We had a really nice Christmas! Thanks to everyone who helped us survive the holiday season, and to all those who helped make our day so special!!
Saturday, December 26, 2015
Monday, December 21, 2015
Traumatic EMG Testing: December 2015
One of the many tests that everyone
helped us fund (thank you!!) was my EMG testing. Because of my muscle
weakness, my absent ankle reflexes, brisk arm reflexes, and the abnormal
muscle biopsy (which shows muscle denervation), my neurologist ordered
full EMG studies of both arms and both legs.
I meant to post about this last week, but honestly I was too traumatized to keep thinking about it. I knew the test involved electrical shocks, and I even knew it involved needle testing. I've even had this test once before in 2012. But I have to say, I was not prepared for what happened. I guess at this point we need to be super thorough, so the testing was nothing short of extensive. And traumatizing.
I was expecting the test to be simple, and thought that I would go to these tests alone. Fortunately, my wise mother insisted on taking off work to drive me on both days. They did my arm testing on one day, and my leg testing the next. At first I was bugged that they would make me schedule on two different days. (The testing was in Glendale, so it was pretty inconvenient to drive out there twice.) But after the first day, I realized why they required separating the tests. I wouldn't have survived both in one day.
To put it simply, the first day they did extensive shock testing to look for Myasthenia Gravis (MG). My muscles weaken dramatically with repeat strength testing in the clinic, so MG was added to the list of possible diagnoses (for my neurological symptoms, not my brain lesion). For this part of the test, they take metal prongs and jab them into specific areas of your muscles, and then send electrical shocks. Because MG is a disease where your muscles fatigue with repeat stimulation, the test involves repeated shocks. One shock was enough to make my whole body jump off the table. They would do test shocks, and then run seven shocks in a row. This was repeated in several locations, on both arms. I can't even say. It was awful. I was holding it together, but just barely.
There were several other less dramatic shock studies. Then came the needle studies. I'm not going to lie, I cried through the whole thing. Like a baby. Super awkward.
They stabbed a full size need probe (I was expecting some kind of acupuncture needle--wrong!) into various sites in my muscles to read the electrical signals as the muscles were moving. I think they picked eight different sites on each arm, and the tested (stabbed) each site several times. Just to be thorough. They made me flex my muscles into the needle, which was the worst part. My arms were bleeding from dozens of spots, I was crying like a baby. The whole thing was a big mess. So much for being tough. My mom was so great, she helped me focus on my breathing instead of what was happening. I almost couldn't do it, but that really did help.
The hardest part was coming back the next day to repeat all of that on my legs. Like I said, it was pretty traumatic.
EMG Results
The results suggested muscle disease, so at least maybe that points us in a right direction. It ruled out Myasthenia Gravis and ALS (thank the heavens!) but didn't point to any specific diagnosis. They are sending me to a neuromuscular specialist to take a deeper look at this. Hopefully we are getting closer to some answers.
I meant to post about this last week, but honestly I was too traumatized to keep thinking about it. I knew the test involved electrical shocks, and I even knew it involved needle testing. I've even had this test once before in 2012. But I have to say, I was not prepared for what happened. I guess at this point we need to be super thorough, so the testing was nothing short of extensive. And traumatizing.
I was expecting the test to be simple, and thought that I would go to these tests alone. Fortunately, my wise mother insisted on taking off work to drive me on both days. They did my arm testing on one day, and my leg testing the next. At first I was bugged that they would make me schedule on two different days. (The testing was in Glendale, so it was pretty inconvenient to drive out there twice.) But after the first day, I realized why they required separating the tests. I wouldn't have survived both in one day.
To put it simply, the first day they did extensive shock testing to look for Myasthenia Gravis (MG). My muscles weaken dramatically with repeat strength testing in the clinic, so MG was added to the list of possible diagnoses (for my neurological symptoms, not my brain lesion). For this part of the test, they take metal prongs and jab them into specific areas of your muscles, and then send electrical shocks. Because MG is a disease where your muscles fatigue with repeat stimulation, the test involves repeated shocks. One shock was enough to make my whole body jump off the table. They would do test shocks, and then run seven shocks in a row. This was repeated in several locations, on both arms. I can't even say. It was awful. I was holding it together, but just barely.
 |
| Right Before Testing Started |
There were several other less dramatic shock studies. Then came the needle studies. I'm not going to lie, I cried through the whole thing. Like a baby. Super awkward.
