Aa
my therapist believes me! says my sx are real neuro sx
I'm in limboland
Monday night was rough on me. I only got 1/2 an hour of sleep before my weird sx woke me up, some were new and/or in new spots and/or some on the other side (left). I felt like I was going threw a ringer. I got in a much needed nap just wished it was more then 3 hours. last night I got 12 hours of sleep and feel a little better. :)
electric shocks down my back, my right leg and arm, left big toe (new) and both sides of my face (left side is new). tingling, pin and needles were also in my face. my right ear was ringing very loud (new) for a day and half so far. my right calf was very stiff (new). When I woke up, I discovered I wet and defecated in my bed. I'm so embarrassed as I did this three more times that night. there wasn't a warning at all, I just went. I'm only 32, I shouldn't have these types of problems.
my eye ball hurts like H when it moves and the vision for that eye is getting poorer (dim, blurry/grainy-out of focus, double vision with 1 eye open, red is harder to see, jumpy vision). kinda feels like a knife in the back of my eyeball and being twisted at times. muscle spasms on R face mainly around eye. my right upper eye lid, its been twitching for the last 2 weeks and its driving me nuts. I was dragging my right leg, my foot didn't want to lift up for some reason.
for the last couple of months, my therapist had noticed increasing sx and this last Tuesday, when I saw my therapist (for PTSD) and she wanted to go threw all my weird sx as they are really getting to me. Asked if they were worse when my ptsd was acting up. I told her stress will make anything worse, but I've had these weird sx (listed below) when the ptsd was in of control and not a issue. even when the ptsd sx are flaring, I've never had these types of symptoms. I had ptsd for 10 yr this May, the weird sx for the last 1.4 yrs. the short story- my ex assaulted me then stalked for 5 years. he'd tried to kill me (and my kids if they happened to be in the way) more the 8 times.
If I remember right (1/2009), I 1st noticed my right forearm (just south of my elbow to 2 or 3 inches up. the next day it spread all the way to my pinky and 1/2 my ring (pinky side) finger) that lost feeling. for the next 10-11 months it was numb, itchy (for no reason) electric shocks, tearing-like pain when I stretched out/moved my arm, muscle spasms. I had a NCT and the one the put needles in muscle, passed.
my right eye was next, started about 2 weeks after my right arm. I lost my side vision for my right eye only for about 45-60 minutes. it went green then grayed out to black. I could still think straight, talk, move/feel all limbs and body. my heart was racing after my side vision went out- I think this was the oh sh!t response. I see white flashes, black spots, part of my center and bottom right vision isn't clear. dim, jumpy, double-with 1 R eye open, sometimes too bright (for one eye), pain with movement and pain on back and sides of eyeball. yesterday my pupils weren't the same size for most of the day according to my daughter. they're normal now. needles to say my R eye is a mess. regular eye doc said my eyeballs were very healthy-thought problem was in optic nerve. was refereed to other and was told eye migraine which I find hard to believe
heat-intolerance is a major sx (1st noticed it 3 years ago) as all my sx are worse for at least a couple of hours after I cool down. right now I can start to feel this sx at 75F and they show at 80F. last summer, my right leg got stuck? (no sure what term to use here). I was walking outside (trying to go inside were the AC was on) and was overheating a little. I couldn't lift my right leg for some reason. I ended up dragging it to get inside. Hot showers are a no no now days. I forgot this yesterday and almost fell a couple times due to sudden dizziness and right leg weakness (thank goodness I have a bar to hold on to -and my left arm still works- and a seat)
using wrong words. like asking for a paperclip when I'm pointing at a close pin, or "I'll get dinner out of the table and put it on the dog." that still doesn't make sense to me-my dog is outside most of the time and when we eat.
a weird draining fatigue, doesn't matter if I get a good night sleep. its always in the afternoon 1-4 pm or when I get over heated. its kinda like all my energy has been drained and I can't think and my memory isn't working too well. my spelling is worse then my kids at times (I'm glad my puter has spell check)
muscle spasms, a buzzing, tingling, pins and needles on R side. vibrating (cell phone like) on R leg. when pushing buttons, I have to do it multiple times cause I'm not pushing hard enough. my touch says it is, but it's not. electric shocks/jolts on my face (mainly right side). 1/2 my tongue gets jolts or goes numb or tingling. my esophagus get a burning feeling
dropping things in my right hand for no reason or warning.
