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Appointment today -
Hi all,
I thought I'd give an update. I had my appointment with my MSologist today. I
also saw her resident physician who did ghe exam and spent about 30 minutes going over my history. The bottom line is:
After examination, the doctor indicated I have symptoms that indicate an issue in my t-spine. I have right foot weakness and decreased sensation as well as MS hug symptoms but she felt that since my symptoms are mild it would be a "fishing expedition."
I have a couple questionable areas on my MRI. My friend "spot" is a periventricular lesion but she said it's not specific. It's not nodular and isnt in a typical presenting location. It was 'something' though. She looked at the other sequences and explained the other areas to me. I could see she wasn't happy with my MRI at that point because she mentioned getting a new full MRI's for comparables under MS protocol with t-spine to the resident and me.
She also mentioned a SSEP and explained what all these tests do. She went into detail about diagnosing in absence of obvious MRI's findings so her plan is the cost effective and fastest approach considering I have already had so many MRI's. She doing the spinal tap next Wednesday and getting a referral to a Neuro-Opthm. because the Neuro-Opth can see things they can't. If the spinal is negative then full MRI's again and SSEP. If the spinal tap is positive we move to treatment.
I was super happy with both doctors. I left knowing what they "saw" wrong with me and reassured that they are going to run more blood work alone and against the spinal tap to rule out the more elusive mimics, infection and cancer. She also told me that the good news while frustrating for me is that it's not *obvious* I'm sick and my tests are relatively ok with abnormalities scattered. It means that if this is MS it's caught early enough and its not likely a life threatening issue if it's not.
I have spent the better part of this year questioning certain issues going on but my doctor with one question to me about my right foot, confirmed I'm spot on. I have right foot weakness. I noticed it dragging while I was walking and didn't say anything about it. She caught it on my tip toe test. I am in the right place now. Thank the Lord!
So, while no diagnosis, I feel she is suspicious, seeking answers and going to figure this out. She assured me that even if nothing definitive shows positive right away, she will continue to run MRI's periodically and other tests. Follow me.
There was more but ultimately, she is working on dx in the absence of obvious MRI findings.
I thought I'd give an update. I had my appointment with my MSologist today. I
also saw her resident physician who did ghe exam and spent about 30 minutes going over my history. The bottom line is:
After examination, the doctor indicated I have symptoms that indicate an issue in my t-spine. I have right foot weakness and decreased sensation as well as MS hug symptoms but she felt that since my symptoms are mild it would be a "fishing expedition."
I have a couple questionable areas on my MRI. My friend "spot" is a periventricular lesion but she said it's not specific. It's not nodular and isnt in a typical presenting location. It was 'something' though. She looked at the other sequences and explained the other areas to me. I could see she wasn't happy with my MRI at that point because she mentioned getting a new full MRI's for comparables under MS protocol with t-spine to the resident and me.
She also mentioned a SSEP and explained what all these tests do. She went into detail about diagnosing in absence of obvious MRI's findings so her plan is the cost effective and fastest approach considering I have already had so many MRI's. She doing the spinal tap next Wednesday and getting a referral to a Neuro-Opthm. because the Neuro-Opth can see things they can't. If the spinal is negative then full MRI's again and SSEP. If the spinal tap is positive we move to treatment.
I was super happy with both doctors. I left knowing what they "saw" wrong with me and reassured that they are going to run more blood work alone and against the spinal tap to rule out the more elusive mimics, infection and cancer. She also told me that the good news while frustrating for me is that it's not *obvious* I'm sick and my tests are relatively ok with abnormalities scattered. It means that if this is MS it's caught early enough and its not likely a life threatening issue if it's not.
I have spent the better part of this year questioning certain issues going on but my doctor with one question to me about my right foot, confirmed I'm spot on. I have right foot weakness. I noticed it dragging while I was walking and didn't say anything about it. She caught it on my tip toe test. I am in the right place now. Thank the Lord!
So, while no diagnosis, I feel she is suspicious, seeking answers and going to figure this out. She assured me that even if nothing definitive shows positive right away, she will continue to run MRI's periodically and other tests. Follow me.
There was more but ultimately, she is working on dx in the absence of obvious MRI findings.
A large hunk of my husband's family used to live in the Seattle area. I never stepped foot inside Swedish but I remember many, many VERY positive references to the care people receive there. Hubby's sister (who worked at UW) was treated for stage 4B Hodgkin’s disease at Swedish.
