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Neuro exam results- all, please help? (Quix?)
Here is my neuro exam summary & all positive reports so far. Please tell me why I should keep going, and not go bury my head in the sand.
Cognitive-mildly impaired
Fundus exam- temporlallor o.n. (spelling is weird?)
Red desat. –positive
CNS.
EOMIE: (something written here, can’t read it)
Head tilt: positive, mild to the left
Pursuit: (can’t read this either)
Shrug: decreased, weakness on the left
Dysarthria: mild
Dysphagia: positive
Tremor: positive-arms
Pseudo-athetosis: mild
Note:Pseudoathetosis is abnormal writhing movements, usually of the fingers, caused by a failure of joint position sense (proprioception) and indicates disruption of the proprioceptive pathway, from peripheral nerve to parietal cortex. I didn’t know this before.
Drift: L>R
FFM: R ++ L++
Squat: NO
Rombergs: not able to do with eyes open
No Lhermittes: this is good
Finger to nose: R ++ L++
Rapid Alternating Movements: Right decreased L decreased
Gait: unable to lift legs off ground, very wide and unsafe
Vibration decreased in left toes
Joint positioning (JPS) R fingertips- mild
JPS- L fingertips- mild/min
JPS- R and L toes severe
TEMP- decreased on L toes
Stick- mildly decreased on L foot
MOTOR-
Delt. BC TC Wrist Ext Grip IP Quads Hams TA EHL
R 5- 5 5- 5 4 4 4+ 4+ 3 2
L 5- 5 5- 5- 4+ 3+ 5- 4 2 1-2
Does anyone know what this means, other than that I have a screwed up CNS?
I have a high lactic acid, high pyruvic acid, and low hydroxypro on my latest labs. As you all know, I’ve got 2 O-bans, and high protein in the spinal tap. And I have possible lesions that showed up as large patchy areas in my brain stem on the last two MRI’S. I do have clear spinal MRI’s that were just done on a 3 T without contrast.
Does any of this paint a picture of anything? Or is just as clear as muddy water?
I feel like lumping in all, strapping myself into a wheelchair and calling it good. Why a doctor will look at me and try to help, and why I should trust one to help me, and not just give up, aside from all my symptoms. I also feel like one of our newbies here, asking why on earth we are here, and why we should go on. Guess it doesn’t hurt to hear it more than once, right?
Thank you.
~Sunnytoday~
Cognitive-mildly impaired
Fundus exam- temporlallor o.n. (spelling is weird?)
Red desat. –positive
CNS.
EOMIE: (something written here, can’t read it)
Head tilt: positive, mild to the left
Pursuit: (can’t read this either)
Shrug: decreased, weakness on the left
Dysarthria: mild
Dysphagia: positive
Tremor: positive-arms
Pseudo-athetosis: mild
Note:Pseudoathetosis is abnormal writhing movements, usually of the fingers, caused by a failure of joint position sense (proprioception) and indicates disruption of the proprioceptive pathway, from peripheral nerve to parietal cortex. I didn’t know this before.
Drift: L>R
FFM: R ++ L++
Squat: NO
Rombergs: not able to do with eyes open
No Lhermittes: this is good
Finger to nose: R ++ L++
Rapid Alternating Movements: Right decreased L decreased
Gait: unable to lift legs off ground, very wide and unsafe
Vibration decreased in left toes
Joint positioning (JPS) R fingertips- mild
JPS- L fingertips- mild/min
JPS- R and L toes severe
TEMP- decreased on L toes
Stick- mildly decreased on L foot
MOTOR-
Delt. BC TC Wrist Ext Grip IP Quads Hams TA EHL
R 5- 5 5- 5 4 4 4+ 4+ 3 2
L 5- 5 5- 5- 4+ 3+ 5- 4 2 1-2
Does anyone know what this means, other than that I have a screwed up CNS?
I have a high lactic acid, high pyruvic acid, and low hydroxypro on my latest labs. As you all know, I’ve got 2 O-bans, and high protein in the spinal tap. And I have possible lesions that showed up as large patchy areas in my brain stem on the last two MRI’S. I do have clear spinal MRI’s that were just done on a 3 T without contrast.