loss of coronation
sometimes if someone run there finger on the bottom of my right foot, my toes go up; my left foot toes goes down. Down is normal right?
my reflexes for my right leg are mainly either dead or hyper, they are barely normal now. but on a good note, my PCP reflexes are very good to moving out of the way when he checks my right leg. I'd feel terrible if I hit him as he believes me when I say something is wrong and it hard to find a caring and compassionate doctor who will listen
vertigo; the world mainly seems to spin or to suddenly drop beneath me. my balance is off. I'm either bouncing off of walls or have a heavy lean to the right. steps are hard to judge with my sight and I can't always feel my right foot.
my emotions are scattered, one second I'm normal then start crying or laughing or some other emotion for no reason. I'll even cry during commercials-this isn't normal for me.
bladder and bowel problems. about 7 years ago, I had similar problems with my bladder (for 6 months-then disappeared) my pcp didn't find out why. I get the very loud alarm that I have to go now, but then I have to wait when I'm ready. the bowel problem started about a month ago.
I'm probably forgetting something
my therapist asked me if I had gone to neuro for these real neurological sx, I told her my PCP has refereed me about 7 or 8 weeks ago but I'm still waiting for the ok. I'm on my states health plan. she said she'd call them and try to get them to hurry up and let her know when I go.
well I seemed to write yet another book, sorry about that
Monday night was rough on me. I only got 1/2 an hour of sleep before my weird sx woke me up, some were new and/or in new spots and/or some on the other side (left). I felt like I was going threw a ringer. I got in a much needed nap just wished it was more then 3 hours. last night I got 12 hours of sleep and feel a little better. :)
electric shocks down my back, my right leg and arm, left big toe (new) and both sides of my face (left side is new). tingling, pin and needles were also in my face. my right ear was ringing very loud (new) for a day and half so far. my right calf was very stiff (new). When I woke up, I discovered I wet and defecated in my bed. I'm so embarrassed as I did this three more times that night. there wasn't a warning at all, I just went. I'm only 32, I shouldn't have these types of problems.
my eye ball hurts like H when it moves and the vision for that eye is getting poorer (dim, blurry/grainy-out of focus, double vision with 1 eye open, red is harder to see, jumpy vision). kinda feels like a knife in the back of my eyeball and being twisted at times. muscle spasms on R face mainly around eye. my right upper eye lid, its been twitching for the last 2 weeks and its driving me nuts. I was dragging my right leg, my foot didn't want to lift up for some reason.
for the last couple of months, my therapist had noticed increasing sx and this last Tuesday, when I saw my therapist (for PTSD) and she wanted to go threw all my weird sx as they are really getting to me. Asked if they were worse when my ptsd was acting up. I told her stress will make anything worse, but I've had these weird sx (listed below) when the ptsd was in of control and not a issue. even when the ptsd sx are flaring, I've never had these types of symptoms. I had ptsd for 10 yr this May, the weird sx for the last 1.4 yrs. the short story- my ex assaulted me then stalked for 5 years. he'd tried to kill me (and my kids if they happened to be in the way) more the 8 times.
If I remember right (1/2009), I 1st noticed my right forearm (just south of my elbow to 2 or 3 inches up. the next day it spread all the way to my pinky and 1/2 my ring (pinky side) finger) that lost feeling. for the next 10-11 months it was numb, itchy (for no reason) electric shocks, tearing-like pain when I stretched out/moved my arm, muscle spasms. I had a NCT and the one the put needles in muscle, passed.
