13 replies to this topic

[rue2you]

Short summary:

All of 2008 - suffered from neuro symptoms. Loss of balance, dizziness, twitching under my skin all over, terrible "electric" shocks in my legs, severe pain in legs, blurred vision at times, etc.
Saw a neurologist and she told me she was 99% sure that I had Multiple Sclerosis - one problem though - they can't find any lesions in my brain or spine and I have had several MRI's.

October of '08 - I got pregnant

March of '09 - on the 11th, I was terribly sick. I was in so much pain in my back and legs, I could not stand for my husband to move me or hardly touch me. I slept on and off and really hardly even remember the day. I was terribly weak. When I woke up on the 12th, I had no feeling or movement from the waist down.

I got a new neurologist (because of insurance issues) and he does not think it is MS because of no lesions but doesn't know what happened and has to wait until I have baby to run more tests. During pregnancy I was put on heparin shots twice a day and neurologically - I felt perfect!! (except for being paralyzed).

July of '09 - I had the baby and had to have a C-section because he flipped breech at the last minute. My body did not do well with any of the pain medication and the anesthesiologist said that he emptied the medicine cabinet on me. I was told (although I do not remember it because they gave me some kind of medicine to forget it all) that I moaned and cried that it hurt very deep inside me the whole time.
I have never felt the incision and the pain that I had after the C-section was deep inside my left side like a hot poker was being jammed in me. Other than that, I have had no pain.
A week after the C-section, I had a hematoma which blew out the right side of the incision and left a deep wound that has to be changed twice a day and now, 3 weeks later is doing very good. It has never given me an ounce of pain except when they packed it real deep the first week and then I would feel something on the left side (opposite of where they were digging).
I had another MRI and nothing is showing up so everyone is stumped on what happened.
When the hematoma ruptured, they took me off the blood thinner to control the bleeding. So, I have not been on that for the last 3 weeks.
2 weeks ago, my heart rate started acting up. It is low (50's) and jumps around like crazy. for the last week and a half, I was having really bad headaches that would come and go. Sunday, I woke up and the room was spinning everywhere and would not stop. When I closed my eyes, I would still feel like someone had me by ankles and I was being spun around and around. All day Sunday, if I even moved my eyeballs, everything would spin again. It was HORRIBLE!! We called the neuron on call and he said it was vertigo.
After March however, I was afraid maybe I was trying to have a stroke or maybe the paralysis was going to move up. I just didn't know. So, my hubby and I decided to go ahead and take a heparin shot (I had some left over) and see if that would help. It did! My heart rate came up and I was feeling better. I took both shots yesterday and my heart rate has been higher than it has been in 2 weeks. Also, the dizziness is gone completely. I still feel like my head gets a little tingly sometimes and feels a little weird but at least the room is holding still.
So, what do you all think? I see my dr. today at 3:30 and my neurologist tomorrow morning at 9:45. I know that sometimes being the patient we learn more and I thought you all might have some insight.

[Yasko]

rue2you, on Aug 25 2009, 09:18 AM, said:

Short summary:

All of 2008 - suffered from neuro symptoms. Loss of balance, dizziness, twitching under my skin all over, terrible "electric" shocks in my legs, severe pain in legs, blurred vision at times, etc.
Saw a neurologist and she told me she was 99% sure that I had Multiple Sclerosis - one problem though - they can't find any lesions in my brain or spine and I have had several MRI's.

October of '08 - I got pregnant

March of '09 - on the 11th, I was terribly sick. I was in so much pain in my back and legs, I could not stand for my husband to move me or hardly touch me. I slept on and off and really hardly even remember the day. I was terribly weak. When I woke up on the 12th, I had no feeling or movement from the waist down.

I got a new neurologist (because of insurance issues) and he does not think it is MS because of no lesions but doesn't know what happened and has to wait until I have baby to run more tests. During pregnancy I was put on heparin shots twice a day and neurologically - I felt perfect!! (except for being paralyzed).

