GardenGal

Good idea. IgE and IgG blood testing was literally life changing for me. Have had DRASTIC improvement. And I had to just pay cash, ordered by a MPH who though out of the box. Good luck!

Thanks Potsie. Feeling better now. Good ideas. I do a lot of what you mentioned, and will try to bulk up on my fruits and veg. Have a family history of hereditary fructose intolerance and feel pretty bad when I get too much fructose, but can usually balance it with some proteins in moderation. I did find a senna based tea and it was helpful. Yes, so thankful for Zofran and also use it sparingly. Thanks for your input an relating to my situation

Thanks guys. What I think was a GI bug has passed. It's sometimes hard to know because I am always SO blocked up that I don't get diarrhoea, just a lot of nausea, trouble keeping meds down etc. Am doing a bit better now. I take herbs and a LOT of vitamins C daily to keep things moving. Unfortunately Docusate, milk of mag, mag citrate, etc. have not been real helpful in the past for me... The Zofran helps a lot with the nausea and gastroporesis..... but makes the constipation worse. Oh dear. WinterSnow, hope your studies show something that's helpful with to problems you are having.

Ha! So funny! And I'm sorry that happened to you Pistol.

and delayed GI motility in general.... How to manage a GI bug? Any good ides?

My brain fog seams worse when I have a sinus infection... and I don't have classic symptoms (just air not going up as high as normal into my nasal passages, pressure, blurred vision). Also going off gluten has brought a huge improvement in my brain fog... but I will say, I'm so sorry. Though I've had improvement intermittently it remains one of the sad/frustrating aspects of this for me as well.

Ha! oh my Shannoncr that's funny, and awful all together! Thanks for sharing -)

Interesting.... I used to find swimming helped because I could actually move without getting dizzy, but now being at a pool (even without going in) is really really difficult. It's like kryptonite. I am not sure why. Is it the noise? Humidity? visual stimulation of the moving water? I don't know, but now and then I force myself to go (thinking it's in my head because I can't understand it)... and invariably I end up a mess.... Any body else? Ideas?

Yes, it helps a lot. For me, more helpful than stockings 🙂

So difficult. May you have wisdom and grace as you advocate for your daughter. I sent you a direct message.

Agreed on avoidance of the Epinepherine, but have also had trouble with prilocaine (other name citanest) even though it doesn't have Epi. See side effects. However, I now request Carbocaine (other names: polocaine, mepivacaine) and have done just fine with it. None of the awful winded cardiac dizzy thing I've experienced in the past. It is shorter acting, and I request it special ordered before appointments. So while I don't know if it would work for you, for me it's been such a relief to know I'll do just fine with it. Hope your biopsy goes OK. That can be nerve wracking.

Agreed with bombsh3ll. Urine should not be clear if dehydrated. It's dark to conserve. so sorry this was your experience. What about doing a 24 hour urine volume on yourself. 2 litters ish of pee is probably OK... 3 is pushing it. if you're getting 4+ liters, there's a problem. You're flushing nutrients and electrolytes.... Either you're drinking too much (sometimes as a result of the thirst centers in your brain being jacked, or your body is flushing fluids too much and you're drinking a lot to keep up/trying to compensate. This is an over-simplification :-)... but general idea. I'm sure you have already thinking on this or you wouldn't have written this post. Sorry to repeat what you already know....just wanting to reassure that you might b on to something. If you do decide to do a 24 hour volume check on yourself, you dump your fist pee of the AM, start counting with your second pee, then count the volume for your first pee the next day, ending your 24 hours. I wonder if it would be helpful to track fluid intake also (to make sure the volume is matching. I find that sometimes I'm conserving fluid much better then others, and like you -there are times when I just can't keep up. I guzzle electrolyte solution etc. My cardiologist put me on desmopressin and it has been SO so so so helpful! Though not perfect, and has some side effects, has really been a life changer in how stable I am. I've started to gain weight, have less muscle symptoms, my BP and heart rate are better.... So sorry you are going through this. Wish it wasn't this way for u

Gail, I will say that listing to your symptoms, I at least feel less crazy :-).... sounds quite familiar. I'm so sorry for what you are living with. I do not have Raynauds. Though my hands and feet get cold, not to that extent. You? On the eggs, I've had muscle testing and IgG/IgE testing that suggested I was reacting to them. I didn't believe it for years, and then finally went to just having them in baked goods, etc.... and then cut them out entirely. Through multiple elimination diets I finally was willing to admit that there was a striking correlation in my neuro-muscular symptoms and eggs. I still have the weakness and pain in my arms sometimes. Though like you, I've noticed that it's worse when I stop my magnesium. Overall however I've had marked improvement. I've had just a basic screen for Myesthenia Gravis, MS and a variety of other neurological disorders. I finally came to the conclusion that for now, I'm functioning in many ways, and perhaps my life would not be improved by knowing I have a progressive, degenerative neurological disease. How's that for avoidance?;-). Best of luck to you Gail! Steven, I have long wondered if ACTH is at least a component of what's going on... but for now, I've primarily stopped pursuing diagnostics and am working to maximise function. Hope you're able to find some things that are helpful to you!

This is cause for celebration indeed! Am glad for u!

Hi Emily. I'm so sorry your daughter is having this. I've had some run-ins with SVT over the years. Not fun. How's she doing?