6 replies to this topic

[Epiphany]

Hello everyone, my name is Epiphany. I am an 18 year old female diagnosed with epilepsy, primary progressive multiple sclerosis, and "magic" paralysis. My story is a very confusing one so, I will try to keep it short and sweet.

"magic paralysis"

Why did I write this? Well, I am 18 years old, I just barely breached the doors of adulthood, and I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS). For one, this is entirely unusual and a rare occurance in a person as young as I am.

I also have Hereditary Intractible Epilepsy. Basically that means, I have a form of epilepsy that does not respond well to medications. I have to take a cocktail everyday and switch out what medications I am taking every three weeks. I am currently on Keppra, Neurontin, Dilantin, Tenormin, and Flexiril. I switch the Dilantin with Keppra every three weeks.

I still have not touched on the magic paralysis. Well, I will start with July 20th of this year. On July 20th, I went into a Grand Mal seizure. I did fall, but it was not a significant fall. Upon coming out of this 2 minute seizure, I went into another seizure that lasted 3 minutes. This is normal for me as my seizures come in small clusters of 3-5 at a time. About an hour later, I was able to get up and move around. However, my left foot seemed to drag. I did not think anything of it because my seizures frequently cause left-sided weakness. The weakness did not relent. About an hour later, my right foot started to drag. By this point, I was tripping and struggling to walk. I found myself over compensating for the drag. I immediantly scheduled an appointment with my podiatrist. (He had done two surgeries on my right ankle in the past couple months)

Over that weekend, my shins were in extreme pain, and the drag was getting worse. I could not pick up my feet or wiggle my toes. But I still had feeling. When I saw my pod., he said I had bilateral foot drop. However, he was stumped as to how I could have shown these symptoms in such a small time period. He ordered land and aquatic PT and for me to see my neurologist.

PT did not help with the movement, and my neuro ordered an MRI of my lumbar spine. As I was waiting for the MRI to be scheduled the weakness progressed up my legs to just above my knees and seemed to settle there. When the MRI came back, it showed a disk herniation of the L4-L5 region and a bulge at the S1-S2 region. I had a syrinx in my T-Spine and one in my C-Spine. I also have mild degenerative disk disease in my C4-C7 region.

So, on Aug. 19th, my neuro gave me a call and told me that I needed to go to the hospital immediately to have emergency surgery done on the disk herniation. About ten minutes later, a neurosurgeon gave me a call and said the same thing. Well, a day before, my GP gave me a medrol pack. Then upon arriving at the ER at this hospital, I was given IV steriods. When I was finally admitted and reevaluated for the surgery, the neurosurgeon came in and told me that it was no longer necessary. Bullcrap!

I'll speed up now. So, I was evaluated for some Townsend KAFOs and eventually fitted. All whilst pursuing a Phil. Pre-Law major. I was using forearm crutches at that point. On Sep. 26th, I went into severe status epilepticus (continuous seizures with no time to breath). My boyfriend came immediately to my dorm room when my roomie called him. I was transported to the local ER. There I was still seizing. (45 minutes-1 hour of seizing total). They loaded me with Adivan, which eventually stopped the seizures. I was placed under Crit. Care and transferred to the ICU.

Since the neuros, locally, were being totally indecisive, I refused their consultation. I was transferred to Pittsburgh for further treatment. There, I underwent a whole barrage of testing. All which showed little to nothing. My EEGs, like always, were abnormal. My Potassium, abnormal. My calcium, abnormal. I was also dubbed anemic and given iron. The Evoked Potential was abnormal. However, the EMG was normal. Yet, I was paralyzed from mid-stomach down.

Over the three weeks I was there, the reason for my T-12 paralysis remained a mystery. They stabbed my in the foot with needles, scraped me with keys, and hit me with hammers. Yet, it yielded nothing more than "conversions". Okay, I was diagnosed with anxiety. But if you were going to college with active epilepsy, magical drop foot, and interim PPMS; would you not be anxious as well?

