Aa
How to find a helper
Hi & thanks for reading. I'm new here and have been greatly encouraged to read all the experiences and support found in this group.
I suspect that I've had dysautonomia all my life, but have only found doctors familiar with it enough to diagnose it in the last 10 years or so. I've been on beta blockers and SSRI's off & on over the years. My symptoms had been minimal as I've been practically bedridden for a number of years due to CFIDS. (hard to get dizzy when you're already laying down ;-)
Luckily, after treating systemic candida, my CFIDS symptoms were reduced enough that I was able to become active again. I recently started exercising again and found I was no longer having rebound fatigue. As exciting as this is for me, I'm forced to revisit the fact that when I exercise, I get lightheaded much more often. The lightheadedness is something I've always just lived with. (chugging fluids, taking salt, and getting up slowly & sitting when my body needs)
Things changed for me about a week ago when I completely passed out my first/only time. Coming to, slipping in my blood, confused and scared, is something I hope to never repeat. I'm very lucky; landing my head in a free fall to the wood floor could've gone much worse. But it has prompted me to decide that NOW would be the time to see someone who specializes in this area.
I'm hoping you can help. My current "plan" is to go for testing at Cleveland Clinic to pinpoint exactly what parts aren't working right. After that, I'm wondering if I just got to my PCP for continuation of care or do I need to find a specialist closer to home or can care be done long distance? What have you found that works for you? I'm in mid-Michigan and Toledo would be close enough for me to go, so I was considering getting on the Dr.'s waiting list there. (currently about a year wait for him or a few months for his nurse) Also if any one has recommendations for folks in Michigan, I'm all ears.
Also, I'm wondering if any are familiar with working with CFIDS. I have yet to find someone to comprehensively address my CFIDS. I'm looking for a doctor familiar with testing for and treating pathogens. As candida has turned out to be such a significant component for me, I can't help but wonder about mycoplasm and others as well. It would be fabulous to find a doctor who could take care of everything, but I'm willing to see as many doctors as needed to piece together care. I have found that sleep quality/quantity significantly affect my dysautonomia symptoms, so it is difficult to not link them.
My thyroid levels have been testing normal since adding iodine supplements. (previously had goiter w/nodes. since adding iodine, nodes disappeared and goiter shrinking)
Not sure what other info might be helpful & this is already a bit lengthy, so I'll say THANK YOU & look forward to your input.
Danielle
I suspect that I've had dysautonomia all my life, but have only found doctors familiar with it enough to diagnose it in the last 10 years or so. I've been on beta blockers and SSRI's off & on over the years. My symptoms had been minimal as I've been practically bedridden for a number of years due to CFIDS. (hard to get dizzy when you're already laying down ;-)
Luckily, after treating systemic candida, my CFIDS symptoms were reduced enough that I was able to become active again. I recently started exercising again and found I was no longer having rebound fatigue. As exciting as this is for me, I'm forced to revisit the fact that when I exercise, I get lightheaded much more often. The lightheadedness is something I've always just lived with. (chugging fluids, taking salt, and getting up slowly & sitting when my body needs)
Things changed for me about a week ago when I completely passed out my first/only time. Coming to, slipping in my blood, confused and scared, is something I hope to never repeat. I'm very lucky; landing my head in a free fall to the wood floor could've gone much worse. But it has prompted me to decide that NOW would be the time to see someone who specializes in this area.
I'm hoping you can help. My current "plan" is to go for testing at Cleveland Clinic to pinpoint exactly what parts aren't working right. After that, I'm wondering if I just got to my PCP for continuation of care or do I need to find a specialist closer to home or can care be done long distance? What have you found that works for you? I'm in mid-Michigan and Toledo would be close enough for me to go, so I was considering getting on the Dr.'s waiting list there. (currently about a year wait for him or a few months for his nurse) Also if any one has recommendations for folks in Michigan, I'm all ears.
Also, I'm wondering if any are familiar with working with CFIDS. I have yet to find someone to comprehensively address my CFIDS. I'm looking for a doctor familiar with testing for and treating pathogens. As candida has turned out to be such a significant component for me, I can't help but wonder about mycoplasm and others as well. It would be fabulous to find a doctor who could take care of everything, but I'm willing to see as many doctors as needed to piece together care. I have found that sleep quality/quantity significantly affect my dysautonomia symptoms, so it is difficult to not link them.
My thyroid levels have been testing normal since adding iodine supplements. (previously had goiter w/nodes. since adding iodine, nodes disappeared and goiter shrinking)
Not sure what other info might be helpful & this is already a bit lengthy, so I'll say THANK YOU & look forward to your input.
Danielle
I'm thrilled that you're finding what you need here. :-) We really are a great bunch, and it's an amazing support system. Just let us know what information you are looking for and hopefully we can dig it up for you. It does make a huge difference being able to connect with others who have "been there." I know ... it's what motivated me to volunteer here myself. :-)
Feel free to post as often as you'd like. We've had a few quiet spells lately and it was a little eerie to me. LOL
Best,
Heiferly.
Feel free to post as often as you'd like. We've had a few quiet spells lately and it was a little eerie to me. LOL
Best,
Heiferly.