Does any of this paint a picture of anything? Or is just as clear as muddy water?
I feel like lumping in all, strapping myself into a wheelchair and calling it good. Why a doctor will look at me and try to help, and why I should trust one to help me, and not just give up, aside from all my symptoms. I also feel like one of our newbies here, asking why on earth we are here, and why we should go on. Guess it doesn’t hurt to hear it more than once, right?
Thank you.
~Sunnytoday~
Ok, you did AMAZiNG... thank you soo much. I do feel much better informed after reading that. Basically, it let me know that 1) they did write down exactly what they saw and 2) why they were so concerned when they looked into my eyes... they hummed and hawwed and would take FOREVER with that whole fundus exam thing and move me around to different areas in the room so they could see inside my eye better. They HATED that part, and Dr. K asked D. H to do it the 2nd visit and apparently he got the same results. I hope that's ok :)
Again, thank you!!
~Sunnytoday~
Again, thank you!!
~Sunnytoday~
Correction Sorry, I'm tired.........Hams = hamstring muscles which extend the hip and FLEX the knee
Sorry, I made a mistake above. Your Quads = quadracep muscles EXTEND the knee not flex it the knee.
Hi sunny.
I'll try my best to decifer your test results as best as I can which is hard to do without reading the chart myself.
Cognitive-mildly impaired
Fundus exam- temporlallor o.n. (spelling is weird?) : With an Ophthalmoscope, light is shone into the eye and the retina and the optic nerve is examined. This is called as Examination of the Fundus. I believe that temporal pallor of the optic nerve means that when the doctor did the fundus exam he noted that there was a temporal pallor of the optic nerve which means that there was a pallor i.e. pale appearance of the optic nerve in the temporal area of the nerve it think. Temporal means; off or pertaining to the temple or temples. I believe that when temporal pallor of the optic nerve is seen it would indicate a previous attack of optic neuritis of the same eye. If you go to this website http://www.jandoerffel.de/on.htm it discusses the visual changes seen in MS.
Red desat. –positive ???
CNS.
EOMIE: (something written here, can’t read it) ???
Head tilt: positive, mild to the left - means your head is positioned mildly toward the left side of your body instead of being positioned normally at midline.
Pursuit: (can’t read this either) ???
Shrug: decreased, weakness on the left - the shoulder muscles (deltoids and trapazeous muscles that allow you to shrug your shoulders are weaker on your left side VS. the right.
Dysarthria: mild Means you have a mild speech defecit that may cause imperfect articulation of speech due to disturbances of muscular control which result may be due to damage to the central or peripheral nervous system.
Dysphagia: positive Means Difficulty in swallowing.
Tremor: positive-arms Means both arms are An involuntary trembling or quivering.
Pseudo-athetosis: mild - I think you explained this below
Note:Pseudoathetosis is abnormal writhing movements, usually of the fingers, caused by a failure of joint position sense (proprioception) and indicates disruption of the proprioceptive pathway, from peripheral nerve to parietal cortex. I didn’t know this before.
Drift: L>R : I think this means that your body or trunk is leaning or drifting more to the left verses the right because the muscles of your head, shoulders and trunk seem to be much weaker
FFM: R ++ L++ ??? Not sure what FFM is the abbreviation for.
Squat: NO
Rombergs: not able to do with eyes open. Means that when the neurologist did the Romberg test you couldn't do the test while keeping your eyes open.
Romberg Test: With feet approximated, the patient stands with eyes open and then closed; if closing the eyes increases the unsteadiness, a loss of proprioceptive control is indicated, and the sign is positive.
No Lhermittes: this is good
L'hermittes sign: No Sudden electric-like shocks extending down the spine on flexing the head.
Finger to nose: R ++ L++ When the doctor had you hold your arms out to the side, with your eyes closed you were able to touch your right and left fingers to your nose...indicates good position sense.
Rapid Alternating Movements: Right decreased L decreased : rapid alternating movements would be something like swinging your arms by your side while you walk...like when you step forward with your right leg, your left arm swings forward. I guess on neurological clinical exam your rapic alternating movements was decreased on both the righ and left sides of your body.
