Aa
7 years/ 3 "episodes" and no Dx
I am a 46 male, who has had 3 episodes in 7 years...
In late july 2001, I came home one evening from Wake Forest where I was finishing up the Evening MBA program and i told my wife that I felt viral. That was a Wednesday. I was off on Friday so I was getting my two-year-old son dressed to go somewhere and I couldn't pinch my fingers together strong enough to pull of his sock. Saturday we went the emergency room and by Sunday I couldn't stand. The neurologist thought initially that I had Guillain-Barre syndrome, but at the end the Neurologist thought it may be a virus - Transverse Myelitis. Although, over the three days that I was in the hospital he talked about MS a lot. They found an older lesion on my 2nd thoracic vertabra which he said was not causing the current problem. I had tingling, bladder problems, terrible fine motor skills (FMS) especially in my hands, etc... It took about 6 months to regain most of my strength back.
Now to 2003, for about a month that summer, I had weak knees, the pads of my feet were numb (which made me feel like I was going to fall over), electric shock feeling, bladder problems, my skin sometimes felt like there were bugs crawling on it, my banding muscles around my stomach contracted three times so hard that I doubled over like someone had punched me in the stomach, hands were terrible with tingling and loss of FMS - ziploc bags are my arch enemy! Anyway, none of these things were terrible, but they were troubling in that they were all clustered together like they were.
On to now:
August 2, 2008, I did a lot of manual yardwork and got really hot. Two days later I started feeling viral feelings again, it felt kind of like a kidney infection, punched-in-the-back sort of feeling. This feeling ultimately shifted to the pelvis area and it is still there today (I had this exact feeling just before the 2001 episode, like someone is pressing their thumb an inch or so to either side of my spine FROM THE INSIDE OUT!!!!) This progressively got worse all week and Friday I felt terrible and I slept 13 hours that night! Considering that I take adderall for ADHD (which developed during this 7 year period and depression too....), which usually lets me sleep 6 hours, 13 is crazy! Anyway, jump forward to the next weekend and my back started hurting again, followed by another couple of 12 hour sleeping nights.... That Monday I went to my doctor to tweak my ADHD medicines and she said that I looked tense, so she took my B/P, which was 163/110... I have been on B/P medicine for several years and my blood pressure was usually close to normal. So, she took me off the Adderall because it tends to raise the B/P. I went to the GP the next day and he added an additional B/P medicine to get it down to normal. From here through today I have had an inordinate amount of symptoms: FATIGUE!!!! (I slept around the clock the first 7 days) but now I get winded if I walk up stairs, when I reach for something, I knock it over, I have intention tremors (I had to you both hands on the fork to keep from slinging rice all over the restaurant, recently) killer constipation, urine retention, leg spasms so bad at night that it lifts my body off of the bed (for 5 nights probably 20 a night), muscle twitching, weak knees, the worst FMS in my hands of the 3 "episodes", muscles feel like they are being electrocuted, or sometimes the just vibrate (at night especially), trigeminal nerve pain and pressure, numbness in ear, and some intermittant loss of hearing, clicking in my ears, low grade fever for 4 weeks (in evening), muscle pains, muscle cramps in calves, toes and balls of feet, burning sensations, degradation of smell and taste, acid reflux, swallowing difficulties (liquid down windpipe), urinary hesitancy and some pain too, now I have terrible insomnia (i go right to sleep the wake up when I have to go to the bathroom (6 to 8 times) or when my back is tense. All of this even with taking a narcotic muscle relaxer.....
Throughout the entire 7 years I have had fleeting symptoms, mostly tingling, burning sensations, weak knees, and sometime I go through periods where I will bite my cheek at full force. Almost all of this happens in the summertime, especially after I get hot.
Also, serious memory, concentration and reasoning problems since about 2005. I have been diagnosed with ADHD and depression.
So far, there have been one lesion at T2 (which wasn't on the 2003 MRI and now is on T3 "Beware of the roaming lesion!!! :-) ) and nerve conduction tests were fine in '01 and yesterday. I had a lumbar puncture last Monday (waiting on results) and an MRI of the lower spine tomorrow.. My lumbar puncture in 2001 showed elevated protein levels, but I'm not sure what that means because it was all new to me then and I was in the hospital paralyzed and I didn't know what to ask.....
I have read over the last 7 years of people that have waited for years for a diagnosis even though they are exhibiting lots of MS symptoms, because the lesions on the brain don't show up initially.
I am frustrated because the neuro here in Charlotte treats me like I am faking because he doesn't see any stupid lesions.... I almost slapped the doc yesterday I was so mad at him. I am probably switching to the MS Center here at one of the big hospital chains after I get all of my results back.
Anyway,
That is my story, thus far...
