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I posted a couple times here in the forum, and I wanted to drop back in with an update. I know you’ve been researching EDS and it’s accompanying disorders/syndromes for years, and a lot of suffering people come to this forum for answers, so I figure any and all information related to the subject would be useful here.
My primary’s first question upon hearing some of my symptoms was if I’ve ever been tested for lupus. They drew some blood, I haven’t heard back about the results yet, but.. Then my rheumatologist sat with me (and 5 students!) for over an hour taking down my history and symptoms. He and his students seem to be pretty convinced that I have lupus presenting with Raynaud’s phenomenon, although he agreed I am hypermobile. He believes my hypermobility is aggravating or amplifying the effects of lupus on my joints and my pain level, if that makes sense.
When I left his office Monday, I was waiting on my blood work to be faxed to his office so we could find out if I tested positive for either lupus or rheumatoid arthritis. I was told to weigh the pros and cons of starting treatment on Plaquenil, regardless of my test results. I’m leaning toward starting anything that might offer me some relief!
So I do have more questions now that I did before. Lupus, being an autoimmune, and from what I’ve just read, related to MCAS problems, disease.. shouldn’t that just be one more indication of EDS? The symptoms between lupus and EDS are so very similar, especially after your findings on EDS’s relationship with POTS/MCAS/dysautonomia, that I can’t help but wonder if they go hand in hand?
I could be way off, I’m definitely not a professional (as much as I have always wanted to be!) and I’ve only done some very light research into lupus and Raynaud’s since Monday. I’m sure the two diseases/syndromes probably affect different genes, but I’ve also read that Raynaud’s can be caused by collagen disorders?
I’m so confused at this point.
I’m wondering if I should bring in more info on EDS to my next rheumatologist appointment in 6 weeks, and include some literature from your research, since he only briefly wikipedia’d the subject while I sat in the office with him. I have a list of other symptoms that weren’t exactly covered in the appointment, too.
Since you all seem to be so up to date on all the info on EDS and Dr. Diana has been personally funding and running clinical trials on it, I figured this would be the best place (and most reachable!) to ask these questions. I understand everyone probably has a very busy schedule and limited supplies of spoons, so any and all information or advice given me right now would be so incredibly appreciated!
Again, and always, thank you SO much for all the work you do, and everyone hang in there!
Cheers.
This is SUCH an interesting question! Yes, many of our signs and symptoms can appear as lupus. Some of us develop autoimmune conditions down the road, and lupus is one I’ve seen (I also see rheumatoid arthritis, dermatomyositis, multiple sclerosis and others). I’m glad that your doctors are looking into it and should you have markers that indicate lupus, they can address these. These autoimmune conditions can cause or exacerbate POTS, and it’s important to know if you fall into this boat. HOWEVER, our condition can also mimic many autoimmune conditions — and this is where it gets tricky. Treatment for problems that mimic autoimmune conditions, but are not truly autoimmune, are different. I’ve seen some doctors even resort to treating us as autoimmune (because it’s the only thing that seems to fit, despite negative lab work). If given a diagnosis of a “presumed autoimmune condition”, I hope you and your doctors always keep their minds open to the possibility that it MAY be something else — they just haven’t figured out what that something else is yet. Please keep us posted — so many of us are in your position. Thank you for posting such a great question! 😉
The lab results are in, and “everything is fine, except you’re vitamin D deficient.”
Why am I not surprised? Haha. Eek. So now I do have this question: if I have Raynaud’s phenomenon, and hypermobility joint syndrome, and all the symptoms of autoimmune conditions like lupus, but no evidence of lupus or rheumatoid in my blood work, this makes me a zebra, right?
Actually my question is whether being treated with an anti-malarial like Plaquenil, even without evidence of an autoimmune disorder in my blood work, will do anything to help me, or does it have the potential to worsen my symptoms? He still wants to start me on that medication. Ever since trying the soft cervical collar (which was scary and I thought I was going to die! but my occipital headaches have since gone away almost completely!) I’m a little wary of just jumping into any sort of treatment. Especially treatment by a doctor with no background in treating Ehler’s-Danlos or any other collagen disorders. (Okay so I really mean especially by a doctor whose only knowledge OF Ehlers-Danlos came from a 5 minute scanning of the wikipedia page on it – which I’ve read and isn’t exactly up to date.)
I’m sure a lot of these questions get asked in here, and I’m sure the information is on here if I dig around a little and look for it. I wanted to post an update and I do have a lot more research to do in the month before my next appointment with this doctor. I was just hoping to get some leads and pointed in the right direction as far as what treatments I should be talking to my doctor about and what my options are as far as anti-malarials and autoimmune medications.
I know that physical therapy to strengthen the muscles supporting my joints is a big part of treatment, but I do have to go get an MRI for my sciatic nerve pain (and toe numbness) before I let any physical therapist start fiddling with my body.