July of '09 - I had the baby and had to have a C-section because he flipped breech at the last minute. My body did not do well with any of the pain medication and the anesthesiologist said that he emptied the medicine cabinet on me. I was told (although I do not remember it because they gave me some kind of medicine to forget it all) that I moaned and cried that it hurt very deep inside me the whole time.
I have never felt the incision and the pain that I had after the C-section was deep inside my left side like a hot poker was being jammed in me. Other than that, I have had no pain.
A week after the C-section, I had a hematoma which blew out the right side of the incision and left a deep wound that has to be changed twice a day and now, 3 weeks later is doing very good. It has never given me an ounce of pain except when they packed it real deep the first week and then I would feel something on the left side (opposite of where they were digging).
I had another MRI and nothing is showing up so everyone is stumped on what happened.
When the hematoma ruptured, they took me off the blood thinner to control the bleeding. So, I have not been on that for the last 3 weeks.
2 weeks ago, my heart rate started acting up. It is low (50's) and jumps around like crazy. for the last week and a half, I was having really bad headaches that would come and go. Sunday, I woke up and the room was spinning everywhere and would not stop. When I closed my eyes, I would still feel like someone had me by ankles and I was being spun around and around. All day Sunday, if I even moved my eyeballs, everything would spin again. It was HORRIBLE!! We called the neuron on call and he said it was vertigo.
After March however, I was afraid maybe I was trying to have a stroke or maybe the paralysis was going to move up. I just didn't know. So, my hubby and I decided to go ahead and take a heparin shot (I had some left over) and see if that would help. It did! My heart rate came up and I was feeling better. I took both shots yesterday and my heart rate has been higher than it has been in 2 weeks. Also, the dizziness is gone completely. I still feel like my head gets a little tingly sometimes and feels a little weird but at least the room is holding still.
So, what do you all think? I see my dr. today at 3:30 and my neurologist tomorrow morning at 9:45. I know that sometimes being the patient we learn more and I thought you all might have some insight.

I'm not sure what is going on but please be carefully with heparin shots. It could cause internal bleeding!
My only advice to you is to verify with your Doctor about taking heparin shots. Good Luck.

Edited by Yasko, 25 August 2009 - 05:31 PM.

[rue2you]

Thank you Yasko. I will talk to him today.

[Illinois Boy]

If I became paralyzed for no apparent reason, I would see as many doctors as it took till one figured it out....

No wonder I hate doctors, to few good ones to b found.....

Good Luck,
Jim

[qbounce]

Fortunately, most here KNOW what happened to them, and it's usually sudden. A slow progression of an unknown matter is MUCH more obscure (as you already know) to peg. I feel for you, and hope you find a doctor who can figure it out.

Edited by qbounce, 25 August 2009 - 09:25 PM.

[Ratticis]

I knew what happened to me 3 months before the doctors would believe it was possible, then they still try to attribute it to something else. Of course by then it was too damn late to do anything about it. Bastards!

Anyway, rue, you wouldn't by any chance be on medication for epilepsy, would you? After my second surgery I started experiencing the same room spinning sort of feeling. Turns out they had 3 times the amount of dylantin in my body that there was supposed to be, which is what my dad said it sounded like to him. The doctor figured this was good news. My dad said it's damn scary that I was in there care and the're too inept to figure out a simple thing like that but a fat farm boy with a grade 9 education can figure it out . . . Again

[rue2you]

No, I have not been on any medication. I was even off the pain meds from the C-section. Nothing but a Tylenol every now and then for being sore (from laying in the bed recovering!)

[moondrops]

Hello! I really hope your doctor has been able to help you. It kind of sounds like a stroke to me. Are you on any kind of birth control?
I had a stroke when I started bc after habing my first daughter at age 18. It is very difficult to diagnois.
Please keep us updated. I am worried about you!
Catherine
Mom/caregiver of Amber age 25 injury level C5-6 complete.

quote name='rue2you' date='Aug 25 2009, 11:18 AM' post='126488']
Short summary:

All of 2008 - suffered from neuro symptoms. Loss of balance, dizziness, twitching under my skin all over, terrible "electric" shocks in my legs, severe pain in legs, blurred vision at times, etc.
Saw a neurologist and she told me she was 99% sure that I had Multiple Sclerosis - one problem though - they can't find any lesions in my brain or spine and I have had several MRI's.