I was released to an inpatient rehab facility, were I worked my tail off. It yielded nothing more than rippling pain around my abdomen. I had no movement, no feeling, but I tried... I AM trying. I have a very strong upper body and I muscled the para. bars. I tried, and the docs have the nerve to call it "conversions", well... they may has well call it "magical paralysis". At least it sounds more appealing.

That brings me to today, I have severe spasticity. Which WAS diagnosed. My reflexes are so hyper, that I have to be careful when doing transfers. My leg will randomly spaz and shoot straight out. I really do not know what to do with it, other than a deep massage. Sometimes it works and other times I roll around looking catatonic.

As of now, I am in a loaner wheelchair. A bulky invacare 9000sl. I am getting fitted for a TiLite ZS2 tomorrow.

I feel totally hopeless and confused. The doctors seem to be stumped and are not willing to even try. The longer they debate, the longer I have to live in uncertainty. Could it be a severe attack from my PPMS? Or could there be an sci without it showing up on the tests? My brain and spinal cord were deprived of adequate oxygenation for about an hour. Why are the docs not looking at that?

So, in the interim, I have to wait and roll around campus.

Is it normal to feel so detached from the world? So lost? I feel weird when someone asks why I am wheelchair bound, and I have to say, "It's being investigated". I mean not exactly that blunt, but you get my point.

Well, enjoy the novel. I am glad to have this support system!

[KayDub]

Welcome to the forum! My story isn't nearly like yours but in some ways somewhat similar. I'm 23 now and was 22 when I got sick. I didn't have any pre-existing health conditions, except for nerve damage caused by a joint fusion surgery in my right foot for degenerative cartilage after running college level track, but this summer in Australia, after a week of swelling and pain in my legs that was progressive over less than a week, I woke up unable to walk. Was rushed to hospital and spent weeks there being treated for various infections and severe blood clotting until I was medevaced to the states. My medical records didn't make it back with me so I spent three months being treated here for the wrong conditions until I was able to get in with a neurologist (long waiting list) who immediately diagnosed with me with transverse myelitis at T 10 and peripheral nerve damage from clotting and infections in my lower legs. I had some bowel and bladder function and had regained some use of my left leg after being completely paralysed in August but have since lost that and am back to no bowel or bladder function and being able to very minimally wiggle my left toes and have minimal motion of my left hamstrings and quad. Basically 99% bound to a wheelchair. I never got proper inpatient rehab and I live in Colorado so I've been incredibly lucky to start the process to be admitted to outpatient rehab at Craig. I should have been sent there for inpatient as soon as I got back but the doctors were confused about my condition because of my old injury. Oh well! I'm hoping to get better but I just had some updated MRIs and my doctor just called me a few hours ago to talk about the fairly severe damage he stills sees but he still wants me in PT. I'll keep trying no matter what.

I saw you're 18, so you're in undergrad? I'm in law school now, with a hydrology/geography bachelors, and I'd recommend really finding an area of study you're passionate about then applying to law school. I had a friend who did pre-law and poli sci with minors in econ and history (even staying an extra year to do another 6 month LSAT prep course worth thousands) and she still hasn't been accepted into a school. It's hard to get in and they are looking for unique students who can apply various backgrounds. I'm sure you'll do great though.

Good luck!

[Epiphany]

KayDub, on 27 October 2011 - 06:26 PM, said:

Welcome to the forum! My story isn't nearly like yours but in some ways somewhat similar. I'm 23 now and was 22 when I got sick. I didn't have any pre-existing health conditions, except for nerve damage caused by a joint fusion surgery in my right foot for degenerative cartilage after running college level track, but this summer in Australia, after a week of swelling and pain in my legs that was progressive over less than a week, I woke up unable to walk. Was rushed to hospital and spent weeks there being treated for various infections and severe blood clotting until I was medevaced to the states. My medical records didn't make it back with me so I spent three months being treated here for the wrong conditions until I was able to get in with a neurologist (long waiting list) who immediately diagnosed with me with transverse myelitis at T 10 and peripheral nerve damage from clotting and infections in my lower legs. I had some bowel and bladder function and had regained some use of my left leg after being completely paralysed in August but have since lost that and am back to no bowel or bladder function and being able to very minimally wiggle my left toes and have minimal motion of my left hamstrings and quad. Basically 99% bound to a wheelchair. I never got proper inpatient rehab and I live in Colorado so I've been incredibly lucky to start the process to be admitted to outpatient rehab at Craig. I should have been sent there for inpatient as soon as I got back but the doctors were confused about my condition because of my old injury. Oh well! I'm hoping to get better but I just had some updated MRIs and my doctor just called me a few hours ago to talk about the fairly severe damage he stills sees but he still wants me in PT. I'll keep trying no matter what.