And I know the best thing for me to do would be to find a doctor in my area that’s at least familiar with Ehler’s-Danlos or even just collagen disorders, but believe me that was my first priority and the nearest one is over 600 miles away, so that option isn’t really an option for me unfortunately. I plan on printing out the research papers I’ve read and highlighting parts, along with possibly writing a paper on myself and my symptoms and why I believe I have Ehlers-Danlos, and then presenting my rheumatologist with all this information and scientific evidence and trying to (gently) let him know that this is something he might want to learn about.
If he continues to keep a closed-minded “I know it’s not that,” attitude, then I will have to fire him and find myself a different doctor with a better attitude.
Again, any help, tips, pointers in the right direction, or answers about what autoimmune medications would potentially do (help or hinder) would be greatly appreciated!
Keep on keeping on, everyone.
Hi SaraC,
I have been tested for lupus so many times over the years that I could have qualified for a patient role on House M.D. (For those who never watched the show, they had a running joke that “it’s never lupus”.)
And, no, I don’t have lupus either. The rheumatologist who screened me for lupus the first time back in 1990 was the one who diagnosed me with Ehlers Danlos Syndrome, hypermobility type (8 out of 9 on the Beighton scale).
I understand your squeamishness about seeing a physical therapist. I finally took the plunge this past month after almost 40 years of symptoms, and I am so glad I did! I traveled over 1,200 miles to see Jerry Hesch in Aurora, Co. He is outstanding and well-versed in both hypomobility and hypermobility issues. Do a Google search on him and see if he may be of benefit to you (he has lots of educational youtube videos to watch even if you don’t go to see him).
I have absolutely less than no interest in ever seeing a “big box store” medical specialist ever again for my EDS, narcolepsy-like sleep disorder, or platelet disorder. What a waste of time and money it has been for me. Instead, I do my own research of the medical literature and correspond with researchers and people like Jerry who have a life-long passion for learning and helping people with chronic, complex health problems.
Living with EDS has been both an arduous journey and a curious adventure, and I am glad for the opportunity to have met and shared ideas with so many interesting people over the years. I can only hope for such an intriguing adventure for you in your quest for answers and relief from all the suffering.
MTD
I’m sort of with MTD here, in both being tested for lupus, and for trying to avoid the “big box stores”. You would think that a diagnosis of EDS would open doors, right? Just the opposite in my case. Everything was blamed on EDS and I was punted from the doctors’ offices, told to seek an “EDS specialist”. I think I could have said I had pink and purple butterflies on my skin, and they would have blamed it on “EDS”! That was very frustrating and I often wished I could erase that diagnosis from my record so doctors would continue to think! Now, your question about plaquenil is an interesting one. I do know of a physician with EDS who does better on plaquenil — there can be advantages beyond treating autoimmune disorders. Having said that, you know of course, that it is not without potential adverse reactions and side effects (like the eyes!), and no one should take its use lightly. I don’t seem to have “typical EDS”, in that I have no joint pain. When I developed connective tissue pain, however, I did try it for a while, but saw no difference. There are many forms of inflammation (and sources of our various types of pain), and sometimes it is a bit of a guess. Only you and your doctor know where you are on the “willing to take a risk scale” (although your fear of a cervical collar may hint where you are on this scale). 😉 Please let us know how it goes!
I’ve been weighing the pros and cons of trying the Plaquenil. I got the prescription and the order for my eye exam in the mail the other day, and I just haven’t decided yet. I need to read more about it.
My last eye exam (a couple months back) had him telling me that my tear film evaporates faster than normal, my sclera doesn’t look especially thin, and that we need to keep tabs on my optic nerve because he sees some early signs of glaucoma (runs in the family, too). I already have astigmatism, and I already get diploplia – which I had no idea was a thing until I started talking to EDSers. I’ve also seen floaters since my teens, what I described as “being able to watch atoms dancing in the air around me”.
I’m now fairly convinced that the soft cervical collar didn’t cause my terrible reaction, but that I have an allergy to ranitidine. My CSF nose leak is coming back, and I know the headaches are soon to follow. I’m going to try the collar again tonight, and I stopped taking the zantac after I tried another one about a week after my “episode”, and had similar, but less severe, symptoms.
I also have a slight reaction to calcium supplements (like Tums), so now I just take an Immodium every day with my other lovely daily doses.
Aside from the plaquenil concerns, my main issue has been my sciatic nerve, on my left side. On and off for 4 years (since a car accident), and as of right now constant for the last 4 months. My MRI is in a couple weeks. Fingers crossed for me, please! My back s’port brace has been a huge help in my daily activities, but I’m fighting not to use it too much and potentially cause more damage/weaken the surrounding muscles and cause myself more pain.
I’m leaning toward giving the plaquenil a shot, just to see. What’s to lose, really? If I try it for a couple months and get no more relief than ibuprofen gives me (which is squat, basically), then I stop taking it. And if it helps, it helps, y’know?
