...I just got my official discharge date!! I am so excited!! After almost six weeks in the hospital, I can't wait to go home! Thanks to everyone who has been praying and crossing their fingers, because I am getting out ONE day before my birthday!!! I am so excited!! I don't even need a party, it will be the best birthday ever! I am also really excited to be out for the Christmas season.
It's funny, because I should be more nervous about going home than I am. I am still not safe to take steps on my own, so I am going home in a wheelchair, which has plenty of logistical and safety challenges that should make me uneasy, but I am so excited to get out of the hospital that all I feel is excitement!! Just the chance to go outside, to get a full night's sleep, to escape needles and blood pressure cuffs....I can't even imagine the luxury!!
So my official discharge date is this Thursday. Starting next week I will begin home health, which will send in physical therapists to help me orient to the house and my new equipment. I am hoping all this equipment will be very temporary and that I'll be running up and down the stairs before long. We'll see. I have been using a walker in therapy, and once I get a little more stable and my knees get a little more predictable, I should be able to make my way around the house (and the world!) a little more easily. As cool as a walker is, it makes me look no less than 90 years old, so soon as possible, we will be working towards crutches. I did get to try them out a couple times here in therapy... Have you ever tried walking with crutches when both your legs are impaired?? Haha. It's a pretty complicated process. Remembering a safe stepping pattern is enough of a challenge, let alone remembering other important things like balancing and watching for obstacles! But it shouldn't be long before I'm there.
Once the home health physical therapists sign off on my safety at home, I will begin outpatient physical therapy several times a week. We will continue working on all the things I've been doing here in rehab, with the goal of getting me back to my normal self. As for the medical side of things, I have an appointment with an MS neurologist and an appointment with a Barrow's neurosurgeon (thanks Vanie!) later on this month. So rehab is the first focus, and solving my medical mysteries is up and coming!
Reflecting back on the past six weeks (and the seven weeks of being sick before that!) it is hard to really process everything. So much has happened; so many challenges, so many blessings. Thanks to all of you for the many expressions of love and friendship. So many people have made great sacrifices to help both me and my family. I have been truly stunned and encouraged by the unexpected outpouring of love. I am realizing that no matter how hard life is, it is the people who make it worth living. I don't think I've made enough time in my life for people in the past year. Maybe that's what I needed....a wake up call to truly see all the people in my life for the amazing blessing they are. Thanks to everyone for supporting me, praying for me, and cheering me on. It has meant so much! I have honestly felt your prayers. There have been many difficult days and moments where I felt peace and hope instead of fear or despair. It is amazing what a prayer can do...I know now, more than ever, how real God is, and how much he loves us individually as his children.
I will try to share updates over the next few weeks, as I can.
Love,
Mandy
Tuesday, December 6, 2011
Monday, December 5, 2011
Diagnosis?
Many people have asked about my diagnosis, so I thought I would try to explain a bit. Sadly (mostly sad for me!) there isn't an easy answer to that question. After two weeks of intensive testing and puzzling out confusing clues, I had about five doctors, including two neurologists sign off on a diagnosis of MS. Since then, things have gotten a little more hazy, as we have had some differing opinions from additional doctors. It has all been a little complicated and frustrating, to say the least. When it comes to further investigating the diagnosis, we won't know anything for at least 6-8 weeks, probably longer. Waiting and repeating the MRI is the only way to get additional clues about the lesion without doing a biopsy. Given the risk of doing a biopsy in my motor cortex, waiting is the safer (though certainly not less stressful) option. So the diagnosis is on hold for a bit. Many people have been asking specific questions about tests we have and have not done, things we have ruled out, my condition, why we think MS, etc. For those of you who are asking, I will try to list out some of the things I know, and answer some of the questions that I have been asked frequently. For those of you who have thoughts or questions, feel free to email me (mandyclive@gmail.com)
Things I know:
1. The most important thing right now is my physical rehab, and getting back to passable function, and then on to normal function.
2. The lesion in my head is located in my motor cortex. It is almost 3 cm, which is much larger than most MS lesions.
3. MS, by definition, should have more than one lesion in either brain or spine. Not all lesions are detectable by MRI in the early stages, and this is one thing we will be watching for in follow up MRI's, to see if there are new lesions forming
4. I have several other "areas of enhancement" on my MRI, which could be signs of venous inflammation, and could be emerging lesions. Future MRIs will tell.
5. The MS panel of my cerebrospinal fuid (spinal tap) is positive. MS isn't the only thing that can cause this test result, but we have ruled out most of the other things that can.
6. My symptoms are responding to steroids and physical therapy, which is expected for a demyelinating disease like MS, or something related.
7. There have been several symptoms (heart, lungs, kidneys) that don't have explanations.
8. We have ruled out most infectious causes. We had an infectious disease doc who ran tests for every virus, bacteria, and parasite the labs and send-out labs could test. All came back negative except Rocky Mountain Spotted Fever (RMSF) and Typhus.
9. For whatever strange reason, we think the RMSF and Typhus are triggering false positive. We treated them, just to be safe. There is still some lingering curiosity over this one.