October of '08 - I got pregnant

March of '09 - on the 11th, I was terribly sick. I was in so much pain in my back and legs, I could not stand for my husband to move me or hardly touch me. I slept on and off and really hardly even remember the day. I was terribly weak. When I woke up on the 12th, I had no feeling or movement from the waist down.

I got a new neurologist (because of insurance issues) and he does not think it is MS because of no lesions but doesn't know what happened and has to wait until I have baby to run more tests. During pregnancy I was put on heparin shots twice a day and neurologically - I felt perfect!! (except for being paralyzed).

July of '09 - I had the baby and had to have a C-section because he flipped breech at the last minute. My body did not do well with any of the pain medication and the anesthesiologist said that he emptied the medicine cabinet on me. I was told (although I do not remember it because they gave me some kind of medicine to forget it all) that I moaned and cried that it hurt very deep inside me the whole time.
I have never felt the incision and the pain that I had after the C-section was deep inside my left side like a hot poker was being jammed in me. Other than that, I have had no pain.
A week after the C-section, I had a hematoma which blew out the right side of the incision and left a deep wound that has to be changed twice a day and now, 3 weeks later is doing very good. It has never given me an ounce of pain except when they packed it real deep the first week and then I would feel something on the left side (opposite of where they were digging).
I had another MRI and nothing is showing up so everyone is stumped on what happened.
When the hematoma ruptured, they took me off the blood thinner to control the bleeding. So, I have not been on that for the last 3 weeks.
2 weeks ago, my heart rate started acting up. It is low (50's) and jumps around like crazy. for the last week and a half, I was having really bad headaches that would come and go. Sunday, I woke up and the room was spinning everywhere and would not stop. When I closed my eyes, I would still feel like someone had me by ankles and I was being spun around and around. All day Sunday, if I even moved my eyeballs, everything would spin again. It was HORRIBLE!! We called the neuron on call and he said it was vertigo.
After March however, I was afraid maybe I was trying to have a stroke or maybe the paralysis was going to move up. I just didn't know. So, my hubby and I decided to go ahead and take a heparin shot (I had some left over) and see if that would help. It did! My heart rate came up and I was feeling better. I took both shots yesterday and my heart rate has been higher than it has been in 2 weeks. Also, the dizziness is gone completely. I still feel like my head gets a little tingly sometimes and feels a little weird but at least the room is holding still.
So, what do you all think? I see my dr. today at 3:30 and my neurologist tomorrow morning at 9:45. I know that sometimes being the patient we learn more and I thought you all might have some insight.
[/quote]

[SnoFl]

Rue,
during my first pregnancy the doctors had me use heparin due to a blood clot in my leg... they thought it was because i used birth control pills for a couple of years before becoming pregnant (hormone problem). anyway, i didn't experience any of the symptoms you mentioned in your post.

Please let us know how your doctor visits go... you are in my thoughts.

Warm hug headed your way

-Sno

[Ratticis]

I forgot to mention, congratulations on the new baby, and good luck with everything!

[wheeliebear75]

Ya know I think I'm somehow "glad" that I am in the sudden accident category.......no mystery just gravity at a very bad time. I wish you all the luck but have no clue as for advice.

[rue2you]

Thank you all so much for your kind replies. After seeing my family doctor yesterday and my neurologist today, they are both in agreement that they do not know. They said that I am beyond their medical knowledge so they are sending me to Cleveland Clinic here in Ohio. Hopefully, they will be able to find out what is going on. At this point, I just about begin to panic over a toothache and it is hard not to worry about what might happen next.

Oh, by the way, I have never taken birth control - I have 6 kids remember!

[Ratticis]

at least they have enough seed to admidt they don't know. Problem I had was 10 different doctors arguing that they know best when none of had a clue.

[rue2you]

Ratticus,
That's the way I feel too. I would much rather a doctor tell me he doesn't know than to act like he does.