Aa
No O-bands in CSF
Finally the Neurologist called me and I was going to ask her if taking a medrol pack would help with my myoclonus and right arm tremor that is obviously still hanging around (day 8). She asked "who prescribed that for you and what indication would make her do so? No that will not help with your tremors. I dont know why you think it would. By the way Im looking at your results of the LP and everything is normal. No O-bands, no EBV, no WBC, etc etc etc. Everything is fine." She was literally cold toward me.
I guess that means I dont have MS which I am thankful for but now Im wondering why Im having what Im having? I mean I dont think there's anymore blood tests or diagnostic tests they can do to rule out anything else. So is this is what I have to deal with everyday?
I swear I feel so lost.
I just want to cry
I guess that means I dont have MS which I am thankful for but now Im wondering why Im having what Im having? I mean I dont think there's anymore blood tests or diagnostic tests they can do to rule out anything else. So is this is what I have to deal with everyday?
I swear I feel so lost.
I just want to cry
I apologize for not seeing these responses and the time and effort you have taken to explain things to me.
All of your comments are greatly appreciated and please do not think for a moment that I am ungrateful.
I must admit, I am totally preoccupied (feeling quite selfish in my own little health world) and not been posting as much.
I was discussing with COBOB privately in regard to my recent MRI. I think what he was stating that they did not perform the MRI to MS protocol. I found this peculiar because I was admitted under the diagnosis of MS exacerbation and wonder why the Neuro did not order the MRI as such? It did not have the sagittal Flair nor the Axial PD T2 (I think that is it). They did 5mm slicing instead of 3mm (although Im not sure if that makes a difference) but I know I was going through something those past 6 days with the myoclonus and right arm tremor. I couldnt even touch my nose and the doctors finger without "quote" "you have intention tremor and dysmetria". My gait was widely based because "I" think because my entire left leg was feeling numb and the hip feels like its dislocated (not sure if its spasms/tightness/cramping).
I just called the hospital medical records and asked them to fax the two forms for me to fill out and I'd bring the signed permission forms to them today. They never fax'd it. So this means I have to drive out to the hospital and go the medical records department myself. Then she told me 75cents per sheet and will take ten days. So I have to hop on that without further ado.
As far as calling the doctors office and asking them to have the MS Neurologist call the laboratory to save whatever CSF fluid I have -- I can do that, but I dont know if they will do so or feel there is a need to do so. If they ask "why" do you want us to do such I would not know how to respond.
FYI -- Yesterday was the best day I have had in 10 months. No fatigue during the day, my left leg felt quite normal, my gait was good, no right arm tremor that lasted 6 to 7 days, myoclonus was practically gone, no paresthesia. It is times like this when I feel like nothing is wrong and its all in my head or something and not to push for diagnosis of something that doesn't exist. However later in the evening I was laying on the loveseat, pillows propping my legs and back (my usual spot) and all of a sudden I had like 5 bursts of electrical shocks on my right shin and twice around the back area. It hurt really bad but it didnt last long. My left hip felt like it was dislocated again and my knees felt like they were popping off took a motrin 800 and slept from 9 to 6:30am. Im fatigued today but nothing like I was before. So Im thankful.
Thank you Jan, Bob, Shelly, Maria, Mary and everyone else for your input and time to respond to me.
Lisa
All of your comments are greatly appreciated and please do not think for a moment that I am ungrateful.
I must admit, I am totally preoccupied (feeling quite selfish in my own little health world) and not been posting as much.
I was discussing with COBOB privately in regard to my recent MRI. I think what he was stating that they did not perform the MRI to MS protocol. I found this peculiar because I was admitted under the diagnosis of MS exacerbation and wonder why the Neuro did not order the MRI as such? It did not have the sagittal Flair nor the Axial PD T2 (I think that is it). They did 5mm slicing instead of 3mm (although Im not sure if that makes a difference) but I know I was going through something those past 6 days with the myoclonus and right arm tremor. I couldnt even touch my nose and the doctors finger without "quote" "you have intention tremor and dysmetria". My gait was widely based because "I" think because my entire left leg was feeling numb and the hip feels like its dislocated (not sure if its spasms/tightness/cramping).
I just called the hospital medical records and asked them to fax the two forms for me to fill out and I'd bring the signed permission forms to them today. They never fax'd it. So this means I have to drive out to the hospital and go the medical records department myself. Then she told me 75cents per sheet and will take ten days. So I have to hop on that without further ado.