10. We have done several nerve studies, some which are completely normal, one which was abnormal (evoked potentials test).
11. My ongoing symptoms include extreme fatigue (unlike anything I've experienced before. Something as simple as showering can sap all of my energy and leave me feeling unable to even lift my arms to brush my hair), head fogginess and pressure, loss of balance, vertigo, muscle pain, extreme joint pain, trouble standing/walking (obviously), loss of coordination in my left hand (this is improving).
12. Yes, we ruled out Guillain Barre. We did several tests to be sure.
13. My lesion has been described as "Tumefactive." If you Google "Tumefactive Lesion" or "Tumefactive MS" you will find several stories that are similar to mine. It is rare, but there is precedent for such confusion over diagnosing a lesion and symptoms.
14. Every doc has a different opinion about my diagnosis or non-diagnosis. The neurologist here completely disagrees with the Mayo doc. The Mayo doc disagrees with the neurologists back at Desert. I honestly don't think we have found the doc I want to work with long term.
15. Without more information, the puzzle pieces of my case are not going to fit together. Hopefully follow up MRI's will tell us what we need to know.
Next Steps: We are hoping I will break out of the hospital later this week. (My birthday is Friday, and I am dropping some very not-subtle hints to the docs and therapists here!!) When they release me from here, the next step will be physical and occupational therapy at home for a couple weeks. As soon as the therapists are comfortable that I am safe with daily tasks at home, and able to transfer to a facility, I will begin outpatient therapy. Sadly for my family, I will be completely dependent on them to get me to and from therapy. (This has all been a tremendous lesson in accepting help. My family has been amazing in helping me and supporting me in every way; I really couldn't feel more loved.) I have an appointment with another MS specialist (Dr. Grainger) on December 15th (he is supposedly better than the Mayo doc, so we'll see. We are kind of shopping around for someone we really like). No matter who I am working with, we will repeat that MRI in about six weeks to see how things have changed.
Things I know:
1. The most important thing right now is my physical rehab, and getting back to passable function, and then on to normal function.
2. The lesion in my head is located in my motor cortex. It is almost 3 cm, which is much larger than most MS lesions.
3. MS, by definition, should have more than one lesion in either brain or spine. Not all lesions are detectable by MRI in the early stages, and this is one thing we will be watching for in follow up MRI's, to see if there are new lesions forming
4. I have several other "areas of enhancement" on my MRI, which could be signs of venous inflammation, and could be emerging lesions. Future MRIs will tell.
5. The MS panel of my cerebrospinal fuid (spinal tap) is positive. MS isn't the only thing that can cause this test result, but we have ruled out most of the other things that can.
6. My symptoms are responding to steroids and physical therapy, which is expected for a demyelinating disease like MS, or something related.
7. There have been several symptoms (heart, lungs, kidneys) that don't have explanations.
8. We have ruled out most infectious causes. We had an infectious disease doc who ran tests for every virus, bacteria, and parasite the labs and send-out labs could test. All came back negative except Rocky Mountain Spotted Fever (RMSF) and Typhus.
9. For whatever strange reason, we think the RMSF and Typhus are triggering false positive. We treated them, just to be safe. There is still some lingering curiosity over this one.
10. We have done several nerve studies, some which are completely normal, one which was abnormal (evoked potentials test).
11. My ongoing symptoms include extreme fatigue (unlike anything I've experienced before. Something as simple as showering can sap all of my energy and leave me feeling unable to even lift my arms to brush my hair), head fogginess and pressure, loss of balance, vertigo, muscle pain, extreme joint pain, trouble standing/walking (obviously), loss of coordination in my left hand (this is improving).
12. Yes, we ruled out Guillain Barre. We did several tests to be sure.
13. My lesion has been described as "Tumefactive." If you Google "Tumefactive Lesion" or "Tumefactive MS" you will find several stories that are similar to mine. It is rare, but there is precedent for such confusion over diagnosing a lesion and symptoms.
14. Every doc has a different opinion about my diagnosis or non-diagnosis. The neurologist here completely disagrees with the Mayo doc. The Mayo doc disagrees with the neurologists back at Desert. I honestly don't think we have found the doc I want to work with long term.
15. Without more information, the puzzle pieces of my case are not going to fit together. Hopefully follow up MRI's will tell us what we need to know.
Next Steps: We are hoping I will break out of the hospital later this week. (My birthday is Friday, and I am dropping some very not-subtle hints to the docs and therapists here!!) When they release me from here, the next step will be physical and occupational therapy at home for a couple weeks. As soon as the therapists are comfortable that I am safe with daily tasks at home, and able to transfer to a facility, I will begin outpatient therapy. Sadly for my family, I will be completely dependent on them to get me to and from therapy. (This has all been a tremendous lesson in accepting help. My family has been amazing in helping me and supporting me in every way; I really couldn't feel more loved.) I have an appointment with another MS specialist (Dr. Grainger) on December 15th (he is supposedly better than the Mayo doc, so we'll see. We are kind of shopping around for someone we really like). No matter who I am working with, we will repeat that MRI in about six weeks to see how things have changed.
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