Aa
Questions
Hi everyone. Hope you are all doing good. I have a couple questions.
1. None of my MRIs except one I did in the US was done using MS protocol and the spinal tap was not done properly as no blood was drawn and tested to see if the serum contained O bands. There is still the question of whether I have MS or APS and the spinal tap has been the deciding factor leaning towards MS as it showed Obands. However it is not known if they were only in my CSF due to not testing the blood. My question is if I have the spinal tap repeated properly would it still show Obands if it is MS. My lesions are in my spine and 2 seen in the brain. My problem is mainly my limbs with sensory and motor symptoms such as bilateral numbness and footdrop, spasms weakness etc.
2. I have been having episodes of derealization, light headedness and my therapist told me today to ask my doctor if it is MS related. I see her for PTSD.
Thank you.
1. None of my MRIs except one I did in the US was done using MS protocol and the spinal tap was not done properly as no blood was drawn and tested to see if the serum contained O bands. There is still the question of whether I have MS or APS and the spinal tap has been the deciding factor leaning towards MS as it showed Obands. However it is not known if they were only in my CSF due to not testing the blood. My question is if I have the spinal tap repeated properly would it still show Obands if it is MS. My lesions are in my spine and 2 seen in the brain. My problem is mainly my limbs with sensory and motor symptoms such as bilateral numbness and footdrop, spasms weakness etc.
2. I have been having episodes of derealization, light headedness and my therapist told me today to ask my doctor if it is MS related. I see her for PTSD.
Thank you.
Hi JJ, thanks for taking the time to read everything and to respond. Thanks also for the hug. Believe me I need it. It has been very hard for me to deal with the symptoms plus other health issues, the PTSD and the nightmare dealing with the doctors here.
At the appointment at the MS clinic Aug 2014, I did not plan on telling them I had seen anyone in the US as I did not want it to have any bearing on their decision. However the NP was the only one I saw. She asked if I had done anymore MRIs and I did not want to lie so I told her yes and that it was ordered by a neuro in the US. She asked what was the outcome and I told her he said I did have MS.
Yes, there is no mistake that I was dismissed by the MS clinic due to the positive aPL test. I got real ill June 2012 and was hospitalised and did the MRIs and LP at that time. I was then referred to the MS clinic. I saw them
October 2012, July 2013, October 2013 and the last visit August 2014. I was examined by the MS neuro only at the July 2013 visit and the other times by the NP. He did not even see me at the August 2014 visit. I was the last patient for the day and when the NP went to talk to him he had already left. I was like wow! I am that unimportant!
They did the aPL test July 2013 and October 2013. After the October 2013 visit a letter was sent to my PCP a week later and she called me. Below is what it said in part.
" Antiphospholipid antibodies were moderately positive. I am repeating the test today and if that is positive, I would advise her Family Doctor to consider the alternative diagnosis of an antiphospholipid antibody syndrome or referral to a hematologist for further assessment.
As a note on the side, we are undergoing some restructuring courtesy of cuts to the system and will no longer be able to provide any type of primary care or symptom management for patients who do not have MS or are not from our catchment area. We will rely on you for further assistance in management on cases like these and we thank you in advance for your understanding and cooperation.
NB: AT THE TIME OF SIGNING THIS NOTE HER HTLV 1-2 ARE NEGATIVE BUT HER APLA ARE POSITIVE AGAIN. PLEASE FOLLOW UP OR CONSULT HEMATOLOGY AS YOU SEE FIT. THANK YOU."
Interestingly after the July 2013 visit the consult notes said the diagnosis was Spinal MS. I never heard of spinal MS. And I have no idea why I got an appointment for Aug 2014 after that letter. Maybe computer generated? I got the letter with the usual form to fill out telling how one was managing etc with MS. I did not ask why were they seeing me again when I went to the appt.
My PCP is trying to get me a hematologist which might mean travelling up to 4 hours. I am thinking that worst case scenario is I have both MS and APS which some people do have. I will go and see the neuro in the US as soon as I can. I am literally sick and tired. Thanks again.
At the appointment at the MS clinic Aug 2014, I did not plan on telling them I had seen anyone in the US as I did not want it to have any bearing on their decision. However the NP was the only one I saw. She asked if I had done anymore MRIs and I did not want to lie so I told her yes and that it was ordered by a neuro in the US. She asked what was the outcome and I told her he said I did have MS.
Yes, there is no mistake that I was dismissed by the MS clinic due to the positive aPL test. I got real ill June 2012 and was hospitalised and did the MRIs and LP at that time. I was then referred to the MS clinic. I saw them
October 2012, July 2013, October 2013 and the last visit August 2014. I was examined by the MS neuro only at the July 2013 visit and the other times by the NP. He did not even see me at the August 2014 visit. I was the last patient for the day and when the NP went to talk to him he had already left. I was like wow! I am that unimportant!