OperaMBA
In late july 2001, I came home one evening from Wake Forest where I was finishing up the Evening MBA program and i told my wife that I felt viral. That was a Wednesday. I was off on Friday so I was getting my two-year-old son dressed to go somewhere and I couldn't pinch my fingers together strong enough to pull of his sock. Saturday we went the emergency room and by Sunday I couldn't stand. The neurologist thought initially that I had Guillain-Barre syndrome, but at the end the Neurologist thought it may be a virus - Transverse Myelitis. Although, over the three days that I was in the hospital he talked about MS a lot. They found an older lesion on my 2nd thoracic vertabra which he said was not causing the current problem. I had tingling, bladder problems, terrible fine motor skills (FMS) especially in my hands, etc... It took about 6 months to regain most of my strength back.
Now to 2003, for about a month that summer, I had weak knees, the pads of my feet were numb (which made me feel like I was going to fall over), electric shock feeling, bladder problems, my skin sometimes felt like there were bugs crawling on it, my banding muscles around my stomach contracted three times so hard that I doubled over like someone had punched me in the stomach, hands were terrible with tingling and loss of FMS - ziploc bags are my arch enemy! Anyway, none of these things were terrible, but they were troubling in that they were all clustered together like they were.
On to now:
August 2, 2008, I did a lot of manual yardwork and got really hot. Two days later I started feeling viral feelings again, it felt kind of like a kidney infection, punched-in-the-back sort of feeling. This feeling ultimately shifted to the pelvis area and it is still there today (I had this exact feeling just before the 2001 episode, like someone is pressing their thumb an inch or so to either side of my spine FROM THE INSIDE OUT!!!!) This progressively got worse all week and Friday I felt terrible and I slept 13 hours that night! Considering that I take adderall for ADHD (which developed during this 7 year period and depression too....), which usually lets me sleep 6 hours, 13 is crazy! Anyway, jump forward to the next weekend and my back started hurting again, followed by another couple of 12 hour sleeping nights.... That Monday I went to my doctor to tweak my ADHD medicines and she said that I looked tense, so she took my B/P, which was 163/110... I have been on B/P medicine for several years and my blood pressure was usually close to normal. So, she took me off the Adderall because it tends to raise the B/P. I went to the GP the next day and he added an additional B/P medicine to get it down to normal. From here through today I have had an inordinate amount of symptoms: FATIGUE!!!! (I slept around the clock the first 7 days) but now I get winded if I walk up stairs, when I reach for something, I knock it over, I have intention tremors (I had to you both hands on the fork to keep from slinging rice all over the restaurant, recently) killer constipation, urine retention, leg spasms so bad at night that it lifts my body off of the bed (for 5 nights probably 20 a night), muscle twitching, weak knees, the worst FMS in my hands of the 3 "episodes", muscles feel like they are being electrocuted, or sometimes the just vibrate (at night especially), trigeminal nerve pain and pressure, numbness in ear, and some intermittant loss of hearing, clicking in my ears, low grade fever for 4 weeks (in evening), muscle pains, muscle cramps in calves, toes and balls of feet, burning sensations, degradation of smell and taste, acid reflux, swallowing difficulties (liquid down windpipe), urinary hesitancy and some pain too, now I have terrible insomnia (i go right to sleep the wake up when I have to go to the bathroom (6 to 8 times) or when my back is tense. All of this even with taking a narcotic muscle relaxer.....
Throughout the entire 7 years I have had fleeting symptoms, mostly tingling, burning sensations, weak knees, and sometime I go through periods where I will bite my cheek at full force. Almost all of this happens in the summertime, especially after I get hot.
Also, serious memory, concentration and reasoning problems since about 2005. I have been diagnosed with ADHD and depression.
So far, there have been one lesion at T2 (which wasn't on the 2003 MRI and now is on T3 "Beware of the roaming lesion!!! :-) ) and nerve conduction tests were fine in '01 and yesterday. I had a lumbar puncture last Monday (waiting on results) and an MRI of the lower spine tomorrow.. My lumbar puncture in 2001 showed elevated protein levels, but I'm not sure what that means because it was all new to me then and I was in the hospital paralyzed and I didn't know what to ask.....
I have read over the last 7 years of people that have waited for years for a diagnosis even though they are exhibiting lots of MS symptoms, because the lesions on the brain don't show up initially.
I am frustrated because the neuro here in Charlotte treats me like I am faking because he doesn't see any stupid lesions.... I almost slapped the doc yesterday I was so mad at him. I am probably switching to the MS Center here at one of the big hospital chains after I get all of my results back.
Anyway,
That is my story, thus far...
OperaMBA
I am glad you finally got a diagnosis!
You will get more responses if you create your own thread, because more people will read it! :-) Laura and some of the other ladies have been having a discussion about meds over the last couple of days, also, so you could jump in with them.
I don't have a diagnosis yet, so I haven't jumped into the meds decisions yet!
Good luck! There are tons of knowledgeable folks on this site and kind too.
Richard
OperaMBA
You will get more responses if you create your own thread, because more people will read it! :-) Laura and some of the other ladies have been having a discussion about meds over the last couple of days, also, so you could jump in with them.