They stabbed a full size need probe (I was expecting some kind of acupuncture needle--wrong!) into various sites in my muscles to read the electrical signals as the muscles were moving. I think they picked eight different sites on each arm, and the tested (stabbed) each site several times. Just to be thorough. They made me flex my muscles into the needle, which was the worst part. My arms were bleeding from dozens of spots, I was crying like a baby. The whole thing was a big mess. So much for being tough. My mom was so great, she helped me focus on my breathing instead of what was happening. I almost couldn't do it, but that really did help.
The hardest part was coming back the next day to repeat all of that on my legs. Like I said, it was pretty traumatic.
EMG Results
The results suggested muscle disease, so at least maybe that points us in a right direction. It ruled out Myasthenia Gravis and ALS (thank the heavens!) but didn't point to any specific diagnosis. They are sending me to a neuromuscular specialist to take a deeper look at this. Hopefully we are getting closer to some answers.
Wednesday, December 16, 2015
My Story: The Quick Update
Four years ago, I was very healthy and very active. I was an account manager for a digital advertising company. I worked full time, managed over 160 clients, hit the gym 3-5 times a week, ate healthy, traveled far and wide, and never needed anything more than an urgent care doctor.
In Sept-Oct 2011, I got really sick, eventually couldn't walk, and we found a giant lesion in my brain. They spent months trying to determine if the lesion was a rare version of MS (called Tumefactive MS), a lymphoma, or a tumor. After a spinal tap, they decided it was most likely Tumefactive Multiple Sclerosis. In that first year I spent over 90 days in the hospital, and had to re-learn how to walk, due to extreme muscle weakness and nerve damage. I worked with Barrow Neurology and the Mayo Clinic during that time. I was extremely sick for about two years, then things started to even out. (I'm obviously skipping alot here!)
In 2014 I spent a great deal of time managing my health, but as long as I stayed on top of my strength training, healthy eating, bedtimes, and didn't do too much or stay up too late, I was pretty steady. My brain lesion seemed to stabilize, and I assumed it would be a non-issue, moving forward. During that year I met and fell in love with James, who I married in April 2015. (that's really the best part of this story!!)
In late August of 2015, I started having almost constant sick days--I just felt run down, the way you would during a nasty flu. Tired, achy--even small things feel like big chores. I started noticing weakness in my legs, and spent several weeks pretending it wasn't happening. (Sometimes that works, and things go away!) Eventually my legs got so weak that climbing stairs and doing daily activities became difficult and started causing pain, as my muscles were no longer supporting my joints properly. We noticed a significant amount of muscle atrophy in my quads, which was really upsetting to me, because I worked really hard to rebuild those muscles!! Doctors ordered an open muscle biopsy of my leg (a three inch incision--ouch!) which showed muscle denervation without reinnervation---basically, the nerves in my muscles are dying, so in certain spots my muscles are not connected to my brain.
My recent MRI shows that this brain lesion is growing (I have gotten three opinions). Neurologists are saying that at this point it looks most like a slow growing tumor (glioma) or a vascular malformation. They all have different opinions about which is more likely, but they all agree that it's important to find out. Obviously you can imagine the risks of a tumor. For the vascular malformation, they say it would likely be a capillary type malformation, a sub-type of an AVM. One doc said it could be a cavernous malformation. As if the biopsy wasn't risky enough, one doc said that if we try to biopsy this and it turns out to be a vascular mass, it could cause a hemorrhage in my brain. Obviously that's bad. So we are going to do everything we can to find a diagnosis without a biopsy. That means long days and expensive tests.
Docs also agree that whatever is causing this brain lesion is likely separate from most of my symptoms (Fatigue, leg muscle weakness, arm/hand stiffness, muscle atrophy, nerve pain, leg pain, muscle twitching, abnormal reflexes, feeling sick, etc) Meaning I have this brain lesion and a separate neurological condition. More details below in the neurologist update, but they are thinking it could be MS, Myasthenia Gravis, Stiff Person Syndrome, or a handful of other neurological conditions. So they are running tests for that too.
That's the basic update. See full update below for more details, or specifics on which tests we are going to run. Thanks so much for all the prayers and support, it means so much to me and to my family.
In Sept-Oct 2011, I got really sick, eventually couldn't walk, and we found a giant lesion in my brain. They spent months trying to determine if the lesion was a rare version of MS (called Tumefactive MS), a lymphoma, or a tumor. After a spinal tap, they decided it was most likely Tumefactive Multiple Sclerosis. In that first year I spent over 90 days in the hospital, and had to re-learn how to walk, due to extreme muscle weakness and nerve damage. I worked with Barrow Neurology and the Mayo Clinic during that time. I was extremely sick for about two years, then things started to even out. (I'm obviously skipping alot here!)
