Ctat333

It seems to work well in the AM. The lightheaded and dizziness go away, but my energy is still low. Once it starts wearing off in the early afternoon however, the symptoms come back. I wish I could take another one haha, but doc's orders are only one a day for right now. Maybe I could call tomorrow and ask if it would be ok to take another dose in the afternoons? Only side effects I have noticed are slight goosebumps when the med kicks in, but other than that, nothing.

Hey all Had my follow up with Dr. Suleman yesterday. I have been trying to manage my POTS and EDS without meds and thru lifestyle changes only, and it just wasn't working. I have been feeling horrible, and just really had a hard time these pst few weeks. After telling Doc all of this, he decided to start me on 2.5 mg of Midodrine once a day. I go back to see him in 3 weeks to check in with him on the meds. I'm a little nervous! I've never taken anything "serious" like Midodrine before. If I take pills, it's usually a supplement or Ibprofen, so this is new to me lol! I was also prescribed a prescription dose of Vitamin D (50,000 IU) that they are having me take weekly. My Vitamin D level was at 17....I'm told that's kind of low haha. Any super important things about Midodrine I should know? I've been searching the forum, and it seems like it works really well for some, and not so much for others. I'm hoping it works for me! These POTS symptoms are just too much. Gentle hugs to all! ~ Alison ~

And yes, my testing was done over a 2 day period, with a sleep study in between. You will be exhausted when it's over, so be prepared for that. Make sure you have salty snacks and water with you, and something to do. Make sure you bring any chargers for your phone or tablet. If you are going to his Medical City location, there are plenty of options in the hospital for food. At his McKinney location, there is a 5-10 minute drive to a shopping area with a mulitiude of resturaurants to choose from. You will have a couple of hours between tests for you to eat.

He diagnosed me in March. He's a fantastic doctor! He also reffered me to my geneticist, Dr. Wilson, who diagnosed my EDS a month later. Dr. Suleman is VERY thorough. I don't think I could have gotten a better workup at Mayo or Vanderbuilt. Be prepared to wait a lot. He spends a LOT of time with each patient though, so even though you have to wait, when it's your turn, he spends just as much time with you. If you search "Dr. Suleman" you will find my post about my visit and all the tests he ran. I'm very happy with him Hope your appt goes well, and you get some answers!

When I find out more, I definitely will. I don't know if this is POTS related, EDS related (I have that too lol), or if this is something totally separate. From my reading, I've gathered that this these antibodies are produced in response to some auto immune diseases (Gullain Barr Syndrome, CIDP, Multifocal Motor Neuropathy, etc.) What keeps throwing me off though, is that some studies I've read have said that some patients with connective tissue diseases can produce these antobodies, but it seems like the authors are referring to autoimmune connective tissue diseases, like lupus, sjordens, RA, etc. I don't think Ehlers Danlos would be included in that group, as it's an inheritable condition, and not auto immune related. This is where I'm stuck. I know I have neuropathy, and it seems like my positive ganglioside test confirms this (still waiting on NCV test results too). But it's what is causing the neuropathy. I don't think my doctor will explain the test results over the phone, and I don't think I can wait 2 more weeks until my next appt to find out lol! When I found out the test results, it was because one of the nurses was calling me about my Vitamin D levels, which were extremely low. I asked about the rest of my blood work, because. I didn't have the results yet, and she read the rest of the report to me. I'm not sure if she was really supposed to do that... Grrr, I hate waiting!!

Is anyone here familiar with the ganglioside panel test? That was one of many blood tests that my doctor ordered for me. I got a call last night from my doctor's office because of some abnormal results (go figure haha...) One of the abnormalities was my ganglioside test. All I was told was that it came back "abnormal" and that was level was 55, and that this confirms neuropathy. I have been researching this for hours, but I'm still having a hard time understanding what this means. Can anyone here explain what this panel tests for, and what an abnormal result means? Is this releated to my POTS and EDS, or is this a new can of worms? I don't meet with my doctor again until June 12, and I will for sure get more clarification then, but for now, I would at least like to understand the test a bit more! Thank you in advance, and sorry if my question is confusing lol. Gentle Hugs, ~ Alison ~

How many pills do you take on a daily basis? I am on supplements only, no medication, and take at least 12 and up to 16 per day. And I still have more supplements to add to my regime! I meet with my nutritionist at the end of April to implement the rest of my nutritional plan. I have always hated taking pills, so this is a huge change for me that I am not particularly find of :/

I was officially diagnosed with EDS by geneticist Dr. Gordor Wilson in Dallas, TX yesterday. He also diagnosed my Mom, 2 diagnoses for the price of one haha. He is going to bat with our insurance companies to try and get them to pay for totol genome testing. He has not given us a "type" of EDS yet, since my family seems to be more complicated lol. It blows me away to think that just a few months ago I was trying desperately just to survive long enough to let my insurance kick in so Incould go to a doctor and hopefully figure out what was wrong with me. Now, within just a few short weeks, I have my diagnoses. I can finally put a name on all this madness. I'm not thrilled to be chronically ill, but I'm so happy to have a starting point, at least.

IceLizard, it's been incredibly interesting. I know nothing about genetics, so I have been taking a crash course in Genetics 101 haha. In case anyone is interested, below is the link to the NCBI article regarding COL3A1 haploinsufficiency mutations in Vascular Ehlers Danlos. http://www.ncbi.nlm.nih.gov/pubmed/21637106 ~ Alison ~

Ok, I totally thought I lost my first post, took the time to write a second one, and now I see my original post lol. Sorry for the double post everyone :/. Brain is fried!

Sorry for such a long time since a reply. I have been busy researching via the Inspire forum. I plan on updating more thoroughly later on, but for right now here is a short summary: My family is thought to have the rare haploinsufficiency mutation of vEDS. It is still vascular Ehlers Danlos, but it is associated with a longer life expectancy and a later onset of complications, which are usually only vascular. In my family many people have a very thin, translucent skin. You can easily see our veins running over our chest, abdomen, legs, back, breasts. We look like roadmaps ha ha! Many of us also bruise extensively. After doing some family research, we found we have a history of aneurysms. For the majority of my journey towards diagnosis, I focused on POTS and Hypermobility Ehlers Danlos. This vEDS has really thrown us for a loop!! I completely expected and accepted that I had hypermobility Ehlers Danlos, and that was the cause of my POTS. Apparently not lol. I meet with geneticist Dr. Wilson in Dallas tommorow. My Mom will be coming with me to my appointment, And we are both hoping to get more information and clarification. If we can convince my insurance company pay for it, he's also going to order a genetic test. I will post more later, and Will definitely update everybody on my appointment tomorrow. Back to my research haha ~ Alison ~

Thank you ChristyD!!!! I've been expecting and accepting an EDS Type III diagnosis. I was given information last night that has made me a little unsure of that now. Trying to find as much information as I can! Thank you again! ~ Alison ~

Does anyone on here know if POTS can be associated with vascular EDS, or if it is only the hypermobility type? Also would this board be a good place for Ehler Danlos questions, or is there another forum for that? Thank you! ~ Alison ~

Thank you Ana. I wholeheartedly agree that I would never wish this for anyone, or myself! I'm jut happy to finally know why I've been so ill. I have been searching for a diagnosis for 6 years now, with symptoms going on 12 years. I finally have a little peace of mind. Hopefully now Incan begin my journey on the path to healing Wishing you many good days! ~ Alison ~

Forgot to add that I was given referrals to a nutritionist, radiologist (for pelvic congestion?? No clue what this is, will have to do some research), and an exercise physiologist.