As far as calling the doctors office and asking them to have the MS Neurologist call the laboratory to save whatever CSF fluid I have -- I can do that, but I dont know if they will do so or feel there is a need to do so. If they ask "why" do you want us to do such I would not know how to respond.
FYI -- Yesterday was the best day I have had in 10 months. No fatigue during the day, my left leg felt quite normal, my gait was good, no right arm tremor that lasted 6 to 7 days, myoclonus was practically gone, no paresthesia. It is times like this when I feel like nothing is wrong and its all in my head or something and not to push for diagnosis of something that doesn't exist. However later in the evening I was laying on the loveseat, pillows propping my legs and back (my usual spot) and all of a sudden I had like 5 bursts of electrical shocks on my right shin and twice around the back area. It hurt really bad but it didnt last long. My left hip felt like it was dislocated again and my knees felt like they were popping off took a motrin 800 and slept from 9 to 6:30am. Im fatigued today but nothing like I was before. So Im thankful.
Thank you Jan, Bob, Shelly, Maria, Mary and everyone else for your input and time to respond to me.
Lisa
I saw the revision - I just feel she was getting such a run around that I wanted her to understand what some of the doctor's thinking is. To have them so slam dunk you is hard and knowing the whys is helpful - at least it is at times to me. I hadn't seen diagnostic clinical signs other than the opening post in this thread that would establish the diagnosis - so I offered the time and space way of looking at things.
Of course if your clinical picture is very indicative of ms - there are now less stringent criteria put on MRIs. I'm involved in Rasmussen's Encephalitis right now - and talk about these exact issues coming into play! I'm ready to scream. The consequences are so serious.
Basically, we all want diagnosis as soon as possible - but we want it to be accurate - not rushed into.
I so wish everyone the best. Thanks for keeping up to date with all these criteria.
Blessings, Jan
Of course if your clinical picture is very indicative of ms - there are now less stringent criteria put on MRIs. I'm involved in Rasmussen's Encephalitis right now - and talk about these exact issues coming into play! I'm ready to scream. The consequences are so serious.
Basically, we all want diagnosis as soon as possible - but we want it to be accurate - not rushed into.
I so wish everyone the best. Thanks for keeping up to date with all these criteria.
Blessings, Jan
This whole think about a positive LP needs to be understood from a number perspective. If there are 400,000 PwMS in the US, 40,000 of them will have a negative LP! When you say 10% of people may not have any o-bands, it seems to lack the same impact that 40,000 PwMS in the US don't have unique O-Bands in their CSF.
Positive LPs really help a neuro in diagnosing MS. Negative LP really don't help in ruling out MS.
As far as the 2010 Revised McDonald Criteria, I couldn't care how many times they revise it or tweak it. It seems that many of the Neuros out there have never read it to the point of understanding the criteria. Maybe if they update it every year, some of these folks will get a clue. My point in what I posted is that Periventricular lesions alone do not satisfy DIS based on MRI alone. You must have lesions in 2 of the 4 areas to meet DIS based on MRI. Now if you loose the use of your right lower leg and two months later get optic neuritis, that satisfies DIS and DIT by clinical findings.
Bob
Positive LPs really help a neuro in diagnosing MS. Negative LP really don't help in ruling out MS.
As far as the 2010 Revised McDonald Criteria, I couldn't care how many times they revise it or tweak it. It seems that many of the Neuros out there have never read it to the point of understanding the criteria. Maybe if they update it every year, some of these folks will get a clue. My point in what I posted is that Periventricular lesions alone do not satisfy DIS based on MRI alone. You must have lesions in 2 of the 4 areas to meet DIS based on MRI. Now if you loose the use of your right lower leg and two months later get optic neuritis, that satisfies DIS and DIT by clinical findings.
Bob
Oh dear its pants isnt it.
I had positive VEP (bilateral optical neuritis (both eyes), lesions on my MRI, and on my LP I had over 15 o bands BUT because they found inflammation showing in the blood test they took at the same time, they have discounted MS for me....so I havent got a clue what is wrong.
A few months back I had the nettle rash really bad in my hands (feels like I put my hand in nettles horrible), and my left thumb went numb for 3 days.
I thought I might have trapped a nerve in my neck so paid to have a T3 MRI.
The neuro said no nerve problem but the radiologist found that my bone marrow is working to hard and suggested I had blood tests and urine tests.
Whatever that means or why that should be I have no idea.