I saw you're 18, so you're in undergrad? I'm in law school now, with a hydrology/geography bachelors, and I'd recommend really finding an area of study you're passionate about then applying to law school. I had a friend who did pre-law and poli sci with minors in econ and history (even staying an extra year to do another 6 month LSAT prep course worth thousands) and she still hasn't been accepted into a school. It's hard to get in and they are looking for unique students who can apply various backgrounds. I'm sure you'll do great though.

Good luck!

Wow! I am sorry that everything was lost in travel. That is bizzare, but at the same time it's not. If information being trasferred from one hospital to the next can be lost, cross-country must be a vacuum. I hope you are doing better. It is hard to go from being an athlete to "broken". But, with a lot of time, we will get back. At least to some activity. I noticed you are active in some sports. I cannot wait to be deemed stable, so that I can get started.

Yes, I am a philosophy pre-law major. It is going very well so far. I was a biology pre-med major, but considering the circumstances, I opted for pre-law. That is awesome that you are in law school! Is it fun? Which law school? If you don't mind telling. =) Thanks!

[KayDub]

Epiphany, on 27 October 2011 - 11:53 PM, said:

KayDub, on 27 October 2011 - 06:26 PM, said:

Welcome to the forum! My story isn't nearly like yours but in some ways somewhat similar. I'm 23 now and was 22 when I got sick. I didn't have any pre-existing health conditions, except for nerve damage caused by a joint fusion surgery in my right foot for degenerative cartilage after running college level track, but this summer in Australia, after a week of swelling and pain in my legs that was progressive over less than a week, I woke up unable to walk. Was rushed to hospital and spent weeks there being treated for various infections and severe blood clotting until I was medevaced to the states. My medical records didn't make it back with me so I spent three months being treated here for the wrong conditions until I was able to get in with a neurologist (long waiting list) who immediately diagnosed with me with transverse myelitis at T 10 and peripheral nerve damage from clotting and infections in my lower legs. I had some bowel and bladder function and had regained some use of my left leg after being completely paralysed in August but have since lost that and am back to no bowel or bladder function and being able to very minimally wiggle my left toes and have minimal motion of my left hamstrings and quad. Basically 99% bound to a wheelchair. I never got proper inpatient rehab and I live in Colorado so I've been incredibly lucky to start the process to be admitted to outpatient rehab at Craig. I should have been sent there for inpatient as soon as I got back but the doctors were confused about my condition because of my old injury. Oh well! I'm hoping to get better but I just had some updated MRIs and my doctor just called me a few hours ago to talk about the fairly severe damage he stills sees but he still wants me in PT. I'll keep trying no matter what.

I saw you're 18, so you're in undergrad? I'm in law school now, with a hydrology/geography bachelors, and I'd recommend really finding an area of study you're passionate about then applying to law school. I had a friend who did pre-law and poli sci with minors in econ and history (even staying an extra year to do another 6 month LSAT prep course worth thousands) and she still hasn't been accepted into a school. It's hard to get in and they are looking for unique students who can apply various backgrounds. I'm sure you'll do great though.

Good luck!

Wow! I am sorry that everything was lost in travel. That is bizzare, but at the same time it's not. If information being trasferred from one hospital to the next can be lost, cross-country must be a vacuum. I hope you are doing better. It is hard to go from being an athlete to "broken". But, with a lot of time, we will get back. At least to some activity. I noticed you are active in some sports. I cannot wait to be deemed stable, so that I can get started.

