My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Monday, March 28, 2011

My trip to St. Louis to see Dr. W

Wow, I've got a lot to write about.  First of all, I did get to see Dr. W in St. Louis about my EDS.  Yay!  She is an amazing doctor.  She doesn't follow through with adults, but she does with children.  If anyone is in the St. Louis, MO area, or willing to travel to the area as I did, and wants to know how to get in touch with Dr. W send me an email by using the Contact Me tab.

At the clinic I saw both Dr. W and a genetic counselor, which I didn't get to see last time I saw a geneticist.  I had about an hour of face time with them.  She was very helpful and from my symptoms diagnosed me with POTS, as well as giving me the official diagnosis of Ehlers-Danlos Syndrome Hypermobility Type.  I told her that I was in physical therapy and they only okayed me for one month.  She wanted me to have four more months after that month, for a total of five months straight in PT.  I gave my therapist the script from Dr. W but she said she didn't think Medicare would okay it.  She said Medicaid doesn't even pay for physical therapy in this state.  I'm so very lucky to be able to have PT at all.  I've been doing really good with my PT homework so that I can make the most of this time.  My goal is by this summer to be able to walk in the park, even if it is with my walker.  Yes, I got a snazzy new red walker, but more about that later.  Medicare did okay me to have one extra month of PT, for a total of two months, though.  I am really excited about being able to get an extra month.  I also am getting Oval 8 splints for my fingers.  I will have to pay for these out of pocket.  I am also supposed to get wrist braces that will keep my knuckles from dislocating, which will be very nice.

I got the letter from Dr. W in the mail today detailing her notes from the appointment.  I hope I signed for her to send it to my rheumy who is still in denial about me having EDS.  If not I'll have them send it.

I've been having problems lately with running out of meds and then going into a flare for a day or two.  Dr. A, my neuro, wants to see me before he refills my Lamictal, a seizure med, again.  I don't know if I'll have to do another EEG again or not.  I think I should probably take this opportunity to ask Dr. A about scanning for Chiari.  The thing is, I don't see Dr. A as a very competent medical professional.  For instance, after he diagnosed me with a possible TIA (mini-stroke) he sent me on my merry way with advice to take a baby aspirin every day.  I've been taking aspirin everyday and I've been taking fish oil, which lowers cholesterol.  My cholesterol levels were borderline last they were checked, but as healthy as I've been eating lately they are probably much lower, especially combined with fish oil.

Okay, as for the promised news about my walker, I got one called the Rollator.  It has four wheels, brakes, and a seat so I can sit down when I can't walk anymore.  I love, love, love my new walker!  I'm going to end this post with warm fuzzies of my sweet new walker.  ;-)

Seat up

Seat down...let's relax!

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