OM gosh!!! I just found the electrolyte recipes from 2009!! Thank you, Thank You, THANK YOU!!!! Nice to see I'm not the only adult out there chugging pedialyte and especially nice to have some new ideas to try. So resourceful, you guys are great; wish I'd found you all sooner!
Oh, wow, thank you doesn't even begin to sum up what I'm feeling right now. Granted, I've been up since about 3AM so I'm not my most stable, but I could almost cry, I'm so encouraged by your reply! I'd looked at CC's website for CFS info & couldn't find it, so thank you for the link!
And my sleep studies have shown mild apnea, about equally distributed between obstructive and central, with slightly more central.
I'm an eternally optimistic type, so I really think there might be answers out there for me & it sounds like Cleveland Clinic will be a good place for me to find them! Thank you so much for your reply & for moderating this group!!
And my sleep studies have shown mild apnea, about equally distributed between obstructive and central, with slightly more central.
I'm an eternally optimistic type, so I really think there might be answers out there for me & it sounds like Cleveland Clinic will be a good place for me to find them! Thank you so much for your reply & for moderating this group!!
Danielle,
Welcome! Great to meet you.
Starting at Cleveland Clinic sounds like a great plan. (I'm a patient there myself. By the way, hello, neighbor. I won't hold the fact that you're from Michigan against you, despite being a Buckeye, LOL.) I would say to hold off for now on deciding what you're going to need in terms of continued care. You may very well be able to manage things with your local docs using Cleveland Clinic on a consultation basis; they will be willing to communicate with your local specialists by phone as needed, and see you for follow-up if things get hairy. They're good about not calling you in for follow-up unnecessarily if you're not local, though, and instructions can just be given to your local docs to be carried out where you live. They've even recommended tests to be carried out for me locally; even if it was things that weren't available at my local hospital, lab work can often be drawn locally and shipped to whatever hospitals are able to process it. I've had stuff recommended by Cleveland Clinic, drawn at Ohio State, and resulted at Mayo Clinic, for example.
On the other hand, there is no harm in getting on Dr. Grubb's waitlist as a precautionary measure in case you find you do need him. You can always call and ask to be removed from the list in a few months if you find you don't. I was on his list before, but never ended up needing to go there. So if that seems prudent to you, go for it. :-)
If I recall correctly, I know someone with POTS who had a doc they really liked in MI for autonomic. I don't know if it's a cardio or neuro. I will try to get a hold of him and see if I can get the doc's contact info and if I'm even remembering correctly that this was in MI. I can't promise anything because this isn't someone I'm in regular contact with, nor am I quite certain I'm remembering this correctly. But I'll give it a shot and let you know what I find out (if anything). My life gets chaotic regularly (that would be an oxymoron if you didn't have dysautonomia/chronic illness yourself and understand what I mean, right?), so if you don't hear back from me on that within about a week, send me a message and remind me about it. (Hover over my username, Heiferly, in blue at the top of this message or anything else I post and click on "send message" in the dropdown menu that appears to send a private message to me.)
While the heart hospital (cardiology department) at Cleveland Clinic is ranked #1 in the US (US News and World Report ranks US Hospitals by specialty), and that's where their syncope and autonomic clinic is housed, the Department of Rheumatic and Immunologic Diseases is ranked #2 in the US. That's the specialty you would see for CFIDS.
http://my.clevelandclinic.org/disorders/chronic_fatigue_syndrome/rheumatology_overview.aspx
So I would say there's no reason not to have things comprehensively evaluated at CC. That's one of the biggest benefits of Mayo and Cleveland Clinic for autonomic testing: if you have other health concerns, they have so many highly-ranked medical specialties that it's very likely they're the right choice for all your needs. You can't beat one-stop-shopping, and that's why these institutions have such good reputations as world-class diagnostic hospitals. The ability of the different disciplines to inform and enlighten each other all under "one roof" (okay, not physically ... they're big campuses ... but metaphorically speaking), can mean the difference between pinning down the right diagnoses and treatment or not.
In order to get everything tackled for all your needs and coordinated properly while you're there, make sure whichever of your docs makes the referral has all the info they need from your other doctors (i.e., maybe your CFIDS specialist can fax a letter of referral for CC to your dysautonomia doc, then that doc sends that along with his/her referral so everything is all together). Just make sure Cleveland knows from your doc that you have multiple needs that they'd like to have addressed while you're over here in OH; CC may also add things "on the fly" as test results come back, so they sometimes will tell patients to be flexible in their travel plans in case they need you to stay longer to see another specialist or add more testing.
You mentioned sleep as well; have you had a sleep study? That could probably be done locally at your hospital in MI if you've never had one before and think that might shed light on anything. Sleep disorders are not at all uncommon in people with dysautonomia.
If you haven't looked at our Health Pages, you can click on the link to that in the upper right corner of the page when you are in the Dysautonomia Community and poke around there a bit to see if there's anything of interest to you there. We share our health pages with other Neuro communities, so just look for things that seem relevant to you. :-) And pardon our dust; the pages go "live" as we work on them, so many are works in progress.