I am just fed up with being ill all the time.....its ongoing battle. The pain is a nightmare.
I really feel for you.
I just feel like giving up right now.
Big hugs Mariaxxx
I had positive VEP (bilateral optical neuritis (both eyes), lesions on my MRI, and on my LP I had over 15 o bands BUT because they found inflammation showing in the blood test they took at the same time, they have discounted MS for me....so I havent got a clue what is wrong.
A few months back I had the nettle rash really bad in my hands (feels like I put my hand in nettles horrible), and my left thumb went numb for 3 days.
I thought I might have trapped a nerve in my neck so paid to have a T3 MRI.
The neuro said no nerve problem but the radiologist found that my bone marrow is working to hard and suggested I had blood tests and urine tests.
Whatever that means or why that should be I have no idea.
I am just fed up with being ill all the time.....its ongoing battle. The pain is a nightmare.
I really feel for you.
I just feel like giving up right now.
Big hugs Mariaxxx
Lisa!
My gosh - keep that appt., woman. 3 days is way off. Definitely get a hold of the report - I 2nd all that twopack Mary says.
While the 2010 criteria recommendations further define dissemination in time and space, and CIS, those recommendations were made well before 2010 so please understand all that those guidelines have been in practice well before this recent publishing.
3-day O-band testing is seriously remarkable. I'll admit I'm a skeptic, as should be your ordering neuro. With the report in hand, you'll be able to read the technique used to sort the o-bands. The specialist will do the same.
And, yes, while they need blood serum to compare to csf and identify the origination and uniqueness of the o-bands, they absolutely can count o-bands w/out serum. They just would not be able to confirm they were of CNS origin and uniqueness w/out the serum.
If the office of the specialist was willing to call that lab. The lab could hold your csf longer than standard just by chance the MS specialist wants some additional testing. If the lab has enough csf to perform additional testing - they will do that.
Would you be willing to call the new office and mention this? I'm scheduled to see doctor so-and-so on 05 May, I recently had an LP performed at such and such facility. In order to not have a repeat of that test, would doctor so-and-so be willing to call the facility to ensure my csf fluid is not disgarded by chance it's needed for additional testing?
Sorry to say so much, but csf fluid is not always an easy get - and if there is enough, new doc can order a test done in a specific manner.
-shell
My gosh - keep that appt., woman. 3 days is way off. Definitely get a hold of the report - I 2nd all that twopack Mary says.
While the 2010 criteria recommendations further define dissemination in time and space, and CIS, those recommendations were made well before 2010 so please understand all that those guidelines have been in practice well before this recent publishing.
3-day O-band testing is seriously remarkable. I'll admit I'm a skeptic, as should be your ordering neuro. With the report in hand, you'll be able to read the technique used to sort the o-bands. The specialist will do the same.
And, yes, while they need blood serum to compare to csf and identify the origination and uniqueness of the o-bands, they absolutely can count o-bands w/out serum. They just would not be able to confirm they were of CNS origin and uniqueness w/out the serum.
If the office of the specialist was willing to call that lab. The lab could hold your csf longer than standard just by chance the MS specialist wants some additional testing. If the lab has enough csf to perform additional testing - they will do that.
Would you be willing to call the new office and mention this? I'm scheduled to see doctor so-and-so on 05 May, I recently had an LP performed at such and such facility. In order to not have a repeat of that test, would doctor so-and-so be willing to call the facility to ensure my csf fluid is not disgarded by chance it's needed for additional testing?
Sorry to say so much, but csf fluid is not always an easy get - and if there is enough, new doc can order a test done in a specific manner.
-shell
The McDonald Criteria has been revised again (2010). It still allows for clinical diagnosis based on signs and symptoms without any MRI evidence, but now defines how MRI evidence can be used to satisfy dissemination in space and time.
The current version of the criteria requires one or more T2 lesion in at least 2 of the following areas: Periventricular, Juxtacortical, Infratentorial, and Spinal cord. Here is a link to the current Criteria:
http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/pdf
Bob
The current version of the criteria requires one or more T2 lesion in at least 2 of the following areas: Periventricular, Juxtacortical, Infratentorial, and Spinal cord. Here is a link to the current Criteria:
http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/pdf
Bob
Hi Lisa,
I just got through writing a post indicating my frustration as well. It was interesting to go straight to yours and feel as though it was a continuation of thought!