my right eye was next, started about 2 weeks after my right arm. I lost my side vision for my right eye only for about 45-60 minutes. it went green then grayed out to black. I could still think straight, talk, move/feel all limbs and body. my heart was racing after my side vision went out- I think this was the oh sh!t response. I see white flashes, black spots, part of my center and bottom right vision isn't clear. dim, jumpy, double-with 1 R eye open, sometimes too bright (for one eye), pain with movement and pain on back and sides of eyeball. yesterday my pupils weren't the same size for most of the day according to my daughter. they're normal now. needles to say my R eye is a mess. regular eye doc said my eyeballs were very healthy-thought problem was in optic nerve. was refereed to other and was told eye migraine which I find hard to believe
heat-intolerance is a major sx (1st noticed it 3 years ago) as all my sx are worse for at least a couple of hours after I cool down. right now I can start to feel this sx at 75F and they show at 80F. last summer, my right leg got stuck? (no sure what term to use here). I was walking outside (trying to go inside were the AC was on) and was overheating a little. I couldn't lift my right leg for some reason. I ended up dragging it to get inside. Hot showers are a no no now days. I forgot this yesterday and almost fell a couple times due to sudden dizziness and right leg weakness (thank goodness I have a bar to hold on to -and my left arm still works- and a seat)
using wrong words. like asking for a paperclip when I'm pointing at a close pin, or "I'll get dinner out of the table and put it on the dog." that still doesn't make sense to me-my dog is outside most of the time and when we eat.
a weird draining fatigue, doesn't matter if I get a good night sleep. its always in the afternoon 1-4 pm or when I get over heated. its kinda like all my energy has been drained and I can't think and my memory isn't working too well. my spelling is worse then my kids at times (I'm glad my puter has spell check)
muscle spasms, a buzzing, tingling, pins and needles on R side. vibrating (cell phone like) on R leg. when pushing buttons, I have to do it multiple times cause I'm not pushing hard enough. my touch says it is, but it's not. electric shocks/jolts on my face (mainly right side). 1/2 my tongue gets jolts or goes numb or tingling. my esophagus get a burning feeling
dropping things in my right hand for no reason or warning.
loss of coronation
sometimes if someone run there finger on the bottom of my right foot, my toes go up; my left foot toes goes down. Down is normal right?
my reflexes for my right leg are mainly either dead or hyper, they are barely normal now. but on a good note, my PCP reflexes are very good to moving out of the way when he checks my right leg. I'd feel terrible if I hit him as he believes me when I say something is wrong and it hard to find a caring and compassionate doctor who will listen
vertigo; the world mainly seems to spin or to suddenly drop beneath me. my balance is off. I'm either bouncing off of walls or have a heavy lean to the right. steps are hard to judge with my sight and I can't always feel my right foot.
my emotions are scattered, one second I'm normal then start crying or laughing or some other emotion for no reason. I'll even cry during commercials-this isn't normal for me.
bladder and bowel problems. about 7 years ago, I had similar problems with my bladder (for 6 months-then disappeared) my pcp didn't find out why. I get the very loud alarm that I have to go now, but then I have to wait when I'm ready. the bowel problem started about a month ago.
I'm probably forgetting something
my therapist asked me if I had gone to neuro for these real neurological sx, I told her my PCP has refereed me about 7 or 8 weeks ago but I'm still waiting for the ok. I'm on my states health plan. she said she'd call them and try to get them to hurry up and let her know when I go.
well I seemed to write yet another book, sorry about that
I was interested in your eye problem,not that the rest of ur problems arnt important,because you sound a lot like myself. ( ALOT ) ! The way you describe ur eye pain is to the point and again I just went through this very same eyepain,and I MEAN THE SAME ! If you are haveing headaches that just dont go away,dont ignor that eye pain mine turned out to be a pseudotumor,dont now if you know anything about ( IIH ) thats another term used,but it is with concern only because I went through this just 2 1/2 mths. ago.my headaches would stay for ever 15 to 26 days, only to go away slightly to come back w/ full force.I had a MRI A CT, a circle of willis,and then the spinal tap they the hospital PER the eye dr that came in to see me DX me thank god ! the spinal they took 30 cc of fluid of my brain releaving some pressure and now im on meds 4 it ... I wont go on but i hope you get some answers soon Good Luck.. xx mommies4
I got a call yesterday, my neuro had a medical emergency and will most like require surgery. I got bumped down 2 weeks to May 26.
I've been in limboland with these weird sx for over a year and a half.
I've been in limboland with these weird sx for over a year and a half.