I don't have a diagnosis yet, so I haven't jumped into the meds decisions yet!
Good luck! There are tons of knowledgeable folks on this site and kind too.
Richard
OperaMBA
Hello everyone,
I was just told I have MS after years of pain and not haven a clue , I have a VP shunt and it was always over looked. Now they want to treat me with avonex. I'm looking to learn more about what the best drug and if there is any or how I guess not to get caught up in the drug Mill . Is there any Herb's or vitamin that other use that help and natural remedies ? I have learned heat is my Worst by far. I have RRMS any knowledge would be greatly Thanks
I was just told I have MS after years of pain and not haven a clue , I have a VP shunt and it was always over looked. Now they want to treat me with avonex. I'm looking to learn more about what the best drug and if there is any or how I guess not to get caught up in the drug Mill . Is there any Herb's or vitamin that other use that help and natural remedies ? I have learned heat is my Worst by far. I have RRMS any knowledge would be greatly Thanks
Thanks for all of the good information!
I am going to call the radiologist group tomorrow to find out about the Tesla rating.
I found out today that the specialist must see my records and history before he will see me. So, in concert with what is mentioned above about getting my info together, I will gather whatever this chap needs to see in order to see me.
Thanks for the encouragement!
Richard
OperaMBA
I am going to call the radiologist group tomorrow to find out about the Tesla rating.
I found out today that the specialist must see my records and history before he will see me. So, in concert with what is mentioned above about getting my info together, I will gather whatever this chap needs to see in order to see me.
Thanks for the encouragement!
Richard
OperaMBA
This all sounds horribly familiar, Richard!
Everybody else has given you marvelous advice. Timelines are important for the MS specialist, so you can show how your symptoms started and changed over time. List everything, including the embarrassing stuff.
As for the dangerous stuff... Blood pressure is something to keep an eye on. Be careful when swallowing. Drink plenty of fluids, because the colon will suck up all the water, and then nothing will go anywhere. (Extremely horrible, I can assure you.) Keep up with the cranberry juice cocktail, as it will help the acidity in your bladder.
I know you've probably gotten enough info on the MRIs by now, but the higher the Tesla, the better - at least 1.5, and 3.0 if you can find it. Always make sure they do it with gadolinium contrast, as there's no point in doing an MRI without it. You also have the option of getting a VEP (visual evoked potential) for measuring the speed of your optic nerve. A new test for MS is something called optical coherence tomography, which measures the thickness of your optic nerve - it degenerates with MS activity.
Lesions in the spine are very difficult to find, so even with a new MRI, they may not be able to find a lesion that's there.
Get that MS specialist going as soon as possible - there's a lot of out-of-touch neuros out there, and it looks like you've found one. Good luck!
Everybody else has given you marvelous advice. Timelines are important for the MS specialist, so you can show how your symptoms started and changed over time. List everything, including the embarrassing stuff.
As for the dangerous stuff... Blood pressure is something to keep an eye on. Be careful when swallowing. Drink plenty of fluids, because the colon will suck up all the water, and then nothing will go anywhere. (Extremely horrible, I can assure you.) Keep up with the cranberry juice cocktail, as it will help the acidity in your bladder.
I know you've probably gotten enough info on the MRIs by now, but the higher the Tesla, the better - at least 1.5, and 3.0 if you can find it. Always make sure they do it with gadolinium contrast, as there's no point in doing an MRI without it. You also have the option of getting a VEP (visual evoked potential) for measuring the speed of your optic nerve. A new test for MS is something called optical coherence tomography, which measures the thickness of your optic nerve - it degenerates with MS activity.
Lesions in the spine are very difficult to find, so even with a new MRI, they may not be able to find a lesion that's there.
Get that MS specialist going as soon as possible - there's a lot of out-of-touch neuros out there, and it looks like you've found one. Good luck!
I think the neuro may have the MRI report, but he has yet to review it.
I have had a couple of times where I have had the forgot how to swallow sensation, but only while swallowing saliva (so far). Also, this sensation first started with the sensation that my tongue was getting tired, during eating. Weird stuff.
Last night, I think that I had tingling inside of behind my left eyeball. That was the weirdest feeling to date!
I am worried too.
I'll keep you posted!
I am keeping a daily log of all of this stuff for 4 days or so.
Richard
OperaMBA
I have had a couple of times where I have had the forgot how to swallow sensation, but only while swallowing saliva (so far). Also, this sensation first started with the sensation that my tongue was getting tired, during eating. Weird stuff.
Last night, I think that I had tingling inside of behind my left eyeball. That was the weirdest feeling to date!
I am worried too.
I'll keep you posted!
I am keeping a daily log of all of this stuff for 4 days or so.
Richard
OperaMBA
Until you find out from a specialist about what is going on, please, please, please, be very careful when you are chewing and swallowing. I have experienced this many times during my course with MS and it's scary when you cannot get something to go down. It almost feels like my throat is paralyzed. Like I can't "remember" HOW to swallow. If you can't swallow for a few seconds, it's best to spit the food out, rather than risk choking. This isn't something to fool around with.