In 2014 I spent a great deal of time managing my health, but as long as I stayed on top of my strength training, healthy eating, bedtimes, and didn't do too much or stay up too late, I was pretty steady. My brain lesion seemed to stabilize, and I assumed it would be a non-issue, moving forward. During that year I met and fell in love with James, who I married in April 2015. (that's really the best part of this story!!)
In late August of 2015, I started having almost constant sick days--I just felt run down, the way you would during a nasty flu. Tired, achy--even small things feel like big chores. I started noticing weakness in my legs, and spent several weeks pretending it wasn't happening. (Sometimes that works, and things go away!) Eventually my legs got so weak that climbing stairs and doing daily activities became difficult and started causing pain, as my muscles were no longer supporting my joints properly. We noticed a significant amount of muscle atrophy in my quads, which was really upsetting to me, because I worked really hard to rebuild those muscles!! Doctors ordered an open muscle biopsy of my leg (a three inch incision--ouch!) which showed muscle denervation without reinnervation---basically, the nerves in my muscles are dying, so in certain spots my muscles are not connected to my brain.
My recent MRI shows that this brain lesion is growing (I have gotten three opinions). Neurologists are saying that at this point it looks most like a slow growing tumor (glioma) or a vascular malformation. They all have different opinions about which is more likely, but they all agree that it's important to find out. Obviously you can imagine the risks of a tumor. For the vascular malformation, they say it would likely be a capillary type malformation, a sub-type of an AVM. One doc said it could be a cavernous malformation. As if the biopsy wasn't risky enough, one doc said that if we try to biopsy this and it turns out to be a vascular mass, it could cause a hemorrhage in my brain. Obviously that's bad. So we are going to do everything we can to find a diagnosis without a biopsy. That means long days and expensive tests.
Docs also agree that whatever is causing this brain lesion is likely separate from most of my symptoms (Fatigue, leg muscle weakness, arm/hand stiffness, muscle atrophy, nerve pain, leg pain, muscle twitching, abnormal reflexes, feeling sick, etc) Meaning I have this brain lesion and a separate neurological condition. More details below in the neurologist update, but they are thinking it could be MS, Myasthenia Gravis, Stiff Person Syndrome, or a handful of other neurological conditions. So they are running tests for that too.
That's the basic update. See full update below for more details, or specifics on which tests we are going to run. Thanks so much for all the prayers and support, it means so much to me and to my family.
Tuesday, December 15, 2015
Neuroradiologist Update, Dec 2015
December 2015 - My bishop has an uncle that is a neuro radiologist. I got the chance to speak with him directly, which was really neat. Normally I just hear what the radiologists said through another doctor. He had clearly studied my films in depth, and took a good amount of time explaining things to me--such a blessing! He agrees that my brain lesion could not be MS. He also agrees that there are probably two things going on --the lesion and a separate condition. He agrees that the brain lesion is growing, and stated that he feels it is either a low grade glioma (slow growing tumor) or a vascular malformation, specifically a capillary type malformation, which is a sub-type of AVM. He says that in his opinion, the vascular malformation is more likely, but its a very unusual lesion, so its hard to say with certainty. He said the enhancement should be growing it if was a glioma, but its more of the swelling and scarring in my brain that seems to be growing, which he believes makes a vascular lesion more likely. He said that even if its a vascular lesion, we will need to consider treatment (I didn't know that). He said that a vascular lesion like this could hemmorage and cause permanent damage because of where it's located. I'm not actually sure what those treatment decisions would look like, but he said that would be something to discuss with my docs when we get a diagnosis. He also said that in his opinion, he would NOT biopsy this lesion, because if it was a vascular lesion and we tried to biopsy, we could cause a hemmorage. He suggested we start with an MR Spectroscopy and CT Angiogram (both on the list from my neurologist! Smart docs!) He said if the CT Angiogram is not conclusive, we should do a traditional Angiogram (where they put a catheter into the vessels and send it to the problem spot for imaging). He said to keep in touch with further results, and was very helpful. It was really amazing to talk to a neuroradiologist, and grateful for this opinion. I will keep fighting to avoid the biopsy.
Neurologist Update, Dec 2015
December 2015 - I met with my new neurologist, Dr. Donlon. She agrees with Dr. Okuda that we need to figure out what this brain lesion is. We discussed the following items:
- She believes there are two things happening here. A brain lesion and a neurological disease. She said its the only thing that makes sense. So we are searching for two answers now. Tests on the brain lesion, and tests to figure out why I'm having muscle weakness, fatigue, nerve pain, stiff hands, etc.
- We need to rule out the possibility of a vascular lesion. It has to be considered, before we think of a biopsy. She suggests this could be a cavernous malformation.
