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.
*Abdominal cramps
*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
*Hot flashes
*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)
*Chills
*Depression
*Anxiety
*Chronic acid reflux/gurgling in throat
*Fatigue/sometimes have more energy
*Muscle aches/body aches (felt like the flu onetime)
*Joint pain
*Muscle weakness
*Bloated (intermittent)
*Waves of nausea
*Shakiness
*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)
*Excessive gas
*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!