I have a lesion in my thoracic spine as well as many in my brain, but I feel that I may have a "hidden lesion" that is causing these episodic swallowing problems. At present the swallowing problems have been on-going for about 2 1/2 months now and is most pronounced later in the day when I am tired. The esophagus, like any other muscle can fatigue and spasm.
I am not presently in an active flare up, but was told by my Neurologist that I may have to have a barium swallow done to check my swallowing reflexes and have them watch the motility of fluid down my gullet.
You have alot to tell your doctor about. The swallowing problems can cause real problems, especially if liquids are aspirated in to the lungs. I'm worried about you Richard. Please have your wife or someone else around when you are eating...just in case.
I know this may sound off the wall, but when I had the first swallowing problems all I could think of was something like Lou Gehrig's disease. (ALS) I was terrified.
Keep us posted, will you? Oh did you get a written report on your latest MRI yet?
All the Best,
Heather
I have a lesion in my thoracic spine as well as many in my brain, but I feel that I may have a "hidden lesion" that is causing these episodic swallowing problems. At present the swallowing problems have been on-going for about 2 1/2 months now and is most pronounced later in the day when I am tired. The esophagus, like any other muscle can fatigue and spasm.
I am not presently in an active flare up, but was told by my Neurologist that I may have to have a barium swallow done to check my swallowing reflexes and have them watch the motility of fluid down my gullet.
You have alot to tell your doctor about. The swallowing problems can cause real problems, especially if liquids are aspirated in to the lungs. I'm worried about you Richard. Please have your wife or someone else around when you are eating...just in case.
I know this may sound off the wall, but when I had the first swallowing problems all I could think of was something like Lou Gehrig's disease. (ALS) I was terrified.
Keep us posted, will you? Oh did you get a written report on your latest MRI yet?
All the Best,
Heather
Thank you so much about for reading everything so carefully!
The PCP and the neuro both did blood tests for Lyme disease, heavy metals, Rocky mountian spotted fever, elevated white blood cell counts, rotation of the earth, gravity and average SAT score and God knows what else! :-)
They also did a urine test for kidney/bladder infection and whatever else they look for there.
My abdominal xray showed that my colon was completely full of stool and it just wasn't going anywhere.
I will ask him how he conducted the Lyme Disease test.
On the blood work the liver function test was slightly elevated as were the triglycerides, but he said they weren't dramatic.
I do believe that my bladder is not emptying. When I finish and drip :-), I never feel that i am completely done. I get up 6 to 8 times a night....
On a side note, I am not sure if I wrote this above, but I have been having difficulty swallowing. I would say 1 to 3 times a day I swallow liquids down my windpipe and cough. I ever did this swallowing excess saliva yesterday!
I looked over the "health discussions" upper right hand corner thingy and there is some excellent information there!
Thanks to everyone for the excellent information!
I am going to stay on the doc's to get all of the information and test results that I need!
Richard
OperaMBA
The PCP and the neuro both did blood tests for Lyme disease, heavy metals, Rocky mountian spotted fever, elevated white blood cell counts, rotation of the earth, gravity and average SAT score and God knows what else! :-)
They also did a urine test for kidney/bladder infection and whatever else they look for there.
My abdominal xray showed that my colon was completely full of stool and it just wasn't going anywhere.
I will ask him how he conducted the Lyme Disease test.
On the blood work the liver function test was slightly elevated as were the triglycerides, but he said they weren't dramatic.
I do believe that my bladder is not emptying. When I finish and drip :-), I never feel that i am completely done. I get up 6 to 8 times a night....
On a side note, I am not sure if I wrote this above, but I have been having difficulty swallowing. I would say 1 to 3 times a day I swallow liquids down my windpipe and cough. I ever did this swallowing excess saliva yesterday!
I looked over the "health discussions" upper right hand corner thingy and there is some excellent information there!
Thanks to everyone for the excellent information!
I am going to stay on the doc's to get all of the information and test results that I need!
Richard
OperaMBA
I am so glad that you have decided to grace our Forum, Richard. Welcome.
I am ONE of the old MS'ers around here. I have been diagnosed for over a decade.
I have read and re-read your post many times....trying to find a clue. Even though you report very convincing evidence of a neurological problem, sometimes a few of the symptoms we report will throw the doctor's off course, if they are looking for EVERYTHING Neurological.
Two things stick out in my mind. The low grade feverthat you had is on of them. This may have been due to a mild infection you had going on, that you didn't know anything about. If you had a diagnosis of MS, an infection anywhere in the body can exacerbate MS symptoms. Anything that disrupts the immune system.