They did the aPL test July 2013 and October 2013. After the October 2013 visit a letter was sent to my PCP a week later and she called me. Below is what it said in part.
" Antiphospholipid antibodies were moderately positive. I am repeating the test today and if that is positive, I would advise her Family Doctor to consider the alternative diagnosis of an antiphospholipid antibody syndrome or referral to a hematologist for further assessment.
As a note on the side, we are undergoing some restructuring courtesy of cuts to the system and will no longer be able to provide any type of primary care or symptom management for patients who do not have MS or are not from our catchment area. We will rely on you for further assistance in management on cases like these and we thank you in advance for your understanding and cooperation.
NB: AT THE TIME OF SIGNING THIS NOTE HER HTLV 1-2 ARE NEGATIVE BUT HER APLA ARE POSITIVE AGAIN. PLEASE FOLLOW UP OR CONSULT HEMATOLOGY AS YOU SEE FIT. THANK YOU."
Interestingly after the July 2013 visit the consult notes said the diagnosis was Spinal MS. I never heard of spinal MS. And I have no idea why I got an appointment for Aug 2014 after that letter. Maybe computer generated? I got the letter with the usual form to fill out telling how one was managing etc with MS. I did not ask why were they seeing me again when I went to the appt.
My PCP is trying to get me a hematologist which might mean travelling up to 4 hours. I am thinking that worst case scenario is I have both MS and APS which some people do have. I will go and see the neuro in the US as soon as I can. I am literally sick and tired. Thanks again.
COMMUNITY LEADER
oops sorry i forgot to also recommend still following through with getting the APS looked into. If the eternal medicine doctor in Canada was suppose to arrange the hema referral, 'repeatedly' speaking to him/her about making this happen might help move it along.....if not i'd try getting an hema appointment through some other means, if you can you make an appointment with out needing a referal id try that too.
COMMUNITY LEADER
I am so very sorry for the ridiculous and gob smacking sh!ty treatment you've had to go through, my heads spinning and i've only read about it, living it must be dam hard............hugs!
To me it looks like the US neuro was very sure you have MS based on more than just the LP, he suspected PPMS but definitely wanted you to start a DMD straight away and start symptom treatments. Initially starting out with a dx of RRMS and taking one of the DMD's, is pretty standard practice because RRMS is the most common (80%) and it usually takes some time to distinguish which of the progressive types it actually is. There is nothing written that 'could' indicate he was 'still' considering anything else but MS by your last appointment with him, and that's even though he absolutely knew about the APS!
The MS clinic report reads more like they only changed your pre-existing TM dx to a 'possible PPMS' for the time being, PPMS wouldn't require any changes in your treatment plan, which isn't a firm PPMS dx but a maybe. In truth, because the clinic report doesn't any where mention, you already had obtained a confirmed dx of MS from the US, i interpret it to mean the clinic was only considering MS (PPMS) at the time that report was written, and were still not convinced on what your final diagnosis was going to turn out to be.
"At this time we have not been able to identify another cause for her TM. She describes progresive neurological worsening over the last 2 years. At this time we can give her a dx of PPMS. This is based on the fact she has 2 lesions in the spinal cord, positive oligoclonal banding, neurological worsening over 12 months and the exclusion of other conditions....."
hmmmmmm are you absolutely positive the MS clinic dismissed you as their patient because of the positive APS tests?
IF you were dismissed, to me it's at odds with them arranging another appointment for you after the dismissal. Only explanation i can fathom is either you were not dismissed and you are still a patient with scheduled appointments or your patient data file was not updated and the appointment is human or an automatic system generated error..........i'd definitely be calling the clinic and finding out what the heck is going on!
[btw i wasn't thinking you were knowledgeable because of google hunting around, sorry if you thought that's what i meant]
grrrrrrrrr head spin on what on earth to say! Okay for what it's worth, i am going to recommend you consider contacting by any means possible, the US neuro who dx you with MS and recommended starting disease modifying drugs before waiting for another attack. Humbly requesting his professional opinion and treatment recommendations be forwarded to the MS clinic so your medical records can be updated/complete. It might help get your dx established at the MS clinic......
HUGS.............JJ
To me it looks like the US neuro was very sure you have MS based on more than just the LP, he suspected PPMS but definitely wanted you to start a DMD straight away and start symptom treatments. Initially starting out with a dx of RRMS and taking one of the DMD's, is pretty standard practice because RRMS is the most common (80%) and it usually takes some time to distinguish which of the progressive types it actually is. There is nothing written that 'could' indicate he was 'still' considering anything else but MS by your last appointment with him, and that's even though he absolutely knew about the APS!
The MS clinic report reads more like they only changed your pre-existing TM dx to a 'possible PPMS' for the time being, PPMS wouldn't require any changes in your treatment plan, which isn't a firm PPMS dx but a maybe. In truth, because the clinic report doesn't any where mention, you already had obtained a confirmed dx of MS from the US, i interpret it to mean the clinic was only considering MS (PPMS) at the time that report was written, and were still not convinced on what your final diagnosis was going to turn out to be.