Gait: unable to lift legs off ground, very wide and unsafe Gait is your pattern of walking.
Because you are having such significant weakness of your legs and trunk musculature you are holding your legs far apart to lower your center of gravity and maintain your center of balance but obviously your unsteady and unsafe while walking.
Vibration decreased in left toes - you can't feel vibratory motion in you left toes
Joint positioning : I think when the neurologist has you close your eyes and asks you where your fingertips or toes where positioned you couldn't tell where your findertips or toes were positioned in space (up, down, right, left etc) you had mild changes in your fingers and more severe deficit in your toes
(JPS) R fingertips- mild
JPS- L fingertips- mild/min
JPS- R and L toes severe
TEMP- decreased on L toes: Means your left toes where colder than normal to the touch.
Stick- mildly decreased on L foot: I think this means that when the neurologist felt that your left toes were colder than normal to the touch he then wanted to test your sensation of your left foot so he stuck you with a sharp object to see of you could feel that sensation, which was decreased on the left foot VS the right foot.
MOTOR- Here the neurologist wanted to manually test your muscle strength by asking you to move certain body parts and press against his hand with your arms or legs muscles. For example, the neuro may ask you to flex your elbow, while you flex upward he would press down in the opposite direction and rate your muscle strength of your biceps muscle from 1 to 5. In your case your Biceps muscle was 5 out of 5 which means you had perfectly good strength and you could flex the elbow against maximal resistance. The lower the number the weaker the muscle strength.
Delt = Deltoid Muscle, BC = biceps muscle, TC = Triceps muscle, Wrist Extensor muscles (extensor carpi radialis and ulnaris muscles), Grip = muscles that allow you to flex the hand and fingers, IP = iliopsoas muscle which flexes the hip, Quads = quadracep muscles flex the knee, Hams = hamstring muscles which extend the hip, TA = Tibialis Anterior muscles which dorsiflexes the foot (moves the foot upward), EHL= Extensor Hallucis Longus muscle which extends the great toe.
Delt. BC TC Wrist Ext Grip IP Quads Hams TA EHL
R 5- 5 5- 5 4 4 4+ 4+ 3 2
L 5- 5 5- 5- 4+ 3+ 5- 4 2 1-2
Grade 5: Patient can hold the position against maximum resistance and through complete range of motion.
Grade 4: Patient can hold the position against strong to moderate resistance, has full range of motion.
Grade 3: Patient can tolerate no resistance but can perform the movement through the full range of motion.
Grade 2: Patient has all or partial range of motion in the gravity eliminated position.
Grade 1: The muscle/muscles can be palpated while the patient is performing the action in the gravity eliminated position.
Grade 0: No contractile activity can be felt in the gravity eliminated position.
So, looking at your muscle grades it appears that you have sagnificant weakness of both Tibialis Anterior muscles which dorsiflexes the foot (moves the foot upward), and Extensor Hallucis Longus muscle which extends the great toe. A 2/5 grade for your left tibialis anterior muscle means that when you laid down and the doctor asked you to flex your ankle toward your head you could partially perform this movement without any resistance given. You also have some significant weakness of your hip flexors IP muscles.
Have you had an EMG/nerve conduction test done of your leg muscles yet?
I'll try my best to decifer your test results as best as I can which is hard to do without reading the chart myself.
Cognitive-mildly impaired
Fundus exam- temporlallor o.n. (spelling is weird?) : With an Ophthalmoscope, light is shone into the eye and the retina and the optic nerve is examined. This is called as Examination of the Fundus. I believe that temporal pallor of the optic nerve means that when the doctor did the fundus exam he noted that there was a temporal pallor of the optic nerve which means that there was a pallor i.e. pale appearance of the optic nerve in the temporal area of the nerve it think. Temporal means; off or pertaining to the temple or temples. I believe that when temporal pallor of the optic nerve is seen it would indicate a previous attack of optic neuritis of the same eye. If you go to this website http://www.jandoerffel.de/on.htm it discusses the visual changes seen in MS.
Red desat. –positive ???
CNS.
EOMIE: (something written here, can’t read it) ???
