Hi peeps, I was hoping maybe someone with a similar situation could help me out. Since last may (07), I've been having more issues going on. It started with tension headaches and more symptoms started appearing. On april 3rd of 2008, my family doctor diagnosed me as having ehlers danlos syndrome. She's also a geneticist who specializes in rare genetic disorders such as EDS, Marfan's, etc...Anyway, I was wondering if maybe my symptoms could be related to something else besides EDS. My WBC count was slight elevated (10.9) and my celiac AGA level was elevated. My blood pressure was 108, and the next time it was 98 (my doctor said low blood pressure can also be due to EDS). Then just yesterday it went up to 142.Hopefully somebody on here can help me. Here's my list. Beware, it's long:
*Headaches(tension/migraines). Pressure on top of my head.
*Painful period (was so bad one time I couldn't have a BM. It was like a knife stabbing me through my rectum into my lower abdomen)
*Frequent need to urinate
*Burning when I urinate/UTI feeling (had urine sample done, showed nothing)
*Mucus in stool (sometimes mucus will come out by itself/without stool. Will usually feel a gurgling in my rectum when this happens). Had a stool sample done, showed nothing.
*Lower pressure in abdomen
*Brain fog/memory isn't as great
*Rotten egg burps/vomiting episodes (have gotten these since I was in elementary school)
*Dizzy spells (Have gotten these since 4th grade)
*Hard stools (sometimes tend to tear my anus, causing it to bleed)
*Ataxia (balance issues, intermittent)
*Chronic acid reflux/gurgling in throat
*Fatigue/sometimes have more energy
*Muscle aches/body aches (felt like the flu onetime)
*Waves of nausea
*Skin sometimes hurts (felt like the flu onetime)
*Dry patches of skin (especially on face. You can see where the patches are when I put my makeup on/Gets darker with makeup on it).
*Itchy skin (intermittent)
*Dry eyes (intermittent)
*Dry mouth (not horrible, intermittent)
*Vaginal dryness (sometimes hurts to cross my legs or walk because it's dry, intermittent)
*Vaginal area stings after I wash myself with body wash in the shower/stings when I urinate after showering. (Has been like this forever).
*General ill feeling
*Overly elastic skin (EDS)
*Overly flexible joints (EDS)
*Clothes are looser, But the scale says I haven't lost any weight. I actually gained 2 pounds.
*Eye floaters, eye pain (intermittent). Saw eye specialist on 6/1/07 and said eyes were a little inflamed, probably due to allergies. Saw regular eye doctor on 2/12/08 and said eyes were perfectly fine.
*Sleep problems (insomnia, tired too much, it varies)
*Tingling/numbness in fingers, toes, sometimes the right side of my head and neck
*Prickling/pinching feeling on my skin sometimes
*Sharp spasms in stomach and arms after I eat (intermittent)
*Fluttering/heartbeat/high pitched ringing in ears (intermittent)
*Bruise more easily
There's probably more but I can't remember them all. I've seen a gastroenterologist and he thinks I should have an endoscopy and a colonoscopy done, But I have very bad ocd and am afraid of catching something from unsterilized tools. He knows that, so he's not pressuring me into having it done. I've also had a CT scan and an MRI scan done of my head. They had found a 2 ml thing in my head/a fatty tissue. By the time I had an MRI done, it was completely gone. My family doctor/geneticist thinks I should have an x-ray done of my cervical/lumbar/thoracic spine because she also suspects I have degenerative disc disease, and a gastric emptying scan to check for gastroparesis. My gastroenterologist doesn't think my GI symptoms aren't related to EDS, but my family doctor does. Part of me still thinks I could have an autoimmune disease. I've had some symptoms all my life (vomiting/dizzy spells, vaginal dryness/pain, etc...) What do you all think? If you were me, what would you check for? I've already had my thyroid levels checked and they were all fine.
Sorry this was so long. Thanks for any help you can give me!
Fellow EDS person here (classic) and autoimmune disease sufferer (Hashimoto's thyroiditis). Not a physician. The following are the first things I would pursue in your situation.
