issie

I have POTS, MCAS, EDS and a protozoa called FL1953 and a co-infection. So, there are some of us out here. I got all my DX's from doctors in AZ. Issie

Julie, are you still on plaquenil? Do you think it is still helping your RA? Did your high bp's get better and now they are trying to increase them. Why the midodrine? It wasn't a good one for me - but, I tend to have higher bp's. Mine are low with lying. I think that most of us will try almost anything at least once. We are all so different and just because one person can't take something, that doesn't mean that it might not be the perfect thing for us. And, you would always wonder. Worst thing, is it won't work and will be a horrible experience. Best thing is, you will then know what your response is and if it works ---Yayyyy. If it doesn't then there is no more question and it goes on the DO NOT USE list. (But, for the record ---it was the worst thing I've tried. It affected me in a very emotional way and that lasted awhile.) I did find that the herb Butcher's Broom is midodrine light. Very similar response - just not as intense. Issie

Hmmm! So Kriss - it hasn't really helped with all your issues then? They seem to be addressing autoimmune things with you. Maybe, addressing the mast cell things will be what will be the ticket. What type of special eye testing do they do for you? What are they looking for? Psalms - do you find that it has a significant help to your pain and do you think it has helped your Lupus to somewhat stay in remission or do you still have flares? Issie

Not sure if Mayo is the top place. But, it's probably the closest place to you. Many of us really like the Mayo in AZ and have gotten lots of our questions answered. At the very least you could have your autonomic function testing there. You would know more what you're dealing with. It's coming up on hot here in Phoenix and it is easier to get in when the weather is scorching. I think Dr. Goodman is pretty booked up - but, he is the one to see at Mayo. He will then send you to whomever else he feels you need to see for further testing. Sorry, you are having to join us - but, it's a good bunch of people and you will start to find lots of answers. You can do a search on past conversations and pull up lots of info on questions you may have in regards to things we've discussed. Issie

Chin up, Angela. You're making headway. Keep positive and keep going in a forward direction. (Don't let it overwhelm you. Take one day at a time, and one thing at a time.) Issie

I just looked up my IGG levels I'm at 654 and low on the subset 1 level. So, I guess that could be a big player for me. I was so hoping the LDN would have worked ---but, it didn't. Threw me into a major depression that took awhile to come out of. I've been offered plaquenil. Anyone using that and what's your experience with it?

Ha! Ha! Thanks you guys - could have gone very wrong - but, instead it went very right. That doesn't mean it will the next time though. But, for now I'll have a few months of cute and saved myself some money too. Win! Win! Issie

Okay, too bad ---that might would have been your answer. Have you had MRI of your head and neck and determined that there are no structural issues especially at the brain stem area? Some are finding Chiari and with the blows to the head - if you already had a cerebral tonsil drop - it could have caused it to be worse. There are some people that have noticed that they have POTS after an accident. So, it could be from a blow to the head and something causing issues there. Some of us have spinal instability and that can contribute to issues. There is a girl in Ireland that has a website and I wonder if there are some doctors she might could point you to there. I know Ireland is spread out - but, it's not as big as here. You can drive without too many issues to maybe get to a doctor that is more of a specialist. (I loved my visit to Ireland. Drove around the whole Southern area. We didn't go to the northern part. Our friends wouldn't let us girls drive up there by ourselves with the unrest that was happening at the time.) Her website is something like the Fainting Goat or something to do with Dysautonomia. She used to be here at DINET for awhile - but, I haven't seen her here in awhile. As for sleep and your blood pressure dropping. Mine drops with lying down too. I have to sleep semi reclined with lots of pillows under me. I can not sleep lying down. Have you tried that? I prop pillows under arms and under my knees too. My hubby calls it my cocoon. But, it's the only way I can sleep. Have you had your O2 checked and maybe had a sleep study to make sure you are getting enough oxygen at night and don't have apnea? Issie

Yes, would agree. I liked the second one even more. Nice things to reflect on. Something my husband always says ----The only thing we really have control over is not what is or has happened but how we respond to what is happening. It's that internal dialogue that is so important. It's the only thing we can control ---our responses. Will they be positive or negative? That choice is up to us! Issie

Maybe, you could give him a call and let him know what happened and he may know someone closer by that you could see. Issie

Find a new doctor is what you do and fight for him. The numb tongue could be an allergic reaction and/or mast cell problem. Was he eval. for EDS? Issie