Yes, I am a philosophy pre-law major. It is going very well so far. I was a biology pre-med major, but considering the circumstances, I opted for pre-law. That is awesome that you are in law school! Is it fun? Which law school? If you don't mind telling. =) Thanks!

I know that's what I thought! At first I think my doctors in the states were skeptical, just like my doctors in Oz were (they thought I was pill seeking for a sprained ankle...). Then they did all the MRIs and EMGs and everything else and saw the damage in my spine and nerves and believed me. Can't make those tests up.

It is hard. I was training to get back on the US National track team (I'd been on the junior national team in high school) before I got sick and my job is a kid's ski instructor in my home town. Unfortunately I'm looking for another full time job within the resort because I'll only be able to teach a few kids that I taught last year, and really that's the most devastating thing to me. Well that and not being able to backpack or hike. Between my studies of watersheds and fire mitigation in burn sites and recreation, I really miss it. I've gotten into sled hockey because I played ice hockey starting when I was 3, and I monoski too, I was actually taught kids adaptive skiing and was certified with the sit skis as an AB ironically I suppose.

I'm at the University of Denver law school. I only applied there and to the University of Colorado. Do you know what schools you're interested in?

[Tetracyclone]

Epiphany,

So good of you to come out in the open. Your experience with your team of doctors is not unusual. Is there any way you might gather the resources to visit the Mayo Clinic. Their inter disciplinary cooperation is legendary.

It is not hard to image how damage could be done to your spine by intense seizure activity. It is a wee bit of a challenge you face, methinks...

[Epiphany]

KayDub, on 28 October 2011 - 12:55 AM, said:

Epiphany, on 27 October 2011 - 11:53 PM, said:

KayDub, on 27 October 2011 - 06:26 PM, said:

Welcome to the forum! My story isn't nearly like yours but in some ways somewhat similar. I'm 23 now and was 22 when I got sick. I didn't have any pre-existing health conditions, except for nerve damage caused by a joint fusion surgery in my right foot for degenerative cartilage after running college level track, but this summer in Australia, after a week of swelling and pain in my legs that was progressive over less than a week, I woke up unable to walk. Was rushed to hospital and spent weeks there being treated for various infections and severe blood clotting until I was medevaced to the states. My medical records didn't make it back with me so I spent three months being treated here for the wrong conditions until I was able to get in with a neurologist (long waiting list) who immediately diagnosed with me with transverse myelitis at T 10 and peripheral nerve damage from clotting and infections in my lower legs. I had some bowel and bladder function and had regained some use of my left leg after being completely paralysed in August but have since lost that and am back to no bowel or bladder function and being able to very minimally wiggle my left toes and have minimal motion of my left hamstrings and quad. Basically 99% bound to a wheelchair. I never got proper inpatient rehab and I live in Colorado so I've been incredibly lucky to start the process to be admitted to outpatient rehab at Craig. I should have been sent there for inpatient as soon as I got back but the doctors were confused about my condition because of my old injury. Oh well! I'm hoping to get better but I just had some updated MRIs and my doctor just called me a few hours ago to talk about the fairly severe damage he stills sees but he still wants me in PT. I'll keep trying no matter what.

I saw you're 18, so you're in undergrad? I'm in law school now, with a hydrology/geography bachelors, and I'd recommend really finding an area of study you're passionate about then applying to law school. I had a friend who did pre-law and poli sci with minors in econ and history (even staying an extra year to do another 6 month LSAT prep course worth thousands) and she still hasn't been accepted into a school. It's hard to get in and they are looking for unique students who can apply various backgrounds. I'm sure you'll do great though.

Good luck!

Wow! I am sorry that everything was lost in travel. That is bizzare, but at the same time it's not. If information being trasferred from one hospital to the next can be lost, cross-country must be a vacuum. I hope you are doing better. It is hard to go from being an athlete to "broken". But, with a lot of time, we will get back. At least to some activity. I noticed you are active in some sports. I cannot wait to be deemed stable, so that I can get started.