This was back in the early to mid 70's. Today, Hodgkin’s is considered one of the most curable forms of cancer. Back then, treatment and cure weren't the things most people with that degree of involvement could even contemplate. Swedish allowed her to live it.
Almost forty years later and I'm still thinking 'miracle place' upon seeing the name Swedish.
Sorry for going so OT. Guess I wanted you to know that somebody here realizes what a grand prize you've won with your persistence.
Mary
This was back in the early to mid 70's. Today, Hodgkin’s is considered one of the most curable forms of cancer. Back then, treatment and cure weren't the things most people with that degree of involvement could even contemplate. Swedish allowed her to live it.
Almost forty years later and I'm still thinking 'miracle place' upon seeing the name Swedish.
Sorry for going so OT. Guess I wanted you to know that somebody here realizes what a grand prize you've won with your persistence.
Mary
Mary,
My doctor is the one doing my spinal tap. This place is set up like a teaching hospital so everything is right there. She already went through what the procedure entailed, where she goes in to get the fluid and how they also draw blood to run the tests against it. She is also planning out running more labs on my blood draw at the same time. She mentioned a couple diseases that are mimic's that I never heard of before so those will be done as well.
She gave me a prescription for valium, told me to take it despite having three babies and knowing what an epidural feels like. She said this will be similar but they are drawing fluid out, it will take a longer I guess. I am luckily a rare person that does drink water so I'm usually pretty well hydrated and I'll just before to push fluids the night before and in the morning. I need to find my handy 32oz container again. That will help measure what I'm drinking. :)
Yeah - this facility is AMAZING. They have a full floor of boutique stores and Starbucks! :) I forgot to mention is also a merging of doctor's from the MS Hub --- so it's UWMC, MS Hub and Swedish. I can sense the changes coming in my care and treatment.
My doctor is the one doing my spinal tap. This place is set up like a teaching hospital so everything is right there. She already went through what the procedure entailed, where she goes in to get the fluid and how they also draw blood to run the tests against it. She is also planning out running more labs on my blood draw at the same time. She mentioned a couple diseases that are mimic's that I never heard of before so those will be done as well.
She gave me a prescription for valium, told me to take it despite having three babies and knowing what an epidural feels like. She said this will be similar but they are drawing fluid out, it will take a longer I guess. I am luckily a rare person that does drink water so I'm usually pretty well hydrated and I'll just before to push fluids the night before and in the morning. I need to find my handy 32oz container again. That will help measure what I'm drinking. :)
Yeah - this facility is AMAZING. They have a full floor of boutique stores and Starbucks! :) I forgot to mention is also a merging of doctor's from the MS Hub --- so it's UWMC, MS Hub and Swedish. I can sense the changes coming in my care and treatment.
Ren, yeah - it makes sense to me. I'm not happy about having a spinal tap but I like the idea of ruling out cancer in my CNS too. I have to admit that's been a concern. My logic tells me it would have already shown it's ugly face but you never know. It will bring peace of mind and that is worth the risk to me. It just made so much sense....SO NICE!
My last Neuro told me that she didn't want to do it until I was flared again --- she didn't feel the test was conclusive (I know it's not fully) enough unless you are sick and your CNS might have antibodies. Funny, in a not so funny way, I was flared when I saw her and she totally ignored my complaint of new symptoms and didn't do a new exam. Clearly not the right place for me.
My last Neuro told me that she didn't want to do it until I was flared again --- she didn't feel the test was conclusive (I know it's not fully) enough unless you are sick and your CNS might have antibodies. Funny, in a not so funny way, I was flared when I saw her and she totally ignored my complaint of new symptoms and didn't do a new exam. Clearly not the right place for me.
It's good to hear you came away with your dignity intact and a sense of satisfaction. You must feel like you've found a safe place.
PLEASE, PLEASE, PLEASE make sure they do a peripheral bllod draw at the time of the LP. Testing for MS requires camparing samples of cerebral spinal fluid and blood serum obtained on the same day.
The doctor doing the LP should know this. Radiology personnel should know this. Lab personnel should know this. Somehow it still gets missed too often. Refuse to go home if they haven't drawn blood to go with the CSF sample. Just ask Lisa!