"At this time we have not been able to identify another cause for her TM. She describes progresive neurological worsening over the last 2 years. At this time we can give her a dx of PPMS. This is based on the fact she has 2 lesions in the spinal cord, positive oligoclonal banding, neurological worsening over 12 months and the exclusion of other conditions....."
hmmmmmm are you absolutely positive the MS clinic dismissed you as their patient because of the positive APS tests?
IF you were dismissed, to me it's at odds with them arranging another appointment for you after the dismissal. Only explanation i can fathom is either you were not dismissed and you are still a patient with scheduled appointments or your patient data file was not updated and the appointment is human or an automatic system generated error..........i'd definitely be calling the clinic and finding out what the heck is going on!
[btw i wasn't thinking you were knowledgeable because of google hunting around, sorry if you thought that's what i meant]
grrrrrrrrr head spin on what on earth to say! Okay for what it's worth, i am going to recommend you consider contacting by any means possible, the US neuro who dx you with MS and recommended starting disease modifying drugs before waiting for another attack. Humbly requesting his professional opinion and treatment recommendations be forwarded to the MS clinic so your medical records can be updated/complete. It might help get your dx established at the MS clinic......
HUGS.............JJ
JJ
I am going to share exactly what the Neuro in the US notes state:
Assessments
1. White matter disorder- 341.9 (Primary) Possible MS
2. Myelopathy NOS-336.9
3. Primary hypercoagulable state. 296.81- Antiphospholipid antibody without diagnosis.
TREATMENT
1. White Matter Disorder
Diagnostic imaging MRI: Cervical with and without contrast MRI: Thoracic with and without contrast MRI
The presence of Oligoclonal bands favor MS, if SLE is totally excluded(as it appears to be as her ANA and DS DNA are negative). On primary antiphospholipid syndrome the presence of Obands is rare as well as spinal cord involvement. The main point is to be certain she has no neuropsychiatric lupus. She was ordered more bloodwork by Dr L (hematologist) I would do a followup spinal cord imaging since she feels she has progressed.
TM and NMO are other possibilities but the lack of RBC on her CSF, the multifocal pattern of her cord lesions (dissemination in time and space), the size of them and the lack of NMO antibodies would go against these diagnosis.
The MS lesions on African descendants are commonly located on the spinal cord and that's why it could be more severe in this population.
Follow up : After testing.
After testing this was the new notes
ASSESSMENTS: 1. Multiple sclerosis-340 (Primary)pp
TREATMENT
Multiple Sclerosis
After reviewimg all of her previous wor up and having a detailed discussion with the hematologist (Dr L) I do believe she has MS (Possibly PP) I do not believe it is wise to wait for another attack to start treatment and I would suggest one of the ABCs Copaxone and symptomatic treatment. I do agree with the use of Baclofen for spasticity. Neurontin should be increased slowly. Since she lives in Canada she should continue follow up there with her neurologist.
This From the MS Clinic. Visit on Aug 6/2014 (The surprised appt after they said they would not see me again)
"At this time we have not been able to identify another cause for her TM. She describes progresive neurological worsening over the last 2 years. At this time we can give her a dx of PPMS. This is based on the fact she has 2 lesions in the spinal cord, positive oligoclonal banding, neurological worsening over 12 months and the exclusion of other conditions. Unfortunately there are no known treatment for PPMS. Therefore the focus is on symptomatic management. And that was the focus of today's visit."
**All who I have seen are the doctors and specialists. It all started in the hospital. I was then sent to MS clinic. Then clinic dismissed me after 3rd visit and advise to see hema. I went to hema who said I also need neuro so I saw those. Come back to Canada and saw internal med doc. He said I need neuro. I voiced concern about positive aps test and the need to have someone to deal with that. He promised referral to hema and neuro. While waiting, surprised appt from MS clinic. Now find out no referrals was made. I have not seen anyone since.
JJ this is a lot but I hope clearer. I guess my trying to make post shorter added to the confusion. Thanks.
I am going to share exactly what the Neuro in the US notes state:
Assessments
1. White matter disorder- 341.9 (Primary) Possible MS
2. Myelopathy NOS-336.9
3. Primary hypercoagulable state. 296.81- Antiphospholipid antibody without diagnosis.
TREATMENT
1. White Matter Disorder
Diagnostic imaging MRI: Cervical with and without contrast MRI: Thoracic with and without contrast MRI
The presence of Oligoclonal bands favor MS, if SLE is totally excluded(as it appears to be as her ANA and DS DNA are negative). On primary antiphospholipid syndrome the presence of Obands is rare as well as spinal cord involvement. The main point is to be certain she has no neuropsychiatric lupus. She was ordered more bloodwork by Dr L (hematologist) I would do a followup spinal cord imaging since she feels she has progressed.