- Doc states that in her opinion, this brain lesion looks more like a glioma (tumor) than anything else. She said these gliomas can be slow growing for 3-5 years, and then start growing rapidly. She is very straight with me that there could come a day when a biopsy is our only move. She states that she will do everything she can to get us some answers without a biopsy.
- Doc says my symptoms make her think Myasthenia Gravis or Stiff Person Syndrome
- Neuro tests point to Myasthenia or similar condition (muscle weakness increases with repeat testing)
- Reflexes abnormal: Arm reflexes brisk and ankle reflexes absent. Knee reflexes normal.
- We talked about the smaller lesions in my brain. She said they appear to have resolved, but its possible we are just not seeing them in current scans (the MRI machine takes pictures at certain intervals, so it can miss things). She wants a complete scan to see if the smaller lesions are still there. Either way, its a clue about what's going on. If they have actually resolved, it could mean that the neurological process here is Multiple Sclerosis. So that would mean a giant lesion AND MS. The bigger lesion is definitely not part of it.
- Doc orders several tests, including a
1. A repeat MR Spectroscopy (to measure chemicals in my brain) this often can give clues about what is growing there. We did one in 2011 and it was inconclusive.
2. A complete brain MRI (looking for those smaller lesions.)
3. Complete T-spine and C-spine MRIs (She wants to see if anything in my spine accounts for my leg weakness, and wants to see if there is any evidence there of MS or other neurological disease.)
4. Nerve conduction studies of both arms and both legs (looking for answers to muscle weakness, stiff hands, and abnormal reflexes).
5. Paraneoplastic Panel of labs, looking for cancer markers.
6. Tests for Stiff Man Syndrome
7. Tests for Myasthenia Gravis (i tested positive for antibodies in the past.)
8. Tests for Williams Syndrome and Copper Toxicity
9. Tests for a variety of other neuro conditions
10. PET scan of my brain
- She believes there are two things happening here. A brain lesion and a neurological disease. She said its the only thing that makes sense. So we are searching for two answers now. Tests on the brain lesion, and tests to figure out why I'm having muscle weakness, fatigue, nerve pain, stiff hands, etc.
- We need to rule out the possibility of a vascular lesion. It has to be considered, before we think of a biopsy. She suggests this could be a cavernous malformation.
- Doc states that in her opinion, this brain lesion looks more like a glioma (tumor) than anything else. She said these gliomas can be slow growing for 3-5 years, and then start growing rapidly. She is very straight with me that there could come a day when a biopsy is our only move. She states that she will do everything she can to get us some answers without a biopsy.
- Doc says my symptoms make her think Myasthenia Gravis or Stiff Person Syndrome
- Neuro tests point to Myasthenia or similar condition (muscle weakness increases with repeat testing)
- Reflexes abnormal: Arm reflexes brisk and ankle reflexes absent. Knee reflexes normal.
- We talked about the smaller lesions in my brain. She said they appear to have resolved, but its possible we are just not seeing them in current scans (the MRI machine takes pictures at certain intervals, so it can miss things). She wants a complete scan to see if the smaller lesions are still there. Either way, its a clue about what's going on. If they have actually resolved, it could mean that the neurological process here is Multiple Sclerosis. So that would mean a giant lesion AND MS. The bigger lesion is definitely not part of it.
- Doc orders several tests, including a
1. A repeat MR Spectroscopy (to measure chemicals in my brain) this often can give clues about what is growing there. We did one in 2011 and it was inconclusive.
2. A complete brain MRI (looking for those smaller lesions.)
3. Complete T-spine and C-spine MRIs (She wants to see if anything in my spine accounts for my leg weakness, and wants to see if there is any evidence there of MS or other neurological disease.)
4. Nerve conduction studies of both arms and both legs (looking for answers to muscle weakness, stiff hands, and abnormal reflexes).
5. Paraneoplastic Panel of labs, looking for cancer markers.
6. Tests for Stiff Man Syndrome
7. Tests for Myasthenia Gravis (i tested positive for antibodies in the past.)
8. Tests for Williams Syndrome and Copper Toxicity
9. Tests for a variety of other neuro conditions
10. PET scan of my brain
2015 Catch Up
April 2015 - James and I get married!!
Sept 2015 - I start having regular sick days, and my leg muscles and hip muscles are feeling weak.
October 2015 - Hip and leg muscles are so weak they are causing horrible pain in my knees, hips, lower back. I feel unsteady when walking, I can barely make it through my days, and climbing stairs in our house is very difficult.