Hey Phoenix, good luck with the neuro tomorrow. Let us know how you get on.
You may find it useful to read http://www.medhelp.org/health_pages/Multiple%20Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36 (parts 1 and 2)
sammxxx
Tell us how long you've been in Limboland:
http://www.medhelp.org/posts/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/How-long-have-you-been-in-limboland-without-a-satisfactory--conclusive-dx/show/1236589
You may find it useful to read http://www.medhelp.org/health_pages/Multiple%20Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36 (parts 1 and 2)
sammxxx
Tell us how long you've been in Limboland:
http://www.medhelp.org/posts/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/How-long-have-you-been-in-limboland-without-a-satisfactory--conclusive-dx/show/1236589
Update
I have an appointment with a neuro this Thursday A.M.
I have an appointment with a neuro this Thursday A.M.
You have run the gauntlet of tests and docs...It is so frustrating.....
But just because your tests are normal does not mean your symptoms are not real.
Please have faith in yourself and DO NOT GIVE UP!!!!!
Most of us on here have been told at one time or another that it is all in our heads....When you hear that you actually start to have doubt in yourself. Dont ever doubt yourself!
Most of my weird ness has been blamed on migraines and migraine varients(Hemiplegic,Acephalgic) ..Like you that does not explain all my sx....
I am making one more attempt and seeing a new Rheumy on monday....My eye docs thinking Sjogrens.....
Please Take Care, Theresa.....
But just because your tests are normal does not mean your symptoms are not real.
Please have faith in yourself and DO NOT GIVE UP!!!!!
Most of us on here have been told at one time or another that it is all in our heads....When you hear that you actually start to have doubt in yourself. Dont ever doubt yourself!
Most of my weird ness has been blamed on migraines and migraine varients(Hemiplegic,Acephalgic) ..Like you that does not explain all my sx....
I am making one more attempt and seeing a new Rheumy on monday....My eye docs thinking Sjogrens.....
Please Take Care, Theresa.....
correction not 4/4/10 it was 3/4/10
the last time I was in limboland (2000-2004), I saw a lot of doctors and most of them said it was in my head. My PCP and a Rheumatologist were the only doctors that believed me. It was turning this period of time when I had a MRI and a cat scan on my brain (don't know how strong), which was clear. I had a spinal tab at the ER , he said he want to look for meningitis even though I wasn't complaining of a stiff neck and didn't have a fever, just a bad headache with a lot of pressure in my head and behind my eyes. (I would recommend not letting a ER doc do these; that doc poked me 6 times and I got the worse spinal headache,2 weeks, in my life- the thought of one still send a chill down my spine). the ER doctor was acting like I was a druggie. I guess that MRI and spinal tap can be used as a base line. but these were done years before my current symptoms.
my current PCP kept trying to figure out what was wrong with me. All my tests from this period of time were negative or inconclusive. The Rheumatologist dx me with fibro on 5/16/04. but the medications for it didn't help, so I lost a little more faith in doctors. anytime I had a new sx it was blamed on the fibro(I'm guilty of this too). my current DX conditions: FMS(?), IBS(?), RLS(?), PTSD, OA (left knee), Plantar Fasciitis (right foot), and rotator cuff problem-right arm.
But there came the day these weird sx got my undivided attention and this time fibro couldn't be blamed. fibro couldn't take part of my vision and I'd never experienced numbness with it, so I went to my PCP (granted later then I should of). I told him what was going on (R forearm not sure if I mentioned my R eye). I was thinking pitched nerve like CTS or something like it. My doc told my to pay attention to my arm and see what sets it off, when I go to bed keep my arms straight, and I’ll see you in 2 weeks.
2 weeks later, my right arm is still numb. I noticed heat seems to make what ever this is worse; I feel dizzy/spinning/spacey. I remember feeling this the last 3 summer but it wasn’t as severe; once I cooled down it when away. 2 summers ago I felt a little worse then the summer before. last summer, I was totally disabled. I stayed inside with the AC on all summer when it was hot outside. I’m starting to notice pins and needles and numbness in my R foot and leg. My PCP ordered a x-ray on my neck and a big blood draw (9 viles).