Yes, I am a philosophy pre-law major. It is going very well so far. I was a biology pre-med major, but considering the circumstances, I opted for pre-law. That is awesome that you are in law school! Is it fun? Which law school? If you don't mind telling. =) Thanks!

I know that's what I thought! At first I think my doctors in the states were skeptical, just like my doctors in Oz were (they thought I was pill seeking for a sprained ankle...). Then they did all the MRIs and EMGs and everything else and saw the damage in my spine and nerves and believed me. Can't make those tests up.

It is hard. I was training to get back on the US National track team (I'd been on the junior national team in high school) before I got sick and my job is a kid's ski instructor in my home town. Unfortunately I'm looking for another full time job within the resort because I'll only be able to teach a few kids that I taught last year, and really that's the most devastating thing to me. Well that and not being able to backpack or hike. Between my studies of watersheds and fire mitigation in burn sites and recreation, I really miss it. I've gotten into sled hockey because I played ice hockey starting when I was 3, and I monoski too, I was actually taught kids adaptive skiing and was certified with the sit skis as an AB ironically I suppose.

I'm at the University of Denver law school. I only applied there and to the University of Colorado. Do you know what schools you're interested in?

Wow! Looks like I am still only in the beginning. Um, not as of now, as I just switched my major. I am in PA, and I don't know of many law schools in PA. I am really interested in the Philly area, though.

Tetracyclone, on 28 October 2011 - 05:49 AM, said:

Epiphany,

So good of you to come out in the open. Your experience with your team of doctors is not unusual. Is there any way you might gather the resources to visit the Mayo Clinic. Their inter disciplinary cooperation is legendary.

It is not hard to image how damage could be done to your spine by intense seizure activity. It is a wee bit of a challenge you face, methinks...

I would really like to get into the Mayo clinic. My family and I actually thought about it. I understand it is possible, I just wish the doctors would too.

[wheeliebear75]

Epiphany, on 27 October 2011 - 05:35 PM, said:

Hello everyone, my name is Epiphany. I am an 18 year old female diagnosed with epilepsy, primary progressive multiple sclerosis, and "magic" paralysis. My story is a very confusing one so, I will try to keep it short and sweet.

"magic paralysis"

Why did I write this? Well, I am 18 years old, I just barely breached the doors of adulthood, and I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS). For one, this is entirely unusual and a rare occurance in a person as young as I am.

I also have Hereditary Intractible Epilepsy. Basically that means, I have a form of epilepsy that does not respond well to medications. I have to take a cocktail everyday and switch out what medications I am taking every three weeks. I am currently on Keppra, Neurontin, Dilantin, Tenormin, and Flexiril. I switch the Dilantin with Keppra every three weeks.

I still have not touched on the magic paralysis. Well, I will start with July 20th of this year. On July 20th, I went into a Grand Mal seizure. I did fall, but it was not a significant fall. Upon coming out of this 2 minute seizure, I went into another seizure that lasted 3 minutes. This is normal for me as my seizures come in small clusters of 3-5 at a time. About an hour later, I was able to get up and move around. However, my left foot seemed to drag. I did not think anything of it because my seizures frequently cause left-sided weakness. The weakness did not relent. About an hour later, my right foot started to drag. By this point, I was tripping and struggling to walk. I found myself over compensating for the drag. I immediantly scheduled an appointment with my podiatrist. (He had done two surgeries on my right ankle in the past couple months)

Over that weekend, my shins were in extreme pain, and the drag was getting worse. I could not pick up my feet or wiggle my toes. But I still had feeling. When I saw my pod., he said I had bilateral foot drop. However, he was stumped as to how I could have shown these symptoms in such a small time period. He ordered land and aquatic PT and for me to see my neurologist.

PT did not help with the movement, and my neuro ordered an MRI of my lumbar spine. As I was waiting for the MRI to be scheduled the weakness progressed up my legs to just above my knees and seemed to settle there. When the MRI came back, it showed a disk herniation of the L4-L5 region and a bulge at the S1-S2 region. I had a syrinx in my T-Spine and one in my C-Spine. I also have mild degenerative disk disease in my C4-C7 region.