Let us/me know any other questions you have. Oh, and I'll be happy to answer anything specific to "the Cleveland Clinic experience" as well. There's a thread floating around here somewhere that I posted right after my testing. And one from another member too. I think they're here on the front page of the community right now, reposted in the response to another community member who is getting ready to go to Vanderbilt for testing if you've seen that thread. The links to the CC posts are toward the bottom of that thread.
Best,
Heiferly.
Welcome! Great to meet you.
Starting at Cleveland Clinic sounds like a great plan. (I'm a patient there myself. By the way, hello, neighbor. I won't hold the fact that you're from Michigan against you, despite being a Buckeye, LOL.) I would say to hold off for now on deciding what you're going to need in terms of continued care. You may very well be able to manage things with your local docs using Cleveland Clinic on a consultation basis; they will be willing to communicate with your local specialists by phone as needed, and see you for follow-up if things get hairy. They're good about not calling you in for follow-up unnecessarily if you're not local, though, and instructions can just be given to your local docs to be carried out where you live. They've even recommended tests to be carried out for me locally; even if it was things that weren't available at my local hospital, lab work can often be drawn locally and shipped to whatever hospitals are able to process it. I've had stuff recommended by Cleveland Clinic, drawn at Ohio State, and resulted at Mayo Clinic, for example.
On the other hand, there is no harm in getting on Dr. Grubb's waitlist as a precautionary measure in case you find you do need him. You can always call and ask to be removed from the list in a few months if you find you don't. I was on his list before, but never ended up needing to go there. So if that seems prudent to you, go for it. :-)
If I recall correctly, I know someone with POTS who had a doc they really liked in MI for autonomic. I don't know if it's a cardio or neuro. I will try to get a hold of him and see if I can get the doc's contact info and if I'm even remembering correctly that this was in MI. I can't promise anything because this isn't someone I'm in regular contact with, nor am I quite certain I'm remembering this correctly. But I'll give it a shot and let you know what I find out (if anything). My life gets chaotic regularly (that would be an oxymoron if you didn't have dysautonomia/chronic illness yourself and understand what I mean, right?), so if you don't hear back from me on that within about a week, send me a message and remind me about it. (Hover over my username, Heiferly, in blue at the top of this message or anything else I post and click on "send message" in the dropdown menu that appears to send a private message to me.)
While the heart hospital (cardiology department) at Cleveland Clinic is ranked #1 in the US (US News and World Report ranks US Hospitals by specialty), and that's where their syncope and autonomic clinic is housed, the Department of Rheumatic and Immunologic Diseases is ranked #2 in the US. That's the specialty you would see for CFIDS.
http://my.clevelandclinic.org/disorders/chronic_fatigue_syndrome/rheumatology_overview.aspx
So I would say there's no reason not to have things comprehensively evaluated at CC. That's one of the biggest benefits of Mayo and Cleveland Clinic for autonomic testing: if you have other health concerns, they have so many highly-ranked medical specialties that it's very likely they're the right choice for all your needs. You can't beat one-stop-shopping, and that's why these institutions have such good reputations as world-class diagnostic hospitals. The ability of the different disciplines to inform and enlighten each other all under "one roof" (okay, not physically ... they're big campuses ... but metaphorically speaking), can mean the difference between pinning down the right diagnoses and treatment or not.
In order to get everything tackled for all your needs and coordinated properly while you're there, make sure whichever of your docs makes the referral has all the info they need from your other doctors (i.e., maybe your CFIDS specialist can fax a letter of referral for CC to your dysautonomia doc, then that doc sends that along with his/her referral so everything is all together). Just make sure Cleveland knows from your doc that you have multiple needs that they'd like to have addressed while you're over here in OH; CC may also add things "on the fly" as test results come back, so they sometimes will tell patients to be flexible in their travel plans in case they need you to stay longer to see another specialist or add more testing.
You mentioned sleep as well; have you had a sleep study? That could probably be done locally at your hospital in MI if you've never had one before and think that might shed light on anything. Sleep disorders are not at all uncommon in people with dysautonomia.
If you haven't looked at our Health Pages, you can click on the link to that in the upper right corner of the page when you are in the Dysautonomia Community and poke around there a bit to see if there's anything of interest to you there. We share our health pages with other Neuro communities, so just look for things that seem relevant to you. :-) And pardon our dust; the pages go "live" as we work on them, so many are works in progress.
Let us/me know any other questions you have. Oh, and I'll be happy to answer anything specific to "the Cleveland Clinic experience" as well. There's a thread floating around here somewhere that I posted right after my testing. And one from another member too. I think they're here on the front page of the community right now, reposted in the response to another community member who is getting ready to go to Vanderbilt for testing if you've seen that thread. The links to the CC posts are toward the bottom of that thread.
Best,
Heiferly.
There is a clinic at the university of Miami run by a Dr. Nancy Klimas you can google her, my brother in law went too see her and thinks the world of her clinic, but I understand now you don't directly see her?? I am not sure but I heard this clinic is wonderful. I wonder if the burning in my back is part of fibromyaligia well I am not sure but I have not gone too see her as that is not my biggest problem right now its the pots so i want to help that b/f I tackle another problem take care
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