Many people with EDS report gastrointestinal problems, particularly Gastroesophageal Reflux Disease (GERD) and Irritable Bowel Syndrome (IBS). (Stretchy skin, stretchy joints, stretchy GI system!) Your doctor would probably want upper and lower endoscopies before diagnosing you with either of these. You mentioned having acid reflux, so even without an upper endoscopy you should talk to your doctor about something like a proton pump inhibitor or other medication to reduce reflux.
It might be worth getting your allergies tested, particularly food allergies. Many people with food allergies experience GI troubles instead of the standard hives/itchiness reaction.
You mentioned an elevated celiac test. I looked up the diagnostic protocols for celiac disease and it seems that the AGA is an older, less accurate test. The modern test is to detect a specific IgA antibody, along with a total IgA test to make sure that one is not IgA-deficient. For these tests to be accurate, you would need to be eating gluten. If you have these tests done and they come back negative, it still might be worth trying a gluten free diet to see if it helps your symptoms.
You might find it useful to try a food diary and see if you can find any correlations with your symptoms.
The mouth, eye, skin, and vaginal dryness stand out to me because they are symptoms of an autoimmune disease called Sjogren's Syndrome. Like all autoimmune diseases, it can be hard to diagnose because much of the blood tests are rather nonspecific. At the very least, your doctor should check your Erythrocyte Sedimentation Rate (ESR), C-reactive protein, and Anti-Nuclear Antibodies (ANA). These are more general markers of inflammation. Sjogren's Syndrome is associated with Rheumatoid Arthritis, so up to 90% of SS patients will have positive Rheumatoid Factor. There are other antibodies to be checked, but you can look them up on Wikipedia just as easily as I can!
The skin and vaginal dryness could also be a reaction to your soap. If you haven't already, you might want to switch to one that is hypoallergenic and does not contain dyes or fragrances. A dermatologist might be able to recommend something if you continue to have trouble.
It sounds like you have a lot to discuss with your doctor. Book an extra-long appointment and bring this list of symptoms with you. I hope you find solutions to your problems.
I am a swiss GP and I have EDS patients in my practice. Your list of symptoms is absolutely typical of EDS. There is hardly no need for further investigations. Treatment should be supervised by your doctor. There is a french specialist named Claude Hamonet in Paris who has published the list of symptoms on his website.
I hope this will help you.
I'm type 1/3 EDS'er here. I have most of the same symptoms as well as being a Celiac. One of the things that I have been able to figure out on my own is that it is not just wheat gluten that I have issues with. I highly suggest a food challenge diet to test for allergies. After doing this, I was able to isolate about five other food substances I was reacting to. The allergic responses, like sulphur belches are from sulphur/sulfite allergies and foods that are high in them. The challenge diet will help you isolate if sulphur is an allergy for you as well, but it certainly was the cause of those symptoms for me.
Also with the EDS I do urinate a lot and have issues with maintaining a proper electrolyte balance. I have done better taking a prenatal vitamin daily and making sure to use electrolyte water on a regular basis. Another thing, the skin issues are likely atopic dermatitis (eczema) that may be from the food allergies or contact allergies in your environment. Multiple chemical sensitivity is common in EDS so skin rashes can happen. Another common issue is Von Willebrand's disorder that is a clotting issue making for heavy and painful periods. Also Fibromyalgia and Chronic Fatigue Syndrome is a common compounding issue for EDS'ers. Until you do the food challenge test or have your doctor do an ELISA/ACT allergen/intolerance test (or both), your immune system will be too geared up from allergies to be able to determine if you have a legitimate auto-immune issue or are just allergic to things.
It is thought my mother and I have the vascular type ehlers danlos but it is extremely difficult to find a geneticist and specialist. Who is your doctor that diagnosed you and where are they? I am in NJ and will fly wherever to just get my mother diagnosed and some help.
Dr. Suleman is well versed in diagnosing EDS. We live in texas and had gone to many different doctors until we found him.. people from all over the United states come to him. He has offices in Dallas texas and McKinney texas. He also has a geneticist he will be sending us to in the area after we finish our tests.
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