The severe back pain you had, is mighty suggestive of a possible kidney infection, especially with the bladder problems that you report. This is a concerning symptom...enough so that your PCP should have you followed up by a Urologist. If you had something they call, "Neurogenic Bladder," this can cause all kinds of problems. Not emptying your bladder fully, frequent urination (which can also be caused by diabetes) urethra spasms making it painful to start the urine stream, pain when you are going and a urethral spasm for a minute or so, after going, etc. If your bladder is not emptying properly, that can set up infections, as you probably realize. Sometimes when the bladder is not empty with urine still present, it can back up into the kidneys. This CAN cause the pain you describe. Like I say, it's something that should be mentioned and followed up by your PCP and a urologist.
Richard, please, please keep a list of all your symptoms. Unfortunately in today's world, we have to do alot of work for the doctor's since they seem to be getting worse and worse as diagnosticians. We have to lay everything at their feet and they take it from there.
Your other symptoms tell this layperson, that if you do have MS you probably have lesion (s) in your spine causing most of your symptoms...in MY mind. Quite possibly. in the area of your brain stem, which houses our autonomic nervous system. Now that is just a guess Richard, as I know you have lesions in your brain as well, that the "duh" doctor has not figured out yet. Since MS is a white matter disease, no lesions will be found in the lumbar spine; that is grey matter.
I hope that your doctor has run the very sophisticated test for Lyme Disease. Alot are false negatives, when it is actually positive. Talk to your PCP about this if it hasn't been done.
I am sure as my brain wraps itself around more of your post, I will probably come up with more I want to mention, but for now I wanted to make sure that you knew you were most welcome here and glad that you joined us. We have a great bunch of folks here.
Best Wishes and keep posting...
Heather
I am ONE of the old MS'ers around here. I have been diagnosed for over a decade.
I have read and re-read your post many times....trying to find a clue. Even though you report very convincing evidence of a neurological problem, sometimes a few of the symptoms we report will throw the doctor's off course, if they are looking for EVERYTHING Neurological.
Two things stick out in my mind. The low grade feverthat you had is on of them. This may have been due to a mild infection you had going on, that you didn't know anything about. If you had a diagnosis of MS, an infection anywhere in the body can exacerbate MS symptoms. Anything that disrupts the immune system.
The severe back pain you had, is mighty suggestive of a possible kidney infection, especially with the bladder problems that you report. This is a concerning symptom...enough so that your PCP should have you followed up by a Urologist. If you had something they call, "Neurogenic Bladder," this can cause all kinds of problems. Not emptying your bladder fully, frequent urination (which can also be caused by diabetes) urethra spasms making it painful to start the urine stream, pain when you are going and a urethral spasm for a minute or so, after going, etc. If your bladder is not emptying properly, that can set up infections, as you probably realize. Sometimes when the bladder is not empty with urine still present, it can back up into the kidneys. This CAN cause the pain you describe. Like I say, it's something that should be mentioned and followed up by your PCP and a urologist.
Richard, please, please keep a list of all your symptoms. Unfortunately in today's world, we have to do alot of work for the doctor's since they seem to be getting worse and worse as diagnosticians. We have to lay everything at their feet and they take it from there.
Your other symptoms tell this layperson, that if you do have MS you probably have lesion (s) in your spine causing most of your symptoms...in MY mind. Quite possibly. in the area of your brain stem, which houses our autonomic nervous system. Now that is just a guess Richard, as I know you have lesions in your brain as well, that the "duh" doctor has not figured out yet. Since MS is a white matter disease, no lesions will be found in the lumbar spine; that is grey matter.
I hope that your doctor has run the very sophisticated test for Lyme Disease. Alot are false negatives, when it is actually positive. Talk to your PCP about this if it hasn't been done.
I am sure as my brain wraps itself around more of your post, I will probably come up with more I want to mention, but for now I wanted to make sure that you knew you were most welcome here and glad that you joined us. We have a great bunch of folks here.
Best Wishes and keep posting...
Heather
I haven't gotten my hands on the reports yet, but I will soon or I'm going go "shock and awe" on them! :-)
I don't recall what my PCP said on where the "non-specific" areas were, I was totally in the wiped out mode when he read them to me over the phone.
I haven't peeked yet, but I will shortly... I've been working from home the last 5 weeks doing some programming, but that will run out soon and then I'll have to be back "on the road" or I'll be unemployed. So, I've got a lot of different fish to fry... :-)
I don't recall what my PCP said on where the "non-specific" areas were, I was totally in the wiped out mode when he read them to me over the phone.
I haven't peeked yet, but I will shortly... I've been working from home the last 5 weeks doing some programming, but that will run out soon and then I'll have to be back "on the road" or I'll be unemployed. So, I've got a lot of different fish to fry... :-)
Next Question:
You mention "Non-specific demyelinated areas in the brain." Does the report say what areas they are located in?
Aren't demyelinated areas in the brain and spinal cord lesions? Scars? My gosh, I'm glad to hear you are parting ways w/this Neuro. Absolutely these lesions can be causing all your symptoms. Have you peeked at our Health Pages yet?