All this hair talk - made me want to go cut mine. And I did ---myself. I know BRAVE - right? It turned out really cute. I have a chin length layerd bob --that I flipped out and cut bangs. I really like it and it looks thicker being a little shorter. What us women do sometimes. LOL! I could've been coming on here crying that I'd messed it up --but, I DIDN'T WHEW! Issie

Rachael, There are ways to address your autoimmune issues without IVIG. I have very low IGG levels and chose not to do it. I have changed my diet and also using herbals and some meds to address the immune issues. I can tell that things are getting better. This is a slow way to change the function of your body - but, it hopefully, will be a lasting change that will be good for a long time. One way to address the GAD65 problem is with diet. Hang In There! We all have periods of the way you feel. It's perfectly normal and something that one must go through with a chronic illness. Hopefully, we will find more answers soon. I hope your new doctor will continue the search for you and you will get more answers and a direction to go. Issie

I'm embracing my silver streaks. They are a pretty color and I tried the hair dye thing and it never turned out the color I wanted --my hair would always grab the red color in the dye and it didn't turn out the way it was supposed to. Since I have vitiligo - you lose pigment color in your hair too. So, when the spots where I lost hair in chunks due to alopecia - what came back in is a beautiful silver color. I asked the hair stylist about putting in more silver streaks - but, they said it would be hard to match the color and it is naturally coming in --so just wait a little while longer and it will happen on it's own. Everyone loves the way my hair is coloring itself. So, got to accept it and go with the flow. Issie

Hawthorne is usually used with high blood pressure to lower it. And if I'm not mistaken it dilates the blood vessels and doesn't constrict them. This may be the problem. Issie

The P450 clearance is one of the pathways your body detox's or eliminates something. From what you have written above - it appears that it may intensify the reaction in the body and make it more potent because you may not eliminate it as fast as normal. At least, that's how I'm understanding it. Issie

My first DX with pain was FMS and then AS and then at the same time EDS. So, I'd look into those things. I think that maybe you can have all three. But, a lot of what they thought was FMS was EDS related. With the spinal pain,with me, it's probably AS and EDS related due to arthritis that you get at a very early age. Osteo Arthritis is a big problem with EDS. Issie

Hope things work out well for you. Nice that you will be able to try the GastroCrom - should you decide too. Keep us posted. Issie

Hope you get more answers and the treatments that you desire, Jangle. Let us know how it goes. For sure have with you the testing results you already have and a list of what has been tried and your response to it. Any concerns that you want tested for. Let the testing take place first. They probably will re-do all of it. Then when you have your last follow-up visit - after testing, would be the time to bring up the meds. First, they want to know what your symptoms are and the discovery path you've been on. So, if you follow their order of things - then it will probably go very well for you. I use the Mayo in AZ too. So, not sure about the one in MN. But, the one here is amazing in how they do things. Hoping for a wonderful experience for you! Issie

Alpha Lipoic Acid is supposed to be one of the best things to help with neuropathies. I have read some really good reports about it. Issie

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Yes, that's what my rhummy looked at. It starts in the lower back - sacroiliac area. The doc said they will first notice the changes starting there. I hope this isn't his problem. But, if it is - then at least you will have a direction to look into ----autoimmune. They are not sure what triggers it for some - even if there is an inherited gene. Not all with the gene will have symptoms. Issie

I have terrible back and neck pain. Runs in my family. I also have EDS and lots of arthritis connected to that. Lots of degeneration of vertebrae and things not staying in place. I agree that swimming helps. I'm addressing the autoimmune issues at the moment. I use Turmeric and Astaxanthin and these things also help the pain and inflammation factor. I'm not supposed to use Advil because of my kidneys. But, that used to would help. I so know about pain ---so sorry he is having to deal with this too. Issie

SpinnyC, you are absolutely correct. That is what it all means. And yes, Kris it is very hard to get a MCAS DX. There is one other way they can determine it - Dr. Afrin in SC is doing it with an endoscope and tissue samples with a special stain. My doc takes everything into account and if nothing else has worked for some of us Hyper presenting patients he is giving us GastroCrom. Maybe, your doc would let you try it too. The other choice that some are using is ketotifen. But, that has to be gotten from Canada. If you contact ChristyD - her son is on that one. Hope you get some answers soon. I know how miserable it is. Glad you have the H2 on board too. Issie