Head tilt: positive, mild to the left - means your head is positioned mildly toward the left side of your body instead of being positioned normally at midline.
Pursuit: (can’t read this either) ???
Shrug: decreased, weakness on the left - the shoulder muscles (deltoids and trapazeous muscles that allow you to shrug your shoulders are weaker on your left side VS. the right.
Dysarthria: mild Means you have a mild speech defecit that may cause imperfect articulation of speech due to disturbances of muscular control which result may be due to damage to the central or peripheral nervous system.
Dysphagia: positive Means Difficulty in swallowing.
Tremor: positive-arms Means both arms are An involuntary trembling or quivering.
Pseudo-athetosis: mild - I think you explained this below
Note:Pseudoathetosis is abnormal writhing movements, usually of the fingers, caused by a failure of joint position sense (proprioception) and indicates disruption of the proprioceptive pathway, from peripheral nerve to parietal cortex. I didn’t know this before.
Drift: L>R : I think this means that your body or trunk is leaning or drifting more to the left verses the right because the muscles of your head, shoulders and trunk seem to be much weaker
FFM: R ++ L++ ??? Not sure what FFM is the abbreviation for.
Squat: NO
Rombergs: not able to do with eyes open. Means that when the neurologist did the Romberg test you couldn't do the test while keeping your eyes open.
Romberg Test: With feet approximated, the patient stands with eyes open and then closed; if closing the eyes increases the unsteadiness, a loss of proprioceptive control is indicated, and the sign is positive.
No Lhermittes: this is good
L'hermittes sign: No Sudden electric-like shocks extending down the spine on flexing the head.
Finger to nose: R ++ L++ When the doctor had you hold your arms out to the side, with your eyes closed you were able to touch your right and left fingers to your nose...indicates good position sense.
Rapid Alternating Movements: Right decreased L decreased : rapid alternating movements would be something like swinging your arms by your side while you walk...like when you step forward with your right leg, your left arm swings forward. I guess on neurological clinical exam your rapic alternating movements was decreased on both the righ and left sides of your body.
Gait: unable to lift legs off ground, very wide and unsafe Gait is your pattern of walking.
Because you are having such significant weakness of your legs and trunk musculature you are holding your legs far apart to lower your center of gravity and maintain your center of balance but obviously your unsteady and unsafe while walking.
Vibration decreased in left toes - you can't feel vibratory motion in you left toes
Joint positioning : I think when the neurologist has you close your eyes and asks you where your fingertips or toes where positioned you couldn't tell where your findertips or toes were positioned in space (up, down, right, left etc) you had mild changes in your fingers and more severe deficit in your toes
(JPS) R fingertips- mild
JPS- L fingertips- mild/min
JPS- R and L toes severe
TEMP- decreased on L toes: Means your left toes where colder than normal to the touch.
Stick- mildly decreased on L foot: I think this means that when the neurologist felt that your left toes were colder than normal to the touch he then wanted to test your sensation of your left foot so he stuck you with a sharp object to see of you could feel that sensation, which was decreased on the left foot VS the right foot.
MOTOR- Here the neurologist wanted to manually test your muscle strength by asking you to move certain body parts and press against his hand with your arms or legs muscles. For example, the neuro may ask you to flex your elbow, while you flex upward he would press down in the opposite direction and rate your muscle strength of your biceps muscle from 1 to 5. In your case your Biceps muscle was 5 out of 5 which means you had perfectly good strength and you could flex the elbow against maximal resistance. The lower the number the weaker the muscle strength.
Delt = Deltoid Muscle, BC = biceps muscle, TC = Triceps muscle, Wrist Extensor muscles (extensor carpi radialis and ulnaris muscles), Grip = muscles that allow you to flex the hand and fingers, IP = iliopsoas muscle which flexes the hip, Quads = quadracep muscles flex the knee, Hams = hamstring muscles which extend the hip, TA = Tibialis Anterior muscles which dorsiflexes the foot (moves the foot upward), EHL= Extensor Hallucis Longus muscle which extends the great toe.