TM and NMO are other possibilities but the lack of RBC on her CSF, the multifocal pattern of her cord lesions (dissemination in time and space), the size of them and the lack of NMO antibodies would go against these diagnosis.
The MS lesions on African descendants are commonly located on the spinal cord and that's why it could be more severe in this population.
Follow up : After testing.
After testing this was the new notes
ASSESSMENTS: 1. Multiple sclerosis-340 (Primary)pp
TREATMENT
Multiple Sclerosis
After reviewimg all of her previous wor up and having a detailed discussion with the hematologist (Dr L) I do believe she has MS (Possibly PP) I do not believe it is wise to wait for another attack to start treatment and I would suggest one of the ABCs Copaxone and symptomatic treatment. I do agree with the use of Baclofen for spasticity. Neurontin should be increased slowly. Since she lives in Canada she should continue follow up there with her neurologist.
This From the MS Clinic. Visit on Aug 6/2014 (The surprised appt after they said they would not see me again)
"At this time we have not been able to identify another cause for her TM. She describes progresive neurological worsening over the last 2 years. At this time we can give her a dx of PPMS. This is based on the fact she has 2 lesions in the spinal cord, positive oligoclonal banding, neurological worsening over 12 months and the exclusion of other conditions. Unfortunately there are no known treatment for PPMS. Therefore the focus is on symptomatic management. And that was the focus of today's visit."
**All who I have seen are the doctors and specialists. It all started in the hospital. I was then sent to MS clinic. Then clinic dismissed me after 3rd visit and advise to see hema. I went to hema who said I also need neuro so I saw those. Come back to Canada and saw internal med doc. He said I need neuro. I voiced concern about positive aps test and the need to have someone to deal with that. He promised referral to hema and neuro. While waiting, surprised appt from MS clinic. Now find out no referrals was made. I have not seen anyone since.
JJ this is a lot but I hope clearer. I guess my trying to make post shorter added to the confusion. Thanks.
JJ i should add that the only other site i read is the APS site that a member here directed me to and so I am also a member of their forum and the UK Hughes syndrome site has a lot of info. I do not willy nilly just read anything as that is where a lot of false info comes from and causes anxiety. I don't need that. There are days when I want to give up.
Also, when I came back to Canada after 5 months in the US I got an appointment with the internal medicine doc and he too said with all the neurological issues I have it is beyond him and he think the MS dx is right and the only thing wrong with me.and dismissed me. I saw him as the aPL was still positive and worst case secario was me having both MS and APS and would need two specialist. At that point I told him it is evident something is wrong and since the MS clinic dismissed, he is dismissing me, I am not a doctor so who is going to treat me? He said he would refer me to a neurologist and a blood clot specialist 4 hours away. I waited and waited and called. This was from June/July. Only this past week I found out from my NP who is my PCP that he did not make any referral.
Also, when I came back to Canada after 5 months in the US I got an appointment with the internal medicine doc and he too said with all the neurological issues I have it is beyond him and he think the MS dx is right and the only thing wrong with me.and dismissed me. I saw him as the aPL was still positive and worst case secario was me having both MS and APS and would need two specialist. At that point I told him it is evident something is wrong and since the MS clinic dismissed, he is dismissing me, I am not a doctor so who is going to treat me? He said he would refer me to a neurologist and a blood clot specialist 4 hours away. I waited and waited and called. This was from June/July. Only this past week I found out from my NP who is my PCP that he did not make any referral.
Thanks HVAC. Since this is so I will rest a while as I am overwhelmed plus depressed and then try to tackle getting another LP done properly as it relates to MS.
Hope you are feeling better these days.
Hope you are feeling better these days.
JJ thanks for responding. I am sorry I confused you by my presentation of what has been going on. I have been confused too by the different conclusions, omissions etc from those medical personnels I have seen since this started.
My facts stem from hard evidence as I have all my consult notes,MRI cds and blood and CSF test results with me. The only 2 things I claimed to learn are about the MS protocol for MRIs and the blood that should be tested at the same time with an LP. Those I learnt here and are facts. I am not a fan of Dr Google so I don't use info from the internet. And no I don't look at the CDs. I even wonder at times if I have been too laid back with what is going on.
"If your LP results were the 'only' reason why your original dx of TM changed to the dx of MS (PPMS) 'and' the LP was definitely obtained by incorrect MS testing procedures (no blood).....from my understanding of what you've been stating, the dx of MS (PPMS) was not actually correct if the evidence used to be dx-ed with it, was incorrectly obtained and interpreted! "
The above you wrote is basically it except this neuro (who is the one I saw in the US) after looking at the MRI disc said it was not TM due to the nature and size of the lesions. He gave the dx of PPMS.