First, let me say, I can empathize very well with all you are going through. My MS came as a late dx, but due to already having many other dx that docs tried to plug all my neuro symptoms in - the proper tests weren't done. An MRI in 2004 said probable demyelating disease and said need follow up, but that's the one MRI I didn't have a copy of and it was never mentioned to me - even though I had Trigemiinal Neuralgia and parasthesias and you name it. (4 years later I was surprised by a dx)
Second, you said that you were sent for your Spinal Tap (had one today for something else) and I think you meant VEP tests and all were normal. BUT - when the clinical picture is NOT normal AND your MRI are not normal - it is necessary to follow up.
You casually mentioned in a later post in this thread that your "MRI just said periventricular White Matter Lesions - T2 hyperintense - non specific - and without enhancement with contrast" (paraphrase) What this means is that you have lesions very consistent with MS - not specific, but consistent. Lesions in the White Matter is where MS lesions are - especially in the periventricular area - areas where the myelin sheath surrounding the nerve cells has been partially or completely destroyed. This slows down the conduction of nerve impulses - sometimes stopping them altogether , which is what causes the disability and/or pain.
What you will need for a follow up is another MRI. To dx MS, the MRI must show lesions in more than one spot in the CNS - Brain, Spinal Cord, or Optic Nerve. These lesions have to have occurred over time, showing a non static disease. There are changes going on. One lesions may be active, causing destruction (shows up as enhancing) and another as fading - it did damage and now might even be improving or at least not showing current worsening. Non enhancing merely means that at the time of your MRI you had no new lesions that were actively causing destruction - NOT that you hadn't had them.
Your MD is correct to keep your case open and before the neuros. My advise to you, which many will agree to here - keep a journal or all your symptoms - describing how they feel, and for how long, and where located etc. Also keep copies of every single test - lab, scan, consultation letters - everything. It helps you and any future doctor you may see. Even if it seems unrelated - write it down.
I wish you the best. I've been through a lot and know how frustrating doctors can be sometimes - but like any job - there are personality types, and different levels of expertise. TRY not to take it personally (HARD), and listen to your own body. Just also keep living and being thankful for each day.
Blessings, Jan
I just got through writing a post indicating my frustration as well. It was interesting to go straight to yours and feel as though it was a continuation of thought!
First, let me say, I can empathize very well with all you are going through. My MS came as a late dx, but due to already having many other dx that docs tried to plug all my neuro symptoms in - the proper tests weren't done. An MRI in 2004 said probable demyelating disease and said need follow up, but that's the one MRI I didn't have a copy of and it was never mentioned to me - even though I had Trigemiinal Neuralgia and parasthesias and you name it. (4 years later I was surprised by a dx)
Second, you said that you were sent for your Spinal Tap (had one today for something else) and I think you meant VEP tests and all were normal. BUT - when the clinical picture is NOT normal AND your MRI are not normal - it is necessary to follow up.
You casually mentioned in a later post in this thread that your "MRI just said periventricular White Matter Lesions - T2 hyperintense - non specific - and without enhancement with contrast" (paraphrase) What this means is that you have lesions very consistent with MS - not specific, but consistent. Lesions in the White Matter is where MS lesions are - especially in the periventricular area - areas where the myelin sheath surrounding the nerve cells has been partially or completely destroyed. This slows down the conduction of nerve impulses - sometimes stopping them altogether , which is what causes the disability and/or pain.
What you will need for a follow up is another MRI. To dx MS, the MRI must show lesions in more than one spot in the CNS - Brain, Spinal Cord, or Optic Nerve. These lesions have to have occurred over time, showing a non static disease. There are changes going on. One lesions may be active, causing destruction (shows up as enhancing) and another as fading - it did damage and now might even be improving or at least not showing current worsening. Non enhancing merely means that at the time of your MRI you had no new lesions that were actively causing destruction - NOT that you hadn't had them.
Your MD is correct to keep your case open and before the neuros. My advise to you, which many will agree to here - keep a journal or all your symptoms - describing how they feel, and for how long, and where located etc. Also keep copies of every single test - lab, scan, consultation letters - everything. It helps you and any future doctor you may see. Even if it seems unrelated - write it down.
I wish you the best. I've been through a lot and know how frustrating doctors can be sometimes - but like any job - there are personality types, and different levels of expertise. TRY not to take it personally (HARD), and listen to your own body. Just also keep living and being thankful for each day.
Blessings, Jan
Not normal, but they could. About 6-8 hours for gel separation and 24 hours to focus and then staining would take some time. If everything lined up right, it could get done in 2 days.