I’m really wishing right now that I’d followed through with medical school. I’d be at the point of picking my area of study right now, and I would love to be part of the research into Ehler’s-Danlos and similar conditions. I wanted to be a cognitive neuroscientist, but life..gets in the way, sometimes. Ah well, one bite at a time!
I’ll keep updating as things progress. Keep on keeping on, everyone!
Research would be luck to have you, Sarah (for this exhausting work with no income – lol). 🙂 You likely know that I’m a big believer in PATIENTS being some of the best minds to figure all of this out because of their special insight. Meanwhile — forgive me if this question is a repeat, but you may be describing a CSF leak, which may be secondary to high intracranial pressure. Was anyone able to help you figure that out? Let us know how the plaquenil goes! Sciatic nerve pain can be a beast. 🙁
I believe it is a CSF leak, like you describe. When I watched your YouTube videos that was a HUGE symptom that stood out to me. I’ve been carrying tissues around with me everywhere for a couple years. At first I thought, “Oh, it’s allergies,” and I’d take a zyrtec and write it off. Then I’d think “Oh, it’s just cold out,” and blame it on the weather (I live in MI, weather is highly unpredictable here lol). Nothing I did made the clear liquid stop running, though. I read a news article about a man in the UK who’d had a runny nose for years, and doctors found a tiny hole in his nasal passage that was leaking CSF, and I freaked out a little about that haahaha.
But it’s not a coincidence that my runny nose is often accompanied by a full feeling in my head and will progress to an occipital headache after a couple weeks. My doctor hasn’t even looked into it, I’m sure. Before I saw him, I thought he was going to look into EDS and the diagnostic criteria for it, and boy was I wrong. It’s still another two weeks before I see him again. I’m staying hopeful that now he’s seen I don’t have lupus or rheumatoid arthritis, he’ll take me more seriously.
I have this issue with doctors (and many others) where I look like I’m 17, but I’m actually 31, so they see this young, healthy looking girl and think, “There’s no possible way she knows what she’s talking about, she’s a child.” It’s frustrating. I’m glad I have a couple weeks between now and my appointment so I can get my evidence together into a neat little folder and go in and hit him with some hard science. 🙂
Sarah, I would love to hear that you were able to get relief with the use of Diamox, as my kids and I were. If high intracranial pressure is contributing to your leak (and many symptoms) I wonder if a trial may be worthwhile?
Definitely would be worthwhile for me! Two years ago, I knew nothing about what was wrong with me, and I was so focused on work that I didn’t have any time to look into any of it, so I just described it as “neck pain”. Now I know how far off that description is.
I’ve been much better in the month or so since I wore the soft collar for just a couple hours, but the leak has been coming back little by little. Today it’s back to the point of needing tissues at all times. So frustrating when you’re trying to draw and you have to stop every couple minutes to grab a tissue!
So.. I’ve started using the soft cervical collar most nights when I sleep. My CSF leak has waned again, which is awesome!
Had my MRI done, and now I have a dx of cervical and lumbar osteoarthritis, with degenerating discs putting pressure on my nerves and spinal cord, to go along with my dx of Joint Hypermobility Syndrome. I begged the office for a referral to a physical therapist, because I’m thinking that being taught how to position my body “correctly” at all times and how to exercise correctly are going to be crucial aspects in sustaining a good quality of life. Being only 30 years old, and reading that osteoarthritis is considered “early-onset” when it affects someone under the age of 50, is daunting in and of itself.
Aside from the cervical collar, I use a sacroiliac cushion on my desk chair, and wear a sacroiliac belt to work. I haven’t had the follow-up with my rheumatologist yet, so I can’t say for certain, but I’m speculating that my hip joint is more affected by osteoarthritis than my lumbar spine, based solely on the fact that wearing just the sacroiliac belt relieves my sciatic nerve pain just as well as wearing the Saunder’s all-back support brace.
I haven’t located an opthamologist to have my eyes tested as a prerequisite for starting the plaquenil treatment yet. I’m still debating; working midnights and having a flare of bursitis in my left shoulder have taken their toll on my research time. I am, however, incredibly tired of taking anti-inflammatory meds and feeling little to no improvement.
I will be sure to ask about Diamox at my appointment on the 28th, and let you know how that pans out for me.
I’m trying to have patience with my rheumy, and keeping in mind that he has studied and retained information about thousands of different patients and medical conditions, while I’ve really only studied my own body and its symptoms for the past 25 years. In that light, though, Dr. Diana, I have to agree with you on the “patients are the best minds to figure this out” front. Especially when it’s a condition that can cause such a wide variety of symptoms from patient to patient; I think it’s important for every person who is affected by this condition to speak up and seek out a diagnosis and have their individual case recorded – if not for researchers to use immediately, then for future generations to study and learn from.
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