I have gone along with what they have been saying but get confused when they say different things and wonder how can a neurologist considering MS do an LP without a corresponding blood test. I am not the doctor, they are.
When the MS clinic dismissed me due to the positive aPL test and said I should consider APS and see a hematologist. I did exactly that. I saw a hema and despite the positive test he said there is more going on so he sent me to a neuro (This was in the US). I redid tests and spinal MRI and they both conferred and the result was a dx of PPMS. I took all my previous test results and MRI cds to them. I only went there as it was going to take me a long time to see an internal medicine doctor here as there are no hematologist in this city.
So the reason for my post was realizing the CSF results were null and void based on how the test was done...I questioned the dx of MS due to positive Obands and wanted to know if I redo LP the Obands would still be there.
Yes it is the same MS clinc whic is 2 hrs away. They said they would not see me again due to the positive test, cuts to their system and I did not fall within their catchment area. So I accepted that. Months later I was surprised to get a letter from them with an appointment. I did not see the neuro at that visit but the NP and she went along with PPMS and siad they would see me within a year.
Based on the mention of Obands in making the dx and what I learnt about LP tests I questioned it. Not to them but to myself and so came here to ask about redoing. I do not have a support system. I do not have family except 3 kids who are on their own so this group is the one place I feel free and comfortable to ask questions. There has been a lot going on so yes my delivery is confusing as I am. For that I am sorry.
My facts stem from hard evidence as I have all my consult notes,MRI cds and blood and CSF test results with me. The only 2 things I claimed to learn are about the MS protocol for MRIs and the blood that should be tested at the same time with an LP. Those I learnt here and are facts. I am not a fan of Dr Google so I don't use info from the internet. And no I don't look at the CDs. I even wonder at times if I have been too laid back with what is going on.
"If your LP results were the 'only' reason why your original dx of TM changed to the dx of MS (PPMS) 'and' the LP was definitely obtained by incorrect MS testing procedures (no blood).....from my understanding of what you've been stating, the dx of MS (PPMS) was not actually correct if the evidence used to be dx-ed with it, was incorrectly obtained and interpreted! "
The above you wrote is basically it except this neuro (who is the one I saw in the US) after looking at the MRI disc said it was not TM due to the nature and size of the lesions. He gave the dx of PPMS.
I have gone along with what they have been saying but get confused when they say different things and wonder how can a neurologist considering MS do an LP without a corresponding blood test. I am not the doctor, they are.
When the MS clinic dismissed me due to the positive aPL test and said I should consider APS and see a hematologist. I did exactly that. I saw a hema and despite the positive test he said there is more going on so he sent me to a neuro (This was in the US). I redid tests and spinal MRI and they both conferred and the result was a dx of PPMS. I took all my previous test results and MRI cds to them. I only went there as it was going to take me a long time to see an internal medicine doctor here as there are no hematologist in this city.
So the reason for my post was realizing the CSF results were null and void based on how the test was done...I questioned the dx of MS due to positive Obands and wanted to know if I redo LP the Obands would still be there.
Yes it is the same MS clinc whic is 2 hrs away. They said they would not see me again due to the positive test, cuts to their system and I did not fall within their catchment area. So I accepted that. Months later I was surprised to get a letter from them with an appointment. I did not see the neuro at that visit but the NP and she went along with PPMS and siad they would see me within a year.
Based on the mention of Obands in making the dx and what I learnt about LP tests I questioned it. Not to them but to myself and so came here to ask about redoing. I do not have a support system. I do not have family except 3 kids who are on their own so this group is the one place I feel free and comfortable to ask questions. There has been a lot going on so yes my delivery is confusing as I am. For that I am sorry.
COMMUNITY LEADER
I have to wonder if part of the confusion stems from 'your' own interpretation of your test facts, in part your acquired knowledge and any resulting assumptions, diagnosis's etc from multiple medical specific experts with differing opinions (hematologist, NP, neurological, PSTD therapist)
Take a step back and clear your mind of what you think you know.........for the moment, only look at what you factually know to be true, which is typically in writing eg MRI reports, neurological assessment reports, blood tests etc etc etc
I think it would be less confusing for you and others, if you avoided thinking about or including conflicting information eg.
"The MS clinic dismissed me saying it was APS after the positive aPL test.
I had to wait a long itme to see a hematologist here for the APS so I went to the US with all my tests and MRIs. The hema also sent me to a neuro, I tested positive again for APS antibody. The neuro based on the positive Oband result making the difference between MS and MS gave a dx of MS. "
If your LP results were the 'only' reason why your original dx of TM changed to the dx of MS (PPMS) 'and' the LP was definitely obtained by incorrect MS testing procedures (no blood).....from my understanding of what you've been stating, the dx of MS (PPMS) was not actually correct if the evidence used to be dx-ed with it, was incorrectly obtained and interpreted!