Bob
Bob
The laboratory tech at the hospital I was at told me both serum and CSF are sent out. That's all I know. But what I'm asking is -- can they do an IEF in 3 days time span? I mean is that normal?
If they don't have a serum sample to to go with the CSF, they can not test for O Bands. By the way, the O Bands test was over a thousand bucks. Not a cheap test. You should expect that they do it correctly. I know ARUP will not accept CSF for IEF testing without a serum tube. Both have to be properly refrigerated or the refuse the specimen for testing.
Bob
Bob
Detailed report there Bob. If yours took weeks, then why was mine done in 3 days? Would it be your guess that an IEF wasn't done? Should I call the laboratory and asked them where they sent the CSF specimen and serum blood?
I'm not sure how hard I should pursue this? I know I definitely offended the Neuro when I left the message with the secretary stating that I wanted to make sure she did a serum blood draw with at least my am labs prior to the LP and she never called back. I had to call her twice today to return my call. And the rest of the story you know.
Hmmmm
I'm not sure how hard I should pursue this? I know I definitely offended the Neuro when I left the message with the secretary stating that I wanted to make sure she did a serum blood draw with at least my am labs prior to the LP and she never called back. I had to call her twice today to return my call. And the rest of the story you know.
Hmmmm
I waited weeks for my IEF results from the Uinv of Utah Referenca Lab. They freeze the CSF and blood and wait until they have enough sample to set up a run. This is not a "kit test."
This requires a lot of individual parts pH Gels, so the immuno proteins separate and then electricity to to "focus" the bands. Serum and CSF are run side by side. This is real Lab work. I wouldn't be surprised if it took a month for results to come back.
OCB Results look like this:
------------------------------------------
Collected: 7/30/2010 9:12 AM
Resulted: 8/15/2010 7:39 AM
Ordered By: Historical Conversion Provider
Result Status:
Final result
Component Your Value Standard Range Units
IMMUNOGLOBIULIN G, SERUM 1110 768 - 1632 milligrams per deciliter
MMUNOGLOBIULIN G, CSF 4.5 0.0 - 6.0 milligrams per deciliter
ALBUMIN, SERUM 4010 3500 - 5200 milligrams per deciliter
ALBUMIN, CSF 34 0 - 35 milligrams per deciliter
ALBUMIN INDEX 8.5 0.0 - 9.0 ratio
IMMUNOGLOBULIN G INDEX 0.48 0.28 - 0.66 ratio
CSF IGG/ALBUMIN RATIO 0.13 0.09 - 0.25 ratio
CSF OLIGOCLONAL BANDS Negative Negative
CSF IGG SYNTHESIS RATE <0.0 <=8.0 mg/D
OLIGOCLONAL BANDING INTERPRET See Note
As compared to the serum, isoelectric
focusing/immunofixation reveals 0 IgG band(s) that is(are)
unique to the CSF. This is considered to be a negative
result for oligoclonal bands. A small percentage of
patients with clinically definitive MS have a negative
result.
Performed by ARUP Laboratories,
500 Chipeta Way, SLC,UT 84108 800-522-2787
www.aruplab.com, Sherrie L. xxxxxxx, MD - Lab. Director
Bob
This requires a lot of individual parts pH Gels, so the immuno proteins separate and then electricity to to "focus" the bands. Serum and CSF are run side by side. This is real Lab work. I wouldn't be surprised if it took a month for results to come back.
OCB Results look like this:
------------------------------------------
Collected: 7/30/2010 9:12 AM
Resulted: 8/15/2010 7:39 AM
Ordered By: Historical Conversion Provider
Result Status:
Final result
Component Your Value Standard Range Units
IMMUNOGLOBIULIN G, SERUM 1110 768 - 1632 milligrams per deciliter
MMUNOGLOBIULIN G, CSF 4.5 0.0 - 6.0 milligrams per deciliter
ALBUMIN, SERUM 4010 3500 - 5200 milligrams per deciliter
ALBUMIN, CSF 34 0 - 35 milligrams per deciliter
ALBUMIN INDEX 8.5 0.0 - 9.0 ratio
IMMUNOGLOBULIN G INDEX 0.48 0.28 - 0.66 ratio
CSF IGG/ALBUMIN RATIO 0.13 0.09 - 0.25 ratio
CSF OLIGOCLONAL BANDS Negative Negative
CSF IGG SYNTHESIS RATE <0.0 <=8.0 mg/D
OLIGOCLONAL BANDING INTERPRET See Note
As compared to the serum, isoelectric
focusing/immunofixation reveals 0 IgG band(s) that is(are)
unique to the CSF. This is considered to be a negative
result for oligoclonal bands. A small percentage of
patients with clinically definitive MS have a negative
result.