Delt. BC TC Wrist Ext Grip IP Quads Hams TA EHL
R 5- 5 5- 5 4 4 4+ 4+ 3 2
L 5- 5 5- 5- 4+ 3+ 5- 4 2 1-2
Grade 5: Patient can hold the position against maximum resistance and through complete range of motion.
Grade 4: Patient can hold the position against strong to moderate resistance, has full range of motion.
Grade 3: Patient can tolerate no resistance but can perform the movement through the full range of motion.
Grade 2: Patient has all or partial range of motion in the gravity eliminated position.
Grade 1: The muscle/muscles can be palpated while the patient is performing the action in the gravity eliminated position.
Grade 0: No contractile activity can be felt in the gravity eliminated position.
So, looking at your muscle grades it appears that you have sagnificant weakness of both Tibialis Anterior muscles which dorsiflexes the foot (moves the foot upward), and Extensor Hallucis Longus muscle which extends the great toe. A 2/5 grade for your left tibialis anterior muscle means that when you laid down and the doctor asked you to flex your ankle toward your head you could partially perform this movement without any resistance given. You also have some significant weakness of your hip flexors IP muscles.
Have you had an EMG/nerve conduction test done of your leg muscles yet?
Bio & Lulu... my PCP won't translate anything for me, he just says "you need a neurologist"... which is why I am always on this forum, either asking for your help, or asking for your suggestions where in the US I can go for help. Our next step is to go to Vanderbilt, we are on a high priority waiting list and hope to be in by the 29th of Dec. and if that for some reason wouldn't work out we do have a back-up appt. at the Mayo clinic in Jacksonville. We've found that it may take SEVERAL of these top center's before someone, some dr. decides to pay attention. I hope not.
Today was a good day... and I enjoyed it thoroughly. I hope you are enjoying your day too!
~Sunnytoday~
Today was a good day... and I enjoyed it thoroughly. I hope you are enjoying your day too!
~Sunnytoday~
Sunny,
Can you take all of these test results to your local doctor whom you have a good rapport with and ask for help to translate it into plain English? Perhaps they could make sense of it all, heavens knows I can't.
You are a special young woman, and it is only natural to feel the highs and lows of life with all this c rap being thrown aat you and your body. Go with it and allow yourself to put it aside, but only temporarily. I like the wave analogy - I can picture you paddling out there on those wavess on a surf board being swallowed up. But one of those waves you are going to catch and have the ride of your life!!
Tomorrows a new day, make the most of it!
Lulu
Can you take all of these test results to your local doctor whom you have a good rapport with and ask for help to translate it into plain English? Perhaps they could make sense of it all, heavens knows I can't.
You are a special young woman, and it is only natural to feel the highs and lows of life with all this c rap being thrown aat you and your body. Go with it and allow yourself to put it aside, but only temporarily. I like the wave analogy - I can picture you paddling out there on those wavess on a surf board being swallowed up. But one of those waves you are going to catch and have the ride of your life!!
Tomorrows a new day, make the most of it!
Lulu
Sho, that's interesting information.
Sunny...you live up to your user name. I am not an MD and certainly not a neuro, so I can't comment on your laundry list of findings there except to say the obvious: Someone needs to be paying some real attention to this.
Bio
Sunny...you live up to your user name. I am not an MD and certainly not a neuro, so I can't comment on your laundry list of findings there except to say the obvious: Someone needs to be paying some real attention to this.
Bio
I'm so sorry that you got a report all in medicalese and you don't really have anyone to help you dissect it and no answers and NYU isn't being too helpful. I hope your upcoming appointments will be more fruitful.
I just wanted to say that one sentence in your last post struck me as being one of the suckier things about MS: "just as soon as I feel like I've 'accepted' whatever is happening, something gets worse, or I get a new report in the mail and i just go down again mentally." There have been studies that suggest that people have something like a happiness setpoint so even if people win the lottery or are paralyzed after a while (maybe a year), they tend to revert to their setpoint. But if every time you start to get adapted, you get whacked again, that makes it really hard to find that balanced point.