Take care,
shell
You mention "Non-specific demyelinated areas in the brain." Does the report say what areas they are located in?
Aren't demyelinated areas in the brain and spinal cord lesions? Scars? My gosh, I'm glad to hear you are parting ways w/this Neuro. Absolutely these lesions can be causing all your symptoms. Have you peeked at our Health Pages yet?
Take care,
shell
Thanks Laura,
I'll hit them up when they get around to running my spinal fluids (if they don't lose my blood first!) :-)
My barrage of questions will probably knock 'em over!
I'm off to bed. My head is spinning!
Richard
OperaMBA
I'll hit them up when they get around to running my spinal fluids (if they don't lose my blood first!) :-)
My barrage of questions will probably knock 'em over!
I'm off to bed. My head is spinning!
Richard
OperaMBA
Hi Richard,
Welcome to a great site - everyone is very helpful.
--------------------------------------------------------------------------------
Here's what the chemical tests should be from your LP - labtestsonline.org is my source of information -
"Chemical tests — a few routine tests are usually performed on CSF samples.
CSF glucose – normal is about 2/3 the concentration of blood glucose. Glucose levels may decrease when cells that are not normally present use up (metabolize) the glucose. These may include bacteria or cells present due to inflammation (WBCs) or shed by tumors.
CSF protein – only a small amount is normally present in CSF because proteins are large molecules and do not cross the blood/brain barrier easily. Decreases in CSF protein are not generally considered significant. Increases in protein are most commonly seen with:
Meningitis and brain abcess
Brain or spinal cord tumors
Multiple Sclerosis
Guillain-Barré Syndrome
Syphilis
If any of the initial tests are abnormal or if the doctor has reason to suspect a specific condition, then additional testing may be ordered. This may include one or more of the following:
CSF protein electrophoresis — separates different types of protein. Oligoclonal bands may be seen with multiple sclerosis and Lyme disease.
CSF IgG (Immunoglobulin G) — increased in some conditions, such as multiple sclerosis, herpes encephalitis, connective tissue diseases.
Myelin basic protein — seen when the covering of nerves (myelin) breaks down, such as with multiple sclerosis.
CSF lactic acid — often used to distinguish between viral and bacterial meningitis. The level will usually be increased with bacterial and fungal meningitis while it will remain normal or only slightly elevated with viral meningitis.
CSF lactate dehydrogenase (LD) — used to differentiate between bacterial and viral meningitis; may also be elevated with leukemia or stroke.
CSF glutamine — may be increased with liver disease: hepatic encephalopathy and Reye syndrome
CSF C-reactive protein (CRP) is an acute phase reactant and is elevated with inflammation. It is markedly increased with bacterial meningitis. Since it is very sensitive even with early bacterial meningitis, it is often used to distinguish between bacterial and viral meningitis.
Tumor markers — Carcinoembryonic antigen (CEA), alpha-fetoprotein (AFP), and hCG may be increased in cancers that have spread from other sites in the body (metastatic)."
Hope that helps in figuring out what all you might be looking at.
Be well,
Laura
Welcome to a great site - everyone is very helpful.
--------------------------------------------------------------------------------
Here's what the chemical tests should be from your LP - labtestsonline.org is my source of information -
"Chemical tests — a few routine tests are usually performed on CSF samples.
CSF glucose – normal is about 2/3 the concentration of blood glucose. Glucose levels may decrease when cells that are not normally present use up (metabolize) the glucose. These may include bacteria or cells present due to inflammation (WBCs) or shed by tumors.
CSF protein – only a small amount is normally present in CSF because proteins are large molecules and do not cross the blood/brain barrier easily. Decreases in CSF protein are not generally considered significant. Increases in protein are most commonly seen with:
Meningitis and brain abcess
Brain or spinal cord tumors
Multiple Sclerosis
Guillain-Barré Syndrome
Syphilis
If any of the initial tests are abnormal or if the doctor has reason to suspect a specific condition, then additional testing may be ordered. This may include one or more of the following:
CSF protein electrophoresis — separates different types of protein. Oligoclonal bands may be seen with multiple sclerosis and Lyme disease.
CSF IgG (Immunoglobulin G) — increased in some conditions, such as multiple sclerosis, herpes encephalitis, connective tissue diseases.
Myelin basic protein — seen when the covering of nerves (myelin) breaks down, such as with multiple sclerosis.
CSF lactic acid — often used to distinguish between viral and bacterial meningitis. The level will usually be increased with bacterial and fungal meningitis while it will remain normal or only slightly elevated with viral meningitis.
CSF lactate dehydrogenase (LD) — used to differentiate between bacterial and viral meningitis; may also be elevated with leukemia or stroke.
CSF glutamine — may be increased with liver disease: hepatic encephalopathy and Reye syndrome
CSF C-reactive protein (CRP) is an acute phase reactant and is elevated with inflammation. It is markedly increased with bacterial meningitis. Since it is very sensitive even with early bacterial meningitis, it is often used to distinguish between bacterial and viral meningitis.