Performed by ARUP Laboratories,
500 Chipeta Way, SLC,UT 84108 800-522-2787
www.aruplab.com, Sherrie L. xxxxxxx, MD - Lab. Director
Bob
Jesus -- I'm sorry about your experience...I think I would have said something honestly and not hold my tongue to that specific doctor. Im glad you can still walk too. Sheesh.
Thank you for your support -- I appreciate it.
Lisa
Thank you for your support -- I appreciate it.
Lisa
The LP was done on Monday -- I remember the laboratory saying that they sent the CSF "out". To where I don't know but I got the results today. So that's three days later.
Is that the normal time for results to come back for the IEF?
Is that the normal time for results to come back for the IEF?
The cell counts, protein, glucose, IgG, EBV titer, etc. can all be done in a local hospital lab. IEF requires special supplies and techniques (like applying 500-700 Volts DC to the pH gradient Gel for 16-24 hours.)
Even the University of Colorado Hospital sends this out t one of a few US labs that do this. Mayo and University of Utah are two reference labs that I know of.
Most hospital labs can do 2D electrophoresis, but not IEF.
Bob
Even the University of Colorado Hospital sends this out t one of a few US labs that do this. Mayo and University of Utah are two reference labs that I know of.
Most hospital labs can do 2D electrophoresis, but not IEF.
Bob
oh man - I had to go completely outside my pcp's group to finally get diagnosed. It seemed as if he was circumventing my care. I got the coldshoulder treatment from everyone hooked to the Lahey computer system. Keep on truckin. Keep at it until you find out what is wrong. I had 15 O-bands in my fluid when they finally cracked it, and I did move away from my Primary Care to get it done. He called me to find out what was going on, and even when I accused him of ignoring test results (I also asked for a handicaped plate last year which he marked temp, and when I confronted him about that he simply told me he was hoping whatever it was would resolve) he backpedaled and said no he hadn't, but the lesion on my spinal cord was found last year and he told me we were just gonna sit and watch what happened. I decided I wasn't going to sit until it was all I could do. At least I can still walk.
@ Laura: Thank you for your words of encouragement. I agree, at least its not MS but now Im in the undiagnosed pool. I suppose I should wait until I see a MSologist -- but now Im not sure whether or not I should have this appointment. Why go if the regular Neurologist from the MSologist's office feels that its not? And my primary MD who thought for sure it was -- her cohort who's covering for her while she's on vacation feels that its not either, especially with nonspecific WML's in the periventricular region.
@Julie: I ended up with this Neuro because she's in the Neurology group where my Primary wanted me to see the MSologist. They are in the same practice and she was covering over the weekend while I was in the hospital.
Im still waiting for my old Neuro to call me back today -- normally he calls after office hours. I'll ask him what he thinks or who he thinks I can see who will accept my medicaid insurance. I guess I'll have to go from there.
Thank you both for your responses.
@Julie: I ended up with this Neuro because she's in the Neurology group where my Primary wanted me to see the MSologist. They are in the same practice and she was covering over the weekend while I was in the hospital.
Im still waiting for my old Neuro to call me back today -- normally he calls after office hours. I'll ask him what he thinks or who he thinks I can see who will accept my medicaid insurance. I guess I'll have to go from there.
Thank you both for your responses.
You are doing all the right things and the others have suggested additional tasks that are needed to move forward with this.
Just curious: How did you end up with this neuro? I might have missed that part of your story. My first neurologist was a hospital neuro - general neruo at that. I saw him as an out-patient and had some of the same issues you had with this current doc of yours.
I ended up with a referral and the neuro I was referred to was the one who diagnosed me.
Had I stopped with that first neuro and had no strength to keep moving, I would be in a much worse place right now as far as progression. Lesson learned: Don't give up. It doesn't sound like you plan on doing that. You are a smart lady. Let us know how it turns out.
WIshing you the best.
Julie
Just curious: How did you end up with this neuro? I might have missed that part of your story. My first neurologist was a hospital neuro - general neruo at that. I saw him as an out-patient and had some of the same issues you had with this current doc of yours.