I appreciate your bright spirit despite all you've been through.
sho
I just wanted to say that one sentence in your last post struck me as being one of the suckier things about MS: "just as soon as I feel like I've 'accepted' whatever is happening, something gets worse, or I get a new report in the mail and i just go down again mentally." There have been studies that suggest that people have something like a happiness setpoint so even if people win the lottery or are paralyzed after a while (maybe a year), they tend to revert to their setpoint. But if every time you start to get adapted, you get whacked again, that makes it really hard to find that balanced point.
I appreciate your bright spirit despite all you've been through.
sho
Mokie- I don't want to know how long I've been on this rollercoaster ride, and I don't want to know how long it will take to get off it. I'm sad that you've been in limbo for three years, this is a tough place to be.... limbo is a correct term because just as soon as I feel like I've "accepted" whatever is happening, something gets worse, or I get a new report in the mail and i just go down again mentally and so am sooo thankful for all of your support.... this forum is what pulls me through.
Maggie- I did not want to make anyone sad, I was just feeling so down and rather out and I know that's not the usual for my sunny self. I'm thankful for your prayer, it was very comforting.
jules- my friend keeps asking and telling me that I should go on one of those shows to see if they will help diagnose me, but at this point I don't like the publicity.... but it would be worth a shot if I'd get really bad. (I say that anything that affects your breathing is really bad, and seeing that I can still breathe, I'm still managing in my book). I will consider it if all else fails though.
Elaine- yes, this is NYU's notes, from the fist visit, they didn't send the 2nd visit's notes.
Wobbly- answers would be amazing, but your support is wonderful too. Thanks for being there for me.
Doni- thanks for the love and optimism, it makes me want to pull on. I do feel sunnier today, and I know it's going to be ok. It's just that reading those notes made me down and out, and the future looked scary without answers. I'm going to put that all away and just face the future anyways, and try not to think about it. Thanks for the support, I needed it.
Kathy- waves just about summs it all up... I sorta crashed down in the bottom of one when all those reports came in the other day. Everyone here is pulling me up again, and I'll be ok... i'm going to put those reports along with my thoughts about them in a drawer and just focus on enjoying life (that had been my goal before this had sorta bashed me upside the head and said "look, your health is awful"). I can't focus on that, and so now I must move on... I spent a day googling terms, figured out that my body is in a rather bad shape, and decided that I must... as you put it, ride a wave up and out of here and just forget about this.... if I think about it.... it overwhelms me.
To all---- I hope you are feeling some of our gorgeous weather, I feel like it a sunny day in my world, so I'm going to catch a nap and then go out and about... and then go to ihop to eat supper with a friend and then go and rent a movie.
If anyone else would like to comment or google my neuro report, feel free to do so... I just wanted to thank everyone who had commented, it really helped me.
Have a wonderful sunny Sun-Day
~Sunnytoday~
Maggie- I did not want to make anyone sad, I was just feeling so down and rather out and I know that's not the usual for my sunny self. I'm thankful for your prayer, it was very comforting.
jules- my friend keeps asking and telling me that I should go on one of those shows to see if they will help diagnose me, but at this point I don't like the publicity.... but it would be worth a shot if I'd get really bad. (I say that anything that affects your breathing is really bad, and seeing that I can still breathe, I'm still managing in my book). I will consider it if all else fails though.
Elaine- yes, this is NYU's notes, from the fist visit, they didn't send the 2nd visit's notes.
Wobbly- answers would be amazing, but your support is wonderful too. Thanks for being there for me.
Doni- thanks for the love and optimism, it makes me want to pull on. I do feel sunnier today, and I know it's going to be ok. It's just that reading those notes made me down and out, and the future looked scary without answers. I'm going to put that all away and just face the future anyways, and try not to think about it. Thanks for the support, I needed it.
Kathy- waves just about summs it all up... I sorta crashed down in the bottom of one when all those reports came in the other day. Everyone here is pulling me up again, and I'll be ok... i'm going to put those reports along with my thoughts about them in a drawer and just focus on enjoying life (that had been my goal before this had sorta bashed me upside the head and said "look, your health is awful"). I can't focus on that, and so now I must move on... I spent a day googling terms, figured out that my body is in a rather bad shape, and decided that I must... as you put it, ride a wave up and out of here and just forget about this.... if I think about it.... it overwhelms me.