PPMS typically has a higher number of obands compared to the other types of MS, so being misdiagnosed with PPMS does actually make some sense, if the high number of obands was the reason behind the PPMS dx.
The way you've set out the information is often out of order/over lapping and i'm wondering if you were actually officially dx or just highly suspected and referred on for confirmation by the MS clinic. It's quite common for none specialising neuro's to suspect a condition and refer the person on to the relevant specialist. A specialising MS neuro, will either officially confirm it as MS, treat and then work out which type or discount MS for various reasons, usually from the patients objective diagnostic evidence, MS expertise etc
I can't work out if your MS clinic appointment is with the same MS clinic that actually excluded MS based on your repeated positive APS, which has me scratching my head cause if you don't have a neuro in Canada, it sounds like your talking about the same MS clinic that;s already excluded MS and concluded APS as the alternate causation.
From what i understand of APS, it's an alternate autoimmune condition which is commonly misdiagnosed as MS and if your hard 'objective' test evidence has already established APS and the MS clinic excluded MS based on your hard 'objective' test evidence.........i honestly believe you need to forget about MS for now and focus only on your undisputed APS and get completely assessed for all it's associated conditions!
Cheers...........JJ
Take a step back and clear your mind of what you think you know.........for the moment, only look at what you factually know to be true, which is typically in writing eg MRI reports, neurological assessment reports, blood tests etc etc etc
I think it would be less confusing for you and others, if you avoided thinking about or including conflicting information eg.
"The MS clinic dismissed me saying it was APS after the positive aPL test.
I had to wait a long itme to see a hematologist here for the APS so I went to the US with all my tests and MRIs. The hema also sent me to a neuro, I tested positive again for APS antibody. The neuro based on the positive Oband result making the difference between MS and MS gave a dx of MS. "
If your LP results were the 'only' reason why your original dx of TM changed to the dx of MS (PPMS) 'and' the LP was definitely obtained by incorrect MS testing procedures (no blood).....from my understanding of what you've been stating, the dx of MS (PPMS) was not actually correct if the evidence used to be dx-ed with it, was incorrectly obtained and interpreted!
PPMS typically has a higher number of obands compared to the other types of MS, so being misdiagnosed with PPMS does actually make some sense, if the high number of obands was the reason behind the PPMS dx.
The way you've set out the information is often out of order/over lapping and i'm wondering if you were actually officially dx or just highly suspected and referred on for confirmation by the MS clinic. It's quite common for none specialising neuro's to suspect a condition and refer the person on to the relevant specialist. A specialising MS neuro, will either officially confirm it as MS, treat and then work out which type or discount MS for various reasons, usually from the patients objective diagnostic evidence, MS expertise etc
I can't work out if your MS clinic appointment is with the same MS clinic that actually excluded MS based on your repeated positive APS, which has me scratching my head cause if you don't have a neuro in Canada, it sounds like your talking about the same MS clinic that;s already excluded MS and concluded APS as the alternate causation.
From what i understand of APS, it's an alternate autoimmune condition which is commonly misdiagnosed as MS and if your hard 'objective' test evidence has already established APS and the MS clinic excluded MS based on your hard 'objective' test evidence.........i honestly believe you need to forget about MS for now and focus only on your undisputed APS and get completely assessed for all it's associated conditions!
Cheers...........JJ
I was told by my MS Specialist that o-bands are like tree rings they never go away. That is why you usually never have to have another if it is done correctly.
Alex
Alex
Hi Kyle,plain and simple, it never happened. I love that. I totally agree with you about the neuro who did the LP, and the two that accepted the result without corresponding serum data do not understand MS. Thank you.
Any mention, discussion or contemplation of your previous LP is not helpful. You need to pretend it never happened. You may wish to have an LP, with blood draw performed but not because the first one was done incorrectly. This is because from now on, the first one never happened.
A neurologist that orders an MS LP without a blood draw does not understand MS. A neurologist that interprets LP CSF results without corresponding serum data does not understand MS. Any mention of CSF findings without smae breath mention of serum data will serve only to confuse things.
Kyle
A neurologist that orders an MS LP without a blood draw does not understand MS. A neurologist that interprets LP CSF results without corresponding serum data does not understand MS. Any mention of CSF findings without smae breath mention of serum data will serve only to confuse things.
Kyle
Hi JJ, I am confused too.
* I don't have an MS specialist except at the MS clinic and I only saw him twice in my 4 visits.
** Of the tests to rule out I tested positive for the APS antibody. APS is a great mimic of MS. The one difference is Obands in CSF for MS and none in APS. My LP was done in the hospital by a neurologist after lesions were found in brain and spinal cord. He however did not do a blood draw. I found out about the needed blood draw from this group. Also none of my MRIs were done using MS protocol even though they were thinking MS. I only found out at my last MRI because I asked after learning about it it here.