When my blood tests results came back everything was normal, except D3 and B12; they were in the low range of normal. I got 2 B12 shots within 2 months and increased my D3 to 2000 iu a day, but the weird sx stayed and got worse and some new one come into play. On 7/31/09 my B12 was at >2100.
the blood test had WBC, Cholesterol, HDL,Triglycerides, LDL, ANA, Sed Rate,CBC, CRP, ACE, Vitamin B12, RPR, Lyme Disease Test, TSH T3, T4-, Anti-SS-A / -SS-B, Anti-dsDNA, C3, C4-, Anti-histone, Acetylcholine receptor antibody, HIV and other STDs (my ex was unfaithful and I insisted since it was roughly 10 yrs).
When I saw my PCP to get the results and a update on my condition, I asked for my physical. this is the 1st and only time I've asked for one. my doc was shocked as he usually has to insist I get one. everything but my right side was normal; my right side has something neurological going on. He ordered a NCT and the one the put needles in muscle (sorry I don't remember what this test is called), the nerves in my R arm passed. but by the time I got the test about 6-8 weeks later, I could feel pressure so what ever was going it seemed to heal a little. I'm not sure but this could of effected the test.
my R right eye was the next riddle. I remember my PCP telling me, he thinks he'll get the answer threw my eye (for some reason that stuck). I saw a regular eye doctor, who listened/asked questions to all my sx (not just the eye but all of them). he was very concerned about my heat intolerance and my eyes not agreeing on what shade of red I was looking at. I don't remember all the tests I had but I had 3.5-4 hours worth. This doc did a lot of tests. I remember my blood pressure was taken-it was normal, vision field test-R eye failed, L passed; I retook this test 3 days later and my R eye barely passed. Visual Acuity Tests, Color Vision-barely passed with R eye, Pupillary Response, the follow my finger test, Cover Test, there was a test where air was shot to my eye-both eyes passed, a picture of the back of my eyes-they're both healthy, Ophthalmoscopy, I'm probably forgetting something. The eye doctor told me my eyeballs were very healthy, but thought the problem was in my optic nerve. he said he'd refer me to a neuro-eye doc (sorry I'm not good at doc terms).
When I saw my PCP, he found out that doctor didn't do the paper work so he did it himself. The neuro-eye doc had my eyes dilated and looked into my eyes. the doc only wanted to hear about eye sx only. he dx me eye migraines, but really how does he explain all the other sx-quiet simple ignore them. My PCP wanted to send me to a neuro, but all my sx disappeared in reverse order once the summer heat left. so we agreed if/when these sx returned, he'd send me to a neuro.
when the sx returned (in the same order the came except for the side blindness)about 6 weeks later, more blood test (every thing normal except D3 and B12-low end of normal) and a referral to a nuero (1/15/10). I saw my PCP on 4/4/10 and let him now I had not seen the nuero and he was pissed. I just relies how long its been 10 weeks OMG
my current PCP kept trying to figure out what was wrong with me. All my tests from this period of time were negative or inconclusive. The Rheumatologist dx me with fibro on 5/16/04. but the medications for it didn't help, so I lost a little more faith in doctors. anytime I had a new sx it was blamed on the fibro(I'm guilty of this too). my current DX conditions: FMS(?), IBS(?), RLS(?), PTSD, OA (left knee), Plantar Fasciitis (right foot), and rotator cuff problem-right arm.
But there came the day these weird sx got my undivided attention and this time fibro couldn't be blamed. fibro couldn't take part of my vision and I'd never experienced numbness with it, so I went to my PCP (granted later then I should of). I told him what was going on (R forearm not sure if I mentioned my R eye). I was thinking pitched nerve like CTS or something like it. My doc told my to pay attention to my arm and see what sets it off, when I go to bed keep my arms straight, and I’ll see you in 2 weeks.
2 weeks later, my right arm is still numb. I noticed heat seems to make what ever this is worse; I feel dizzy/spinning/spacey. I remember feeling this the last 3 summer but it wasn’t as severe; once I cooled down it when away. 2 summers ago I felt a little worse then the summer before. last summer, I was totally disabled. I stayed inside with the AC on all summer when it was hot outside. I’m starting to notice pins and needles and numbness in my R foot and leg. My PCP ordered a x-ray on my neck and a big blood draw (9 viles).