So, on Aug. 19th, my neuro gave me a call and told me that I needed to go to the hospital immediately to have emergency surgery done on the disk herniation. About ten minutes later, a neurosurgeon gave me a call and said the same thing. Well, a day before, my GP gave me a medrol pack. Then upon arriving at the ER at this hospital, I was given IV steriods. When I was finally admitted and reevaluated for the surgery, the neurosurgeon came in and told me that it was no longer necessary. Bullcrap!

I'll speed up now. So, I was evaluated for some Townsend KAFOs and eventually fitted. All whilst pursuing a Phil. Pre-Law major. I was using forearm crutches at that point. On Sep. 26th, I went into severe status epilepticus (continuous seizures with no time to breath). My boyfriend came immediately to my dorm room when my roomie called him. I was transported to the local ER. There I was still seizing. (45 minutes-1 hour of seizing total). They loaded me with Adivan, which eventually stopped the seizures. I was placed under Crit. Care and transferred to the ICU.

Since the neuros, locally, were being totally indecisive, I refused their consultation. I was transferred to Pittsburgh for further treatment. There, I underwent a whole barrage of testing. All which showed little to nothing. My EEGs, like always, were abnormal. My Potassium, abnormal. My calcium, abnormal. I was also dubbed anemic and given iron. The Evoked Potential was abnormal. However, the EMG was normal. Yet, I was paralyzed from mid-stomach down.

Over the three weeks I was there, the reason for my T-12 paralysis remained a mystery. They stabbed my in the foot with needles, scraped me with keys, and hit me with hammers. Yet, it yielded nothing more than "conversions". Okay, I was diagnosed with anxiety. But if you were going to college with active epilepsy, magical drop foot, and interim PPMS; would you not be anxious as well?

I was released to an inpatient rehab facility, were I worked my tail off. It yielded nothing more than rippling pain around my abdomen. I had no movement, no feeling, but I tried... I AM trying. I have a very strong upper body and I muscled the para. bars. I tried, and the docs have the nerve to call it "conversions", well... they may has well call it "magical paralysis". At least it sounds more appealing.

That brings me to today, I have severe spasticity. Which WAS diagnosed. My reflexes are so hyper, that I have to be careful when doing transfers. My leg will randomly spaz and shoot straight out. I really do not know what to do with it, other than a deep massage. Sometimes it works and other times I roll around looking catatonic.

As of now, I am in a loaner wheelchair. A bulky invacare 9000sl. I am getting fitted for a TiLite ZS2 tomorrow.

I feel totally hopeless and confused. The doctors seem to be stumped and are not willing to even try. The longer they debate, the longer I have to live in uncertainty. Could it be a severe attack from my PPMS? Or could there be an sci without it showing up on the tests? My brain and spinal cord were deprived of adequate oxygenation for about an hour. Why are the docs not looking at that?

So, in the interim, I have to wait and roll around campus.

Is it normal to feel so detached from the world? So lost? I feel weird when someone asks why I am wheelchair bound, and I have to say, "It's being investigated". I mean not exactly that blunt, but you get my point.

Well, enjoy the novel. I am glad to have this support system!

I was 14 when I got hurt....I had a specific "diagnosis" but it was still a big "?!?!?!?". I think when I bumped into this site is when I finally stopped feeling so out of place.

I think Tetra has a good idea with getting in touch with the Mayo clinic since they're interdisciplinary investigative teams are so legendary if you can get the financial end taken care of they're a pretty good bet at a definitive ANSWER.

I remember from some of my own seizures that they always left me exhausted & in need of a good long nap. It wouldn't be out of the realm of possibility that the seizures themselves could cause some injury to the spine or some peripheral nerves leading from it.

I wish you all the best & keep coming back....this place has been a safe-haven for many including myself especially in those times when it feels as though we're most alone it's always comforting to come here & find out we're not.