I ended up with a referral and the neuro I was referred to was the one who diagnosed me.
Had I stopped with that first neuro and had no strength to keep moving, I would be in a much worse place right now as far as progression. Lesson learned: Don't give up. It doesn't sound like you plan on doing that. You are a smart lady. Let us know how it turns out.
WIshing you the best.
Julie
I am sorry you got no answers. I hear you! I am waiting for my results from my LP and VEP and SSEP. I am almost more afraid of them being normal than of something being wrong. I know I am sick and it is scary to know that and not to have an answer and treatment. But, on the other hand, MS is a terrible disease so, if the results are negative, at least maybe it is something that it is easier to treat if/when discovered. Do not give up the search.
Laura
Laura
@Mary:
I was about to call her back and ask her if there was any reason to continue with my appointment with the (MSologist). Because at the end of our conversation she asked me do I have an appointment to see him and I said yes on May 4th.
You're right -- this is so mind blowing in the way Im being treated it is sickening. Perhaps because now Im a "medicaid" patient so I don't deserve the courtesy, compassion, understanding of what Im going through. I told her that I still have the myoclonic activity and the right arm tremors and its day "8" now. She disregarded the myoclonus and kept on saying, "No the medrol pack won't help with your tremors. I dont know why your primary prescribed it in the first place." I was afraid to tell her that my primary is the one who felt I had MS, urged me multiple times to go to the ER during my episodes of neurological issues and to go to the MSologist. I have taken the medrol pack once before or even twice before when I had serious issues with my left leg/hip (feeling like subluxation) and it appeared to have helped. (although it could have been coincidental too). So the tone and the way she was speaking to me is that I have a feeling she does not think this is MS and I was afraid to say to her that is the reason why my primary prescribed me that.
She was reading off from the computer at the hospital I was at. They sent it out but obviously to a local laboratory for results to come back that quick. I mean the day after I spoke to my primary MD's cohort and he read off some of the results from the LP the next day (wbc's, fungus, ebv, culture, no cancerous cells, etc).
She also told me that my BAER and VER came back normal. "Everything is normal". I felt like she was acting as though Im making this **** up or Im doing it on purpose.
I placed a call to my old Neurologist who first ordered my MRI of brain and cspine due to ataxia and memory issues but alas, he does not accept medicaid. I cried then because honestly I do trust him, even if he is not a MSologist. So I asked the secretary to have him call me back today and perhaps he can direct me to someone who he knows excepts medicaid and will do me justice. I somehow do not like this practice already. The purpose of me going into the ER in the first place was the primary MD's idea that the MSologist would see me as an inpatient. He never came. I just got a beeootch as far as Im concerned.
Im going to wait for him to call and see if he has any suggestions of anyone I can see. I trust him enough to send me to someone who would do right by me. Then if he has someone in mind and they do accept my "medicaid" then I will obtain the MRI, all the blood work, BAER and VER and the LP results. And go from there.
Thank you Mary...I cant stop myself from periodically breaking into tears. I know now what it feels like to feel helpless and hopeless in the care of @$$holes. Excuse my language but Im upset.
@ Candy:
My MRI only shows periventricular WML's that are nonspecific and t2 hyperintense. Nothing else. No ehancement during the Omniscan administration.
I'll do as Mary says and go to the hospital tomorrow and obtain the records I need. Im sure I have to go and sign for everything.
Thank you both...for listening.
I was about to call her back and ask her if there was any reason to continue with my appointment with the (MSologist). Because at the end of our conversation she asked me do I have an appointment to see him and I said yes on May 4th.
You're right -- this is so mind blowing in the way Im being treated it is sickening. Perhaps because now Im a "medicaid" patient so I don't deserve the courtesy, compassion, understanding of what Im going through. I told her that I still have the myoclonic activity and the right arm tremors and its day "8" now. She disregarded the myoclonus and kept on saying, "No the medrol pack won't help with your tremors. I dont know why your primary prescribed it in the first place." I was afraid to tell her that my primary is the one who felt I had MS, urged me multiple times to go to the ER during my episodes of neurological issues and to go to the MSologist. I have taken the medrol pack once before or even twice before when I had serious issues with my left leg/hip (feeling like subluxation) and it appeared to have helped. (although it could have been coincidental too). So the tone and the way she was speaking to me is that I have a feeling she does not think this is MS and I was afraid to say to her that is the reason why my primary prescribed me that.