Tumor markers — Carcinoembryonic antigen (CEA), alpha-fetoprotein (AFP), and hCG may be increased in cancers that have spread from other sites in the body (metastatic)."
Hope that helps in figuring out what all you might be looking at.
Be well,
Laura
Ladies,
I went fully spinal (mostly) today... MRI of Thoracic and Lumbar regions. Shell, I have had 3 Brain/cervical region MRI's: in 2001, 2003 and maybe 3 weeks ago (maybe 2?) :-) None of them have shown lesions, only non-specific demyelinated areas in the brain and spinal cord (yeah right, tell that to my body from head to toe!). The nice ladies at the radiology center today gave me a dvd with my scans from today, so I have been making heads and tails (literally) out of them! My oldest son, who will be nine in 5 weeks (the scientist) was totally intrigued with the images! Hopefully in a couple of days they will let me know what they find out on the LP and the lower spine MRI.
Shell, the doctor isn't looking for anything. He only requested these tests because I yelled at him. He thinks that my old lesion is causing these symptoms and it was even old in 2001. After this Monday when I meet with him, he and I will be parting ways, since he doesn't seem to be on the right page. I decided yesterday that I needed to get my hands on all of my previous test results, but thanks Shell for reminding me.
My PCP is pretty proactive, but I've only been with him for a year, but he is in the same medical system as the neurologist and the LP and the complete CNS MRI's that have been done this year, so I'm sure that he can get me what I need. The ones from '01 were in Greensboro, NC where I lived for 8 years, and 2003 are in Winston-Salem (those will be harder to track down, but I am persistant and aggravated too, so I should be able to find them too!
Anyway, thanks so much for the information and support. So far, my wife has been fairly invalidating with this episode, so I haven't really been able to talk with anyone consistently.
OperaMBA (Richard)
I went fully spinal (mostly) today... MRI of Thoracic and Lumbar regions. Shell, I have had 3 Brain/cervical region MRI's: in 2001, 2003 and maybe 3 weeks ago (maybe 2?) :-) None of them have shown lesions, only non-specific demyelinated areas in the brain and spinal cord (yeah right, tell that to my body from head to toe!). The nice ladies at the radiology center today gave me a dvd with my scans from today, so I have been making heads and tails (literally) out of them! My oldest son, who will be nine in 5 weeks (the scientist) was totally intrigued with the images! Hopefully in a couple of days they will let me know what they find out on the LP and the lower spine MRI.
Shell, the doctor isn't looking for anything. He only requested these tests because I yelled at him. He thinks that my old lesion is causing these symptoms and it was even old in 2001. After this Monday when I meet with him, he and I will be parting ways, since he doesn't seem to be on the right page. I decided yesterday that I needed to get my hands on all of my previous test results, but thanks Shell for reminding me.
My PCP is pretty proactive, but I've only been with him for a year, but he is in the same medical system as the neurologist and the LP and the complete CNS MRI's that have been done this year, so I'm sure that he can get me what I need. The ones from '01 were in Greensboro, NC where I lived for 8 years, and 2003 are in Winston-Salem (those will be harder to track down, but I am persistant and aggravated too, so I should be able to find them too!
Anyway, thanks so much for the information and support. So far, my wife has been fairly invalidating with this episode, so I haven't really been able to talk with anyone consistently.
OperaMBA (Richard)
Hi there,
Well, you sure have been going through a lot. I'd like to say hello, and welcome, and have a couple add ons to Rena and Janette's responses.
Question for you: What did they study with MRI - Brain? C-Spine? You posted information about what is going on in the T-spine, but typically MS lesions will show in brain, and the C.
I'm sorry for what you are going though. Please don't get discouraged. Your next step will be important. Do you have copies of these reports? Can you get your hands on them? Think it's time for a timeline. We can help you with that. What did the Dr say he was looking for w/this past LP. You just got another one done so they are working you up and looking for something. What did the Dr. mention?
Sorry for all the question, but it will be easier to help you along with the addt. info.
Thanks for coming along,
You'll like it here,
Shell
Well, you sure have been going through a lot. I'd like to say hello, and welcome, and have a couple add ons to Rena and Janette's responses.
Question for you: What did they study with MRI - Brain? C-Spine? You posted information about what is going on in the T-spine, but typically MS lesions will show in brain, and the C.
I'm sorry for what you are going though. Please don't get discouraged. Your next step will be important. Do you have copies of these reports? Can you get your hands on them? Think it's time for a timeline. We can help you with that. What did the Dr say he was looking for w/this past LP. You just got another one done so they are working you up and looking for something. What did the Dr. mention?
Sorry for all the question, but it will be easier to help you along with the addt. info.