To all---- I hope you are feeling some of our gorgeous weather, I feel like it a sunny day in my world, so I'm going to catch a nap and then go out and about... and then go to ihop to eat supper with a friend and then go and rent a movie.
If anyone else would like to comment or google my neuro report, feel free to do so... I just wanted to thank everyone who had commented, it really helped me.
Have a wonderful sunny Sun-Day
~Sunnytoday~
Thank you for putting moisture in my dry eyes. I've come to care for you so much, it hurts to see you down. You have every right feel down, so don't feel like you have to force yourself to be sunny. Just remember that you are very much loved and appreciated by so many here, and I'm sure in your every-day life, and that you have strength and faith that have carried you through so much all ready, and will lift you up again.
I wish I could help you with the test results, but I'm pretty clueless, and I don't know if googling terms would help much.
You aren't a newbie; you're riding on the ocean of limboland, and there are big waves in that ocean. Sometimes you have to go down in the troughs between waves before you rise up again. Just remember, you don't sink. Like the rest of us persistent limbolanders, you'll ride up on the next wave, hail the next doctor, and finally find someone with answers and help.
I know its hard to bear sometimes, but you've got an immense support system. We all appreciate the help and smiles you've given us, and love you very much.
Ride the waves, girl, we're here with you.
Love and Hugs,
Kathy
I wish I could help you with the test results, but I'm pretty clueless, and I don't know if googling terms would help much.
You aren't a newbie; you're riding on the ocean of limboland, and there are big waves in that ocean. Sometimes you have to go down in the troughs between waves before you rise up again. Just remember, you don't sink. Like the rest of us persistent limbolanders, you'll ride up on the next wave, hail the next doctor, and finally find someone with answers and help.
I know its hard to bear sometimes, but you've got an immense support system. We all appreciate the help and smiles you've given us, and love you very much.
Ride the waves, girl, we're here with you.
Love and Hugs,
Kathy
I have often thought how unfair life is to have such a sweet and happy young lady like you, going through what you have been going through. Not having answers to what is happening only makes it worse.
You are greatly loved here on this forum. You have made all of us smile many times, even when we might not have anything to smile about. You've been tough, positive and uplifting to all of us.
It's okay to feel down, all of us get this way, whether it be the ones dx with MS or all us limbolanders. It's just the way we feel some time. I know you don't really want to give up, you're our SUNNY GIRL!!!! We're here for you and support you in your quest for answers. Just always talk to us so that we can help when you need us.
Maggie's prayer is a great one, and I'm gonna remember it for myself and all on here who are struggling with MS or an unidentified monster who is changing our lives.
Sending you love, strength and optimism to fight for your answers. We're fighting with you Sunny, always.
Hugs
doni
You are greatly loved here on this forum. You have made all of us smile many times, even when we might not have anything to smile about. You've been tough, positive and uplifting to all of us.
It's okay to feel down, all of us get this way, whether it be the ones dx with MS or all us limbolanders. It's just the way we feel some time. I know you don't really want to give up, you're our SUNNY GIRL!!!! We're here for you and support you in your quest for answers. Just always talk to us so that we can help when you need us.
Maggie's prayer is a great one, and I'm gonna remember it for myself and all on here who are struggling with MS or an unidentified monster who is changing our lives.
Sending you love, strength and optimism to fight for your answers. We're fighting with you Sunny, always.
Hugs
doni
I don't know what to say ... I do understand how you feel and know because I have been there... It's not easy, but we are here for you dear... and you can chat and vent and ask all the questions you need...I only wish we could give more answers to help...
please try to contact one of your Dr and ask to see them...bring all these reports and say you need them explained... see a Hemotologist about the blood test reports...
wish I could help more... take care
wobbly
undx
please try to contact one of your Dr and ask to see them...bring all these reports and say you need them explained... see a Hemotologist about the blood test reports...
wish I could help more... take care
wobbly
undx
Sunny, hang in there. Do you have any doctors that you trust or that you have connected with? If so I would enlist their help. Have you tried an internist yet to oversee your case? It's hard to start again. I know. Still, if you can find one doctor that wants to get the answers they can help guide the process.
