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No, I don’t think I would have survived if I’d tried to do it all in one day! lol. My husband couldn’t go, so a friend went with me, we flew very early on Monday, my appointment was Monday, then were back home last night (Tuesday). As it was, it was quite a whirlwind, and my husband was really worried about how I would “hold up.” I’m getting the TLC I need now that I’m home, and hanging in there! Thank-you to the people who have responded to my post, I appreciate the support!
Yes,I am back and recovering from the trip, trying to return to my “normal unhealthy self!” Totally in pain and wiped out, but so glad I had the opportunity to go, it really was worth the travel trauma. Dr. Diana and her husband are totally FABULOUS and so are the office staff. They have incredible technology and knowledge and are some of the nicest people you will ever meet!
Dr. at Mayo didn’t say much, just that we can follow up with the movement study, then the rheumatologist and then she wants me to see a different neurologist, one who apparently knows about EDS. But I couldn’t get an appointment with him until Nov.
Hi, I’m brand new here, and very frustrated. I have read some of the information on PrettyIll.com when I am able, and it makes so much sense. I am hoping for some guidance. I am a 57 year old female. I have had interstitial cystitis since 2002, I take Elmiron for it. I have had issues my whole life and I suspect I have Ehler-Danlos hypermobility type. So far I have been diagnosed with: (interstitial cystitis), T.I.A. 1/24/13, essential tremor 4/29/13, hypothyroid 5/14/13, neurogenic bladder 7/16/13, mitral valve prolapse 11/22/11 (I also take Ranexa for angina because I have “small arteries”), fibromyalgia 1/21/12, degenerative joints in hips 7/12/13, tipped uterus 7/11/13, 5 mm kidney cyst 6/10/13, urethral polyps 7/16/13, endometriosis (diagnosed in 2004, but I have gone through menopause), scoliosis since age 10, diagnosed by school nurse-45 degree curve in thorcic spine, osteoarthristis, degenerative discs and joints in cervical, thoracic and lumbar spine, bulging disc in lumbar, anterolisthesis, spondyliosthesis, spondylosis, sciatica, radiculitis, foraminal stenosis, subcortical cyst, chronic pars defects (lumbar), reversal of lordotic curve, chronic wedging C5, end plate irregularity, reactive marrow change. I was in the hospital last weekend after my current dr. increased the levothyroxin I have been taking since May from 25 mcg to 50 mcg-I took the first 50 mcg dose at 4 am, and when I got up at about 9:20 am, I was having extreme jerking and tremoring all over, I went to hospital emergency, they admitted me and kept me overnight. I couldn’t sleep much because of the movements but they stopped next morning. They diagnosed me with tonic-clonic activity, gerd and atypical chest pain. They released me since I told them I will follow up with my doctor. I don’t look sick and doctors usually tell me I’m “anxious.” The nurse’s aid did a blood pressure test where she had me lay down, sit then stand, but she said my blood pressure was about the same each time. Since Jan. 2013, I have been to a urologist, cardiologist, rheumatologist, neuropsychologist, endocrinologist, several neurologists, gynocologist, psychologist, physical therapist, physiatrist, and have just changed to a new primary care doctor at the Mayo Clinic. When I had my first appointment, she was a little overwhelmed with all the information I provided, and had me go for the test where they connect electrodes and put tiny needles in the muscles. The follow up neurologist at Mayo Clinic said it just shows I have sciatica. They did mri with and without contrast of my brain, cervical spine and thoracic, and he said it all looks okay, but he will look at it more later “when he has time.” He said he is a Parkinson’s specialist and I don’t have Parkinson’s Disease. Which is a relief, but I still don’t know what is going on. I have an appointment with the new primary care doctor (D.O.) at Mayo Clinic tomorrow to follow up because of the hospital stay. My sister has Mast cell disease and my mom and sister and I are all “double jointed.” My brother is hypothyroid with diabetes type2 and heart problems. I am the only blonde haired blue eyed female in the family. I can do at least 5 out of 9 on the Beighton scale. When I was a child, the other kids called me “camel” because I would hyperextend my knees and my hips were “loose” when I walked. My uncle took a super 8 movie of me walking and showed it on “family night” to “shame” me into changing the way I walk, because my family thought I was doing it on purpose. I taught myself to walk with my knees slightly bent and hips still by using a mirror. I have big lumps on my forearms and smaller ones elsewhere, had a big one (golf ball size) removed from my upper thigh when I was in my 30’s. When it was removed, the dr. couldn’t understand why the local pain killer didn’t seem to work and I could feel him cutting ( I also seem to feel everything at the dentist). I get terrible back of the head headaches, and have these “spells” where I get really HOT, break out in a cold sweat, dizzy, back and chest pain, trouble breathing, start passing out. I get pain in my knees, then they go weak causing me to fall ( I walk with a cane since March). I have so many symptoms I can’t list them all. My urologist thinks I have MS. I am scheduled for a “movement study” at Mayo in Sept. with a follow up with an MS specialist neurologist, then another appt. with a rheumatologist who supposedly knows about EDS, but that appt. isn’t until the end of next month. Am I on the right track? What can I say to the doctor at Mayo Clinic tomorrow to get tested for the right things?
The headaches and eye pain alone are kind of scary.