Thanks for coming along,
You'll like it here,
Shell
Welcome to this forum. I started posting here a couple of weeks ago & I can't tell you how much support & Knowledge I have gained from this group. I had an LP done last week & I am also in "limbo land." I am glad that you have a MS specialist close by - maybe they can perform the other testing you need & can give you some answers. Please don't feel alone - many of us have been made to feel like there is not a problem with us but we know our bodies & know when they are not doing what they are to be doing & we are not making it up! Hope to see you around again. Take care
Janette
Janette
Hello there and welcome to the MS Forum! Sure sounds as though you have been dealing with a lot and I think you have come to the right place. We are not physicians so we are unable to diagnose anything but as a rule with the combination of the experiences all of our members have had we can usually help you on your journey to a diagnosis by ensure that all your i's are dotted and your t's are crossed.
First of all I think your best line of defense will be to check out the Health Pages in the upper right hand corner of this page. There is a plethora of information in those pages that will give you the education that you will require to become your own best advocate. This is an important thing to do because as you have stated, many people have to wait years for a diagnosis and part of it can be due to a lack of lesions on MRI. However, once you have had a chance to read this information you will come to the conclusion that lesions have not direct relation to symptoms and although lesions may not be visible on MRI, you can very well have MS and further testing is required to discern whether you have MS or possible one of the many MS Mimics. (please excuse any typos here...I am having a hard time getting the words to my fingers tonight hehe)
Anyway, if you are able to switch to the MS Centre near you and you feel that you "fit" the diagnosis criteria that is mentioned in the Health Pages, I believe that it will be the best move for you. The MS Specialists have the education and experience to deal with the many different "idiosyncracies" (sp?) that all of us seem to have with this disease and they can recognize that we are all different when it comes to this disease.
There are a wonderful group of people here that are all in different phases of MS (i.e. limboland-no diagnosis, diagnosed and being treated, diagnosed and being denied treatment and those that were thought to have MS to begin with but have since been diagnosed with other problems but they choose to stay with us). You will find that we are here pretty much 24/7 (although it has been incredibly slow this weekend) and that if one of us doesn't know the answer to a question, we will either find someone who does, search to find the answer ourselves for you or point you in the direction of where to find the answer to any questions. We are looking forward to getting to know you and although our group has a majority of women, we do have our regular fellas around like Cowboy (gone hunting), McBcon, and Lee just to name a few. We are here to help you whether you need to rant, rave, laugh or cry or just need someone to talk to. Sometimes it is easier to talk to someone on here than our own family or spouse simply because we fully understand how you are feeling and believe you/me...if I don't know how you are feeling at a moment in time there is always someone else that does.
So, please let us know how you make out with the LP results and we can take it from there. It is a good idea if you haven't up till now to try to get copies of all the lab reports, LP reports, MRI copies, x-ray reports and have a file of all this information as it could prove invaluable in the future. We can talk about a timeline at a later date but it is very important for you and your doctors.
Lots of Hugs,
Rena
First of all I think your best line of defense will be to check out the Health Pages in the upper right hand corner of this page. There is a plethora of information in those pages that will give you the education that you will require to become your own best advocate. This is an important thing to do because as you have stated, many people have to wait years for a diagnosis and part of it can be due to a lack of lesions on MRI. However, once you have had a chance to read this information you will come to the conclusion that lesions have not direct relation to symptoms and although lesions may not be visible on MRI, you can very well have MS and further testing is required to discern whether you have MS or possible one of the many MS Mimics. (please excuse any typos here...I am having a hard time getting the words to my fingers tonight hehe)
Anyway, if you are able to switch to the MS Centre near you and you feel that you "fit" the diagnosis criteria that is mentioned in the Health Pages, I believe that it will be the best move for you. The MS Specialists have the education and experience to deal with the many different "idiosyncracies" (sp?) that all of us seem to have with this disease and they can recognize that we are all different when it comes to this disease.
There are a wonderful group of people here that are all in different phases of MS (i.e. limboland-no diagnosis, diagnosed and being treated, diagnosed and being denied treatment and those that were thought to have MS to begin with but have since been diagnosed with other problems but they choose to stay with us). You will find that we are here pretty much 24/7 (although it has been incredibly slow this weekend) and that if one of us doesn't know the answer to a question, we will either find someone who does, search to find the answer ourselves for you or point you in the direction of where to find the answer to any questions. We are looking forward to getting to know you and although our group has a majority of women, we do have our regular fellas around like Cowboy (gone hunting), McBcon, and Lee just to name a few. We are here to help you whether you need to rant, rave, laugh or cry or just need someone to talk to. Sometimes it is easier to talk to someone on here than our own family or spouse simply because we fully understand how you are feeling and believe you/me...if I don't know how you are feeling at a moment in time there is always someone else that does.
So, please let us know how you make out with the LP results and we can take it from there. It is a good idea if you haven't up till now to try to get copies of all the lab reports, LP reports, MRI copies, x-ray reports and have a file of all this information as it could prove invaluable in the future. We can talk about a timeline at a later date but it is very important for you and your doctors.
Lots of Hugs,
Rena
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