making a Wikipedia page on AAG. If anyone wants to join in, the link is here: http://en.wikipedia.org/wiki/Wikipedia:Articles_for_creation/Autoimmune_Autonomic_Ganglionopathy http://en.wikipedia.org/wiki/Wikipedia_talk:Articles_for_creation/Autoimmune_Autonomic_Ganglionopathy I expect that the project will take 30-50 hours to complete, even if help from any of you is provided. If you could please give me input, it would be appreciated.

No, I do not receive treatment at one of the consortium hospitals. I receive treatment by a neurologist in Houston. I am going to bring up the topic of being seen at Mayo at my next appointment. Steroids or chemo is kind of risky because of my diabetes and the fact that I am more immunocompromised than the typical AAG patient. CIDP is a demyleiniating condition. AAG is not considered to be demyleniating. The antibodies do not damage the nerves, they bind to a receptor on the nerves of the autonomic ganglia. However, they have found post-ganglionic (like autonomic neuropathy - probably autoimmune) in a case that was diagnosed 16 years after the onset of symptoms. If I did not test positive for the antibodies, I would be in a really bad position. I already have type 1 diabetes, for 18 years, and that was what my "autonomic neuropathy" was "blamed on" before I was tested for the ganglionic nicotinic acetylcholine receptor antibody - and tested positive.

Diabeticgone wild, You mentioned a suggestion and used the phrase 'on a blog nonetheless' This girl does an excellent job on her blog. I don't read it regularly, but she does an excellent job of blogging about pots. I have a script to have a picc line put in to start saline IV's but haven't done it yet. Hope to get some improvement. Have read of MANY pots patients getting saline, and they report a very significant improvement. What confuses me though is that salt loading is not recommended for hyperpots patients. Am confused by this. Does anyone know why? I didn't mean to offend or use connotation that suggested any sort of negativity, but I did. She does work hard and I respect that. I apologize for the lack of consideration I gave when I wrote the above post. Thank you.

This sounds like a really bad idea in general, considering how addictive nicotine is. Plus, nicotine will give you yellow teeth! Acetylcholine has been implicated as a potential medication for the disease I have and although nicotine is an acetylcholine agonist, it has very little therapeutic potential, considering the short duration of action. Anyone who considers nicotine (who does not have a nicotine addiction) as a treatment needs to consider other therapeutic options. There is a new drug (at least for the US) for orthostatic hypotension coming out, which will likely eventually be used for POTS. The drug is called L-DOPS. It is supposed to be approved by the FDA by the end of summer. http://en.wikipedia.org/wiki/L-DOPS The drug is considered to be psychoactive and was even being considered (I don't know now if this is the case) for treatment of ADHD.

Somebody suggested, on a blog nonetheless, that a "Daxor blood volume test" could be useful in determining low retention of fluids in hypovolemic POTS. Only certain hospitals have this machine.

I am ordering mine from Design Veronique. http://showcase.designveronique.com/designveronique/index.php/shop/postsurgical/mid-body/non-zippered-abdominal-girdle.html The girdle is expensive, but if it helps my functioning, it is worth it.

I am applying for SSDI, a type of Social Security disability. I would imagine that seeing a physiatrist and having him or her write an evaluation could only help. As for a wheelchair, he or she could probably help me get a power assist for a manual chair.

I recently applied for disability and one of the books I read said to consider getting an evaluation done by a physiatrist because physiatrists are qualified specifically to evaluate your ability to work. The benefit would be if they wrote a report regarding functional capacity regarding limiting impairments. In addition to applying for disability, I am considering getting a manual wheelchair, particularly with power assist, for propelling and to maintain independence. Dizziness, pre-syncope and fatigue are significant, so the benefit would probably be worth it. Has anyone seen a physiatrist for dysautonomia or has considered seeing one? Next time I go to my neurologist, I am probably going to ask for a referral.

Neurofeedback is trying to control things based entirely off of your brain's signals. This is used for a variety of reasons. Sometimes, for people with ADHD, there are video games used for training people with ADHD to concentrate, using the brain's signals. Biofeedback/bioneurofeedback is similar to neurofeedback, except the input signals are your body's functions, such as heart rate and your brain's signals. You use the data to control things like heart rate. I have autoimmune dysautonomia, so biofeedback probably would not help me much. However, I may mention this to my doctor.

Well, sleeping pills are dangerous in general. If they are needed temporarily, for a defined period of time, you can probably get away with it. However, if sleep due to dysautonomia is really a problem, you might want to go to a counselor or psychologist that specializes in behavioral sleep medicine. http://www.absm.org/BSMSpecialists.aspx I went to one, and it truly works. I thought it was not going to work, and it was extremely helpful. It sure beats sleeping pills too!

I have severe gastroparesis. For hydration, you could get a snow cone machine like this, and use Pedialyte, Gatorade, or Powerade, instead of using syrups. The shaved ice can be soothing. Sucking on sour, tart, candies, such as lemon drops, can reduce nausea temporarily. For nausea, this is what I recommend: -When lying down, lie down on your right side, which helps your stomach empty faster. -Try sitting up as much as possible; this aids gastric emptying. -Reduce fluids at meals; this reduces nausea.

I would also like to point out that my doctors refer to my disease, AAG as: "Autoimmune autonomic ganglionopathy" "Autoimmune dysautonomia" "Immune-mediated dysautonomia" This may help individuals seeking treatment if there is autoimmunity present, because an individual can refer to those names, especially the last two, to their doctors.