When my blood tests results came back everything was normal, except D3 and B12; they were in the low range of normal. I got 2 B12 shots within 2 months and increased my D3 to 2000 iu a day, but the weird sx stayed and got worse and some new one come into play. On 7/31/09 my B12 was at >2100.
the blood test had WBC, Cholesterol, HDL,Triglycerides, LDL, ANA, Sed Rate,CBC, CRP, ACE, Vitamin B12, RPR, Lyme Disease Test, TSH T3, T4-, Anti-SS-A / -SS-B, Anti-dsDNA, C3, C4-, Anti-histone, Acetylcholine receptor antibody, HIV and other STDs (my ex was unfaithful and I insisted since it was roughly 10 yrs).
When I saw my PCP to get the results and a update on my condition, I asked for my physical. this is the 1st and only time I've asked for one. my doc was shocked as he usually has to insist I get one. everything but my right side was normal; my right side has something neurological going on. He ordered a NCT and the one the put needles in muscle (sorry I don't remember what this test is called), the nerves in my R arm passed. but by the time I got the test about 6-8 weeks later, I could feel pressure so what ever was going it seemed to heal a little. I'm not sure but this could of effected the test.
my R right eye was the next riddle. I remember my PCP telling me, he thinks he'll get the answer threw my eye (for some reason that stuck). I saw a regular eye doctor, who listened/asked questions to all my sx (not just the eye but all of them). he was very concerned about my heat intolerance and my eyes not agreeing on what shade of red I was looking at. I don't remember all the tests I had but I had 3.5-4 hours worth. This doc did a lot of tests. I remember my blood pressure was taken-it was normal, vision field test-R eye failed, L passed; I retook this test 3 days later and my R eye barely passed. Visual Acuity Tests, Color Vision-barely passed with R eye, Pupillary Response, the follow my finger test, Cover Test, there was a test where air was shot to my eye-both eyes passed, a picture of the back of my eyes-they're both healthy, Ophthalmoscopy, I'm probably forgetting something. The eye doctor told me my eyeballs were very healthy, but thought the problem was in my optic nerve. he said he'd refer me to a neuro-eye doc (sorry I'm not good at doc terms).
When I saw my PCP, he found out that doctor didn't do the paper work so he did it himself. The neuro-eye doc had my eyes dilated and looked into my eyes. the doc only wanted to hear about eye sx only. he dx me eye migraines, but really how does he explain all the other sx-quiet simple ignore them. My PCP wanted to send me to a neuro, but all my sx disappeared in reverse order once the summer heat left. so we agreed if/when these sx returned, he'd send me to a neuro.
when the sx returned (in the same order the came except for the side blindness)about 6 weeks later, more blood test (every thing normal except D3 and B12-low end of normal) and a referral to a nuero (1/15/10). I saw my PCP on 4/4/10 and let him now I had not seen the nuero and he was pissed. I just relies how long its been 10 weeks OMG
Hi,
I am soooo sorry that you are having all these frightening symptoms...Most of us on here are all too familure with what you describe myself included...
I have a few questions for you.....
What types of doctors have you seen ? Rheumatologist?
What tests have you had? Lumbar Puncture,EMG,EVP ,Blood tests,MRI?
Your symptoms seem way beyond your PCP . Alot of us have learned that you must be persistant.You have to advocate for yourself. Please feel free to ask if you need any help in what direction to take. I am not a doctor but I have been where you are.I may not have all the answers but I have definatly learned what not to do......
Please Take Care, Theresa
I am soooo sorry that you are having all these frightening symptoms...Most of us on here are all too familure with what you describe myself included...
I have a few questions for you.....
What types of doctors have you seen ? Rheumatologist?
What tests have you had? Lumbar Puncture,EMG,EVP ,Blood tests,MRI?
Your symptoms seem way beyond your PCP . Alot of us have learned that you must be persistant.You have to advocate for yourself. Please feel free to ask if you need any help in what direction to take. I am not a doctor but I have been where you are.I may not have all the answers but I have definatly learned what not to do......
Please Take Care, Theresa
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