** The MS clinic dismissed me saying it was APS after the positive aPL test.
I had to wait a long itme to see a hematologist here for the APS so I went to the US with all my tests and MRIs. The hema also sent me to a neuro, I tested positive again for APS antibody. The neuro based on the positive Oband result making the difference between MS and MS gave a dx of MS.
I came back to Canada and after learning about the need for a blood draw at an LP I found out it was not done so the Oband result is null and void and the neuro in the US did not know or realise there was no blood draw with the LP.
I don't even have a neurologist here now and no hematologist. I have a year appointment with the MS clinic who did see me again...but not the doctor. I was seen by the NP who went along with what the US doctor said..PPMS.
** With the info gleaned here about LP and MS protocol I realised my care has been greatly messed up. Thus my asking about doing over the LP and doing it properly. APS and MS resembles each other down to the lesions, sensory and motor symptoms; even the footdrop, that it is difficult to tell which is which but the Obands is one of the biggest difference.
**Enhancement was seen in the spinal lesion at the time in 2012.
So I will find a neurologist and ask to have the LP redone. The result did not even say how many. It just said positive.
As for the derealization I know it occurs in mental disorders and I have PTSD so I don't know why the therapist told me to ask if it comes with MS. I Feel I am being dismissed and shortchanged left right and center.
Thank you.
* I don't have an MS specialist except at the MS clinic and I only saw him twice in my 4 visits.
** Of the tests to rule out I tested positive for the APS antibody. APS is a great mimic of MS. The one difference is Obands in CSF for MS and none in APS. My LP was done in the hospital by a neurologist after lesions were found in brain and spinal cord. He however did not do a blood draw. I found out about the needed blood draw from this group. Also none of my MRIs were done using MS protocol even though they were thinking MS. I only found out at my last MRI because I asked after learning about it it here.
** The MS clinic dismissed me saying it was APS after the positive aPL test.
I had to wait a long itme to see a hematologist here for the APS so I went to the US with all my tests and MRIs. The hema also sent me to a neuro, I tested positive again for APS antibody. The neuro based on the positive Oband result making the difference between MS and MS gave a dx of MS.
I came back to Canada and after learning about the need for a blood draw at an LP I found out it was not done so the Oband result is null and void and the neuro in the US did not know or realise there was no blood draw with the LP.
I don't even have a neurologist here now and no hematologist. I have a year appointment with the MS clinic who did see me again...but not the doctor. I was seen by the NP who went along with what the US doctor said..PPMS.
** With the info gleaned here about LP and MS protocol I realised my care has been greatly messed up. Thus my asking about doing over the LP and doing it properly. APS and MS resembles each other down to the lesions, sensory and motor symptoms; even the footdrop, that it is difficult to tell which is which but the Obands is one of the biggest difference.
**Enhancement was seen in the spinal lesion at the time in 2012.
So I will find a neurologist and ask to have the LP redone. The result did not even say how many. It just said positive.
As for the derealization I know it occurs in mental disorders and I have PTSD so I don't know why the therapist told me to ask if it comes with MS. I Feel I am being dismissed and shortchanged left right and center.
Thank you.
Thanks for your response. The leaning towards MS is that it is that presence of Obands lean towards MS as Obands are not usually found in APS.
Thanks to this group I learnt about MS protocol and blood being tested at the same time as the LP. I asked at my last MRI and found out none was done using MS protocol. I also realised no blood was tested with the LP. So even though it said positive for Obands I realised the result was useless.
Thanks to this group I learnt about MS protocol and blood being tested at the same time as the LP. I asked at my last MRI and found out none was done using MS protocol. I also realised no blood was tested with the LP. So even though it said positive for Obands I realised the result was useless.
COMMUNITY LEADER
Hi there,
Um !! There seems to be a lot of conflicting information posted (or so it seems to my pea brain lol) regarding your entire experience of being dx with MS and then not. I have struggled to make sense of the changing diagnostic evidence (MRI's, LP, symptom pattern etc) and the neurological opinions, whether a general neuro or an MS specialist...........I am genuinely confused!
You asked if derealization was related to MS...........derealization (disassociation - external world) and depersonalization (disassociation- internal/self) was combined in the DSM-5 and still classified as a dissociative disorder. Whilst it is associated to some neurological conditions eg epilepsy, it is more commonly isolated to mental health conditions eg bipolar, PTSD, major depressive disorders, panic attacks etc but even though anxiety and depression are fairly common 'secondary' issues in MS, this particular M/H issue isn't something generally associated with MS.
From my understanding of your prior posts, the spinal cord lesions (T and C) were originally diagnosed as Transverse Myelitis (TM), and TM would actually make sense, considering your symptoms started out bilateral from the get go. TM cord lesions more commonly cause bilateral spinal issues, because they are usually bigger than cord lesions caused by MS, with TM cord lesions often cutting across the cord producing bilateral sx's below and why MS cord lesions more commonly cause unilateral sx's.