I know you've been through all of this. It stinks to start over again. I believe in my heart of hearts that one of your doctors will step up and coordinate your case. You could go back to the beginning and ask friends/colleagues if they have a primary care doc that they like. Maybe one of the doctors could talk with the genetisist that wouldn't dx you.
At this point you and your family probably care less about what it is than at least knowing what it is. I'm disappointed in our medical system that even with your appts at top centers they can't dx you.
At this point why not try everything - even the wild ideas like - emailing the various tv shows like Oprah w/Dr. Oz, The Doctors, Dr. Phil, TLC Mystery Diagnosis and giving them a summary of your case and asking if any of them would be willing to assist with your case and help you get a dx. There is always the chance that you will get that one producer's interest. Possibly try some of the top medical schools and ask them if your test results could be used by senior students to try and dx. Since you have all of the test results they would just review it. And I think some one mentioned in an earlier post that Johns Hopkins has a Second Consult on line service where you send them your results and they will review them. Actually you might try that one first. There is a reasonable fee for the service.
In the mean time I'm sending you a great big cyber hug and keeping you in my prayers. Cheers, Jules
I know you've been through all of this. It stinks to start over again. I believe in my heart of hearts that one of your doctors will step up and coordinate your case. You could go back to the beginning and ask friends/colleagues if they have a primary care doc that they like. Maybe one of the doctors could talk with the genetisist that wouldn't dx you.
At this point you and your family probably care less about what it is than at least knowing what it is. I'm disappointed in our medical system that even with your appts at top centers they can't dx you.
At this point why not try everything - even the wild ideas like - emailing the various tv shows like Oprah w/Dr. Oz, The Doctors, Dr. Phil, TLC Mystery Diagnosis and giving them a summary of your case and asking if any of them would be willing to assist with your case and help you get a dx. There is always the chance that you will get that one producer's interest. Possibly try some of the top medical schools and ask them if your test results could be used by senior students to try and dx. Since you have all of the test results they would just review it. And I think some one mentioned in an earlier post that Johns Hopkins has a Second Consult on line service where you send them your results and they will review them. Actually you might try that one first. There is a reasonable fee for the service.
In the mean time I'm sending you a great big cyber hug and keeping you in my prayers. Cheers, Jules
Your final words made me so sad. There is a reason for you to be here. we may not know what it is now, but God does. The following is from the Episcopal Book of Common Prayer. I hope it doesn't offend you.
This is another day, O Lord. I know not what it will bring Lord, but make me ready. Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the Spirit of Jesus. Amen
This prayer brought me great comfort and strength while I watched my husband die. Believe me Sunny, you are precious and loved by all who know you. You must keep fighting. May the blessings of God, and the healing power of the Holy Spirit be with you always.
Maggie
This is another day, O Lord. I know not what it will bring Lord, but make me ready. Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the Spirit of Jesus. Amen
This prayer brought me great comfort and strength while I watched my husband die. Believe me Sunny, you are precious and loved by all who know you. You must keep fighting. May the blessings of God, and the healing power of the Holy Spirit be with you always.
Maggie
Hon, I feel for you so much. As for your reports, well to be honest they are as clear to me as muddy water. I've been undiagnosed for over 3 years and to be honest don't understand why.
You can't give up though hon. There is something really wrong with you and there is a doctor out there who will help you, I feel that in my heart. I hate to tell you that you just need to be patient. Gosh I hate that word. I know you must really be feeling down over all this but know you are never alone. We are all here for you and even though we can't give you your diagnosis, will always support you in any way we can.
We'll hang out in limbo together okay? You, me and the rest of the limboers.
Sending you love and gentle hugs
Moki
You can't give up though hon. There is something really wrong with you and there is a doctor out there who will help you, I feel that in my heart. I hate to tell you that you just need to be patient. Gosh I hate that word. I know you must really be feeling down over all this but know you are never alone. We are all here for you and even though we can't give you your diagnosis, will always support you in any way we can.
We'll hang out in limbo together okay? You, me and the rest of the limboers.
Sending you love and gentle hugs
Moki
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