Stay as calm as you can before and during the LP (do you meditate or know natural childbirth techiques?), stay hydrated before and after the test and rest flat for 24 hours after the procedure. You'll do fine. The largest MS research facility in the NW probably does more of these than anyone, anywhere else. They will get you through.
Mary
PLEASE, PLEASE, PLEASE make sure they do a peripheral bllod draw at the time of the LP. Testing for MS requires camparing samples of cerebral spinal fluid and blood serum obtained on the same day.
The doctor doing the LP should know this. Radiology personnel should know this. Lab personnel should know this. Somehow it still gets missed too often. Refuse to go home if they haven't drawn blood to go with the CSF sample. Just ask Lisa!
Stay as calm as you can before and during the LP (do you meditate or know natural childbirth techiques?), stay hydrated before and after the test and rest flat for 24 hours after the procedure. You'll do fine. The largest MS research facility in the NW probably does more of these than anyone, anywhere else. They will get you through.
Mary
Lisa - I am relieved, I really am. As you know, it's not all that important to be "right." No, I'm not looking for that. I'm seeking guidance and in many ways willpower. I need that right now. There is something wrong with me and I need the willpower to sustain it.
The doctor that initially saw me was AWESOME! I felt she was "involved" and genuinely interested. The specialist was just full of information, compassion and direction. I'm not sure how they did it but they managed to pull off doing exactly as you said.
Jens - I saw the Director at Swedish Neuroscience Institute in Issaquah, WA. This "satellite" is compilation of University of Washington and Swedish Medical Center's Neurology unit. It is now the largest MS research facility in the NW.
You had stated that some of my symptoms seemed spinal in origin to you. It seems you were right on with a few things weren't you? I wanted to attribute it to something else. I am not sure what you call having "weakness in your right foot is"...early foot drop? I don't know.
Carol - I really feel good about this. I really do. Thank you. I needed a break. I was feeling so left hung out to dry. Sad place to be.
I received a follow-up call from the Medical Coordinator this evening. They are "fitting in" the spinal tap between schedules. They are typically booked out a month or more. My doctor made it work. I feel blessed. The rest of the items above are going to wait until I see her again at that appointment Wednesday then she will decide where we go from there.
I'm nervous about the spinal tap but with how crappy I've felt this last year or so... this is moving forward. I never thought I'd agree to a spinal tap. I'm just scared.
The doctor that initially saw me was AWESOME! I felt she was "involved" and genuinely interested. The specialist was just full of information, compassion and direction. I'm not sure how they did it but they managed to pull off doing exactly as you said.
Jens - I saw the Director at Swedish Neuroscience Institute in Issaquah, WA. This "satellite" is compilation of University of Washington and Swedish Medical Center's Neurology unit. It is now the largest MS research facility in the NW.
You had stated that some of my symptoms seemed spinal in origin to you. It seems you were right on with a few things weren't you? I wanted to attribute it to something else. I am not sure what you call having "weakness in your right foot is"...early foot drop? I don't know.
Carol - I really feel good about this. I really do. Thank you. I needed a break. I was feeling so left hung out to dry. Sad place to be.
I received a follow-up call from the Medical Coordinator this evening. They are "fitting in" the spinal tap between schedules. They are typically booked out a month or more. My doctor made it work. I feel blessed. The rest of the items above are going to wait until I see her again at that appointment Wednesday then she will decide where we go from there.
I'm nervous about the spinal tap but with how crappy I've felt this last year or so... this is moving forward. I never thought I'd agree to a spinal tap. I'm just scared.
What a great doctor you have found! I like the approach to a diagnosis and cost -effective at that. Sounds like you have a keeper.
Let us know the results.
Ren
Let us know the results.
Ren
It sounds like you have really found yourself a good doctor... I'm so happy for you... One way or the other I'm sure she will get to the bottom of this... You are well on your way my friend!!!
I'll be praying,
Carol
I'll be praying,
Carol
I'm elated to hear the news of doctors of compassion and approaching your health in the best way possible. It is nice to read how they can be thorough, caring, compassionate, and taking time to explain things, especially the direction they are going to take you as a patient.
I wish you much luck with your tests and hopefully a diagnosis that you can live with and get treated for it.
Lisa
I wish you much luck with your tests and hopefully a diagnosis that you can live with and get treated for it.
Lisa
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