Misty’s Story

Site created on November 2, 2021

In 2015 while taking classes at WTA&M I started having eye problems and speech. I was diagnosed with Dystonia a movement disorder. But that was not the end in 2019 during EMT class I slowly became sick could not walk lost voice legs became stiff feeling I could not stand or sit up on own. I had just taken several Vaccines including flu so this worried me. Amarillo VA kept telling me it was all in my head I spent 2 weeks Christmas and New Years alone in hospital. I was not getting better. On Christmas day my doctor did a lumbar puncture and sent off spinal fluids. I went home before teat results came back. A week later my neurologist called and said he did have an answer I had elevated  GAD 65 levels associated with Stiff Person  Syndrome a rare 1 and a million disease. ( not as rare as they say) but still rare. So I had an answer I was sick I wasn’t  not crazy and need of mental health like they said. But for the next year half plus have found myself battling to receive effective care. In the area I live my disease is not known about or treated . When the neurologist here come up against something they do not understand or care to study they basically quit treating.   In a couple weeks I will make my way to AZ where there are more people who have SPS and movement disorders being studied and treated. I will write more of the past journey and new journey as it goes. 

Newest Update

November 2, 2021

Journal entry by Misty Tompkins —

This week a knowledgeable practitioner in my area saw the need for a medication that is used to treat spasms in SPS but had been withheld due to doctors not wanting to deal with addiction. With my disease there is no cure. We have pain, fear , holding on because some days when fighting to breath are scary. Weeks in hospital no places left to get good iv. The little bit of Ativan that helps me move function brings me quality of life. I have been on other meds one for 15 years much more addicting and damaging than Lorazepam. I have got some relief thanks to Angels at Cross Arrows. ? Why tell us the meds that help spams but refuse to prescribe and have pt like us end up in ER with out of control shaking and spasms and body locked up. I am attaching a chart of meds that are used to treatment SPS if your readings  this and your doctor is not helping your quality of life get a second opinion like I have. 
Read More of the journal titled "November 2, 2021"
Patients and caregivers love hearing from you; add a comment to show your support.
Help Misty Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Misty's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Misty

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

Comments Hide comments

Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Requests
Go to Ways to Help
SVG_Icons_Back_To_Top
Top