She was reading off from the computer at the hospital I was at. They sent it out but obviously to a local laboratory for results to come back that quick. I mean the day after I spoke to my primary MD's cohort and he read off some of the results from the LP the next day (wbc's, fungus, ebv, culture, no cancerous cells, etc).
She also told me that my BAER and VER came back normal. "Everything is normal". I felt like she was acting as though Im making this **** up or Im doing it on purpose.
I placed a call to my old Neurologist who first ordered my MRI of brain and cspine due to ataxia and memory issues but alas, he does not accept medicaid. I cried then because honestly I do trust him, even if he is not a MSologist. So I asked the secretary to have him call me back today and perhaps he can direct me to someone who he knows excepts medicaid and will do me justice. I somehow do not like this practice already. The purpose of me going into the ER in the first place was the primary MD's idea that the MSologist would see me as an inpatient. He never came. I just got a beeootch as far as Im concerned.
Im going to wait for him to call and see if he has any suggestions of anyone I can see. I trust him enough to send me to someone who would do right by me. Then if he has someone in mind and they do accept my "medicaid" then I will obtain the MRI, all the blood work, BAER and VER and the LP results. And go from there.
Thank you Mary...I cant stop myself from periodically breaking into tears. I know now what it feels like to feel helpless and hopeless in the care of @$$holes. Excuse my language but Im upset.
@ Candy:
My MRI only shows periventricular WML's that are nonspecific and t2 hyperintense. Nothing else. No ehancement during the Omniscan administration.
I'll do as Mary says and go to the hospital tomorrow and obtain the records I need. Im sure I have to go and sign for everything.
Thank you both...for listening.
Hi,
my evoked potentials, and my LP came back supposedly normal, and 2 years later, they diagnosed me with progressive MS. You don't have to have all those other things to have MS, and the tremor, well I have had it for over 2 years, and nothing helps it, is just does it own thing, and we learn to live with it.
I would for sure insist on your Dr. listening to you, they do seem cold and uncaring, all of us have been there, for sure. I don't know what school they went to, but they need more training.
Sorry that you are going through all of this, it is hard, for sure. and I agree with twopack,
everything is NO FINE !!!!!
What about your MRI's.?? what do they show, and like two pack said, keep copies, and start making a file for yourself, it will help, especially if you have to change Dr. or share information.
take care,
and good luck, keep us posted,
Candy
my evoked potentials, and my LP came back supposedly normal, and 2 years later, they diagnosed me with progressive MS. You don't have to have all those other things to have MS, and the tremor, well I have had it for over 2 years, and nothing helps it, is just does it own thing, and we learn to live with it.
I would for sure insist on your Dr. listening to you, they do seem cold and uncaring, all of us have been there, for sure. I don't know what school they went to, but they need more training.
Sorry that you are going through all of this, it is hard, for sure. and I agree with twopack,
everything is NO FINE !!!!!
What about your MRI's.?? what do they show, and like two pack said, keep copies, and start making a file for yourself, it will help, especially if you have to change Dr. or share information.
take care,
and good luck, keep us posted,
Candy
Everything is fine? EVERYTHING IS FINE??
Has she forgotten that her patient is NOT FINE?
See, this is what I was talking about. A fine test is fine only if it is the test being tested. A fine test indicates nothing about how Lisa is doing.
Get a copy of the LP report Lisa. I'm not convinced this is the entire report. Your hospital said they resourced out the test for O-bands. It usually takes longer than this for those results to be reported.
If you haven't already done so, I'd get copies of all your tests, CDs of all your brain and spinal MRIs, and copies of consult reports. When you are sure you have gathered everything there is you need to sit down and think this out (alone or with a good listening ear volunteer). Think about diagnosis, treatment, symptom management and possible care providers. It seems time for you to regroup and plan phase II.
Mary
Has she forgotten that her patient is NOT FINE?
See, this is what I was talking about. A fine test is fine only if it is the test being tested. A fine test indicates nothing about how Lisa is doing.
Get a copy of the LP report Lisa. I'm not convinced this is the entire report. Your hospital said they resourced out the test for O-bands. It usually takes longer than this for those results to be reported.
If you haven't already done so, I'd get copies of all your tests, CDs of all your brain and spinal MRIs, and copies of consult reports. When you are sure you have gathered everything there is you need to sit down and think this out (alone or with a good listening ear volunteer). Think about diagnosis, treatment, symptom management and possible care providers. It seems time for you to regroup and plan phase II.
Mary
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