October 2015 - I am losing significant amounts of muscle mass in my quads
October 2015 - My doctor orders a muscle biopsy, which shows "muscle denervation, without evidence of reinnervation" and a series of other things. It rules out primary muscle disease, and lets us know this is a neurological disease affecting my leg muscles, but it doesn't tell us which disease.
November 2015 - My right leg (where they took the biopsy) starts to lose more of its mass. We measured an inch of muscle lost in my right leg, that didn't happen in my left. I get horrible pain in my right knee because my muscles are not supporting it properly. I start physical therapy, and start wearing a brace to help support my right leg and protect my knee.
November 2015 - I start to notice stiffness in my hands. I can still use them, but they feel stiff and often contract when I am not paying attention.
November 2015 - Muscle twitching and nerve pain all get worse, especially at night.
July-Nov 2015 - I fight with my insurance to let me go to the Mayo clinic. Mayo and all my other docs write letters to the insurance, stating that Mayo are the only ones who can help me with my complex case. In the past I have paid out of pocket, but can't afford it now. My insurance company requires me to see another neurologist first (who takes one look at my case and says its too big for him) and then they refuse to let me see Mayo anyways.
November 2015 - My interim neurologist runs a new MRI for me, but states that he does not feel qualified to handle my case, and recommends I find a way to get into Mayo. He writes a letter stating this to my insurance company.
November 2015 - I reach out to my old neurologist (Dr. Darin Okuda) from Barrow (the one who moved to Texas). He knows my case better than any other doctor, and wondered if he could help, given the situation. He looks at my MRI, then calls to give me results. He says my brain lesion is growing, which is obviously a problem. He suggests that at some point we may have to do a brain biopsy. Of all the docs to recommend that, he is the only one I would trust to make that call (he protected me from it so many times in the past!) But he said hopefully there are still tests we can run before that. He recommends a neurologist (who takes my insurance--yay!!) that he used to work with, and says he will coordinate with her and catch her up on my case. The new neurologist is Dr. Stacy Donlon.
Sept 2015 - I start having regular sick days, and my leg muscles and hip muscles are feeling weak.
October 2015 - Hip and leg muscles are so weak they are causing horrible pain in my knees, hips, lower back. I feel unsteady when walking, I can barely make it through my days, and climbing stairs in our house is very difficult.
October 2015 - I am losing significant amounts of muscle mass in my quads
October 2015 - My doctor orders a muscle biopsy, which shows "muscle denervation, without evidence of reinnervation" and a series of other things. It rules out primary muscle disease, and lets us know this is a neurological disease affecting my leg muscles, but it doesn't tell us which disease.
November 2015 - My right leg (where they took the biopsy) starts to lose more of its mass. We measured an inch of muscle lost in my right leg, that didn't happen in my left. I get horrible pain in my right knee because my muscles are not supporting it properly. I start physical therapy, and start wearing a brace to help support my right leg and protect my knee.
November 2015 - I start to notice stiffness in my hands. I can still use them, but they feel stiff and often contract when I am not paying attention.
November 2015 - Muscle twitching and nerve pain all get worse, especially at night.
July-Nov 2015 - I fight with my insurance to let me go to the Mayo clinic. Mayo and all my other docs write letters to the insurance, stating that Mayo are the only ones who can help me with my complex case. In the past I have paid out of pocket, but can't afford it now. My insurance company requires me to see another neurologist first (who takes one look at my case and says its too big for him) and then they refuse to let me see Mayo anyways.
November 2015 - My interim neurologist runs a new MRI for me, but states that he does not feel qualified to handle my case, and recommends I find a way to get into Mayo. He writes a letter stating this to my insurance company.
November 2015 - I reach out to my old neurologist (Dr. Darin Okuda) from Barrow (the one who moved to Texas). He knows my case better than any other doctor, and wondered if he could help, given the situation. He looks at my MRI, then calls to give me results. He says my brain lesion is growing, which is obviously a problem. He suggests that at some point we may have to do a brain biopsy. Of all the docs to recommend that, he is the only one I would trust to make that call (he protected me from it so many times in the past!) But he said hopefully there are still tests we can run before that. He recommends a neurologist (who takes my insurance--yay!!) that he used to work with, and says he will coordinate with her and catch her up on my case. The new neurologist is Dr. Stacy Donlon.
Friday, December 11, 2015
2014 & 2015 Update
I think I can summarize 2014 and 2015 with just a couple pictures! In 2014, my health evened out and became quite manageable (with some extra effort)! I still had some ups and downs, but overall things were better. I met this amazing man, we fell in love, and got married!! He has been the greatest blessing in my life! My health has become more of a challenge recently, and I couldn't be more grateful for his love and support. I am a blessed girl!
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