Your LP results are basically meaningless in regards to MS, with out bloods there generally isn't a reference to know if the oband number is artificially high, which could even be so high that MS would be more unlikely. I'm not sure how to explain what's in my head sorry, hmmm try reading this to understand LP results...... http://www.mstrust.org.uk/atoz/lumbar_puncture.jsp
Theoretically if one LP is indicating MS, any follow up LP's should still be indicating MS, the hiccup here is the validity of your first LP. I think you'd basically have exactly the same 80-95% odds as anyone of having obands if it is MS, though the LP results alone shouldn't be taking MS off the table if you don't.
2 brain lesion are not actually classed as abnormal, you've mentioned having 7 brain lesions before but for your age group that number isn't really unexpected. With out details like their location, size, enhancing etc etc there isn't any specifics that would make them more suggestive of them being MS and not say something like migraine, vascular, M/H etc etc
It still doesn't make any sense to me why your 'MS specialist' hasn't reordered an LP if it wasn't done correctly and why/how none of the MRI's he/she's ordered was using MS protocol.....
oh, if none of your lesions have enhanced on any of your MRI's, does that actually mean you did have MRI's with and without contrast ordered by your MS specialist and could of been MS protocol?
Sorry i realised i've gone into more than just your questions, mainly trying to understand what's been going on, and how your still in MS limbo, hopefully there is something in what i've to get you thinking, though i do think you need to get all your test results together go through your clinical assessments, each MRI brain and spine, blood tests, nerve tests etc and note the details and every abnormality and or change mentioned......
Food for thought.........JJ
Um !! There seems to be a lot of conflicting information posted (or so it seems to my pea brain lol) regarding your entire experience of being dx with MS and then not. I have struggled to make sense of the changing diagnostic evidence (MRI's, LP, symptom pattern etc) and the neurological opinions, whether a general neuro or an MS specialist...........I am genuinely confused!
You asked if derealization was related to MS...........derealization (disassociation - external world) and depersonalization (disassociation- internal/self) was combined in the DSM-5 and still classified as a dissociative disorder. Whilst it is associated to some neurological conditions eg epilepsy, it is more commonly isolated to mental health conditions eg bipolar, PTSD, major depressive disorders, panic attacks etc but even though anxiety and depression are fairly common 'secondary' issues in MS, this particular M/H issue isn't something generally associated with MS.
From my understanding of your prior posts, the spinal cord lesions (T and C) were originally diagnosed as Transverse Myelitis (TM), and TM would actually make sense, considering your symptoms started out bilateral from the get go. TM cord lesions more commonly cause bilateral spinal issues, because they are usually bigger than cord lesions caused by MS, with TM cord lesions often cutting across the cord producing bilateral sx's below and why MS cord lesions more commonly cause unilateral sx's.
Your LP results are basically meaningless in regards to MS, with out bloods there generally isn't a reference to know if the oband number is artificially high, which could even be so high that MS would be more unlikely. I'm not sure how to explain what's in my head sorry, hmmm try reading this to understand LP results...... http://www.mstrust.org.uk/atoz/lumbar_puncture.jsp
Theoretically if one LP is indicating MS, any follow up LP's should still be indicating MS, the hiccup here is the validity of your first LP. I think you'd basically have exactly the same 80-95% odds as anyone of having obands if it is MS, though the LP results alone shouldn't be taking MS off the table if you don't.
2 brain lesion are not actually classed as abnormal, you've mentioned having 7 brain lesions before but for your age group that number isn't really unexpected. With out details like their location, size, enhancing etc etc there isn't any specifics that would make them more suggestive of them being MS and not say something like migraine, vascular, M/H etc etc
It still doesn't make any sense to me why your 'MS specialist' hasn't reordered an LP if it wasn't done correctly and why/how none of the MRI's he/she's ordered was using MS protocol.....
oh, if none of your lesions have enhanced on any of your MRI's, does that actually mean you did have MRI's with and without contrast ordered by your MS specialist and could of been MS protocol?
Sorry i realised i've gone into more than just your questions, mainly trying to understand what's been going on, and how your still in MS limbo, hopefully there is something in what i've to get you thinking, though i do think you need to get all your test results together go through your clinical assessments, each MRI brain and spine, blood tests, nerve tests etc and note the details and every abnormality and or change mentioned......
Food for thought.........JJ
For the purposes of creating an MS diagnostic picture, a lumbar puncture without serum drawn in the same time frame provides precisely zero input one way or the other. There is no relevant information to be gleaned, therefore should not be considered as "leaning towards MS".
LPs are more about rounding out the diagnostic picture, like a road sign for the neurologist that helps them determine if they're on the right track. However, if zero oligoclonal bands are found, it does not rule out MS. Many neurologists forego the LP procedure altogether when doing an MS workup for this reason.
In future, if you have the procedure repeated with serum also drawn, it will be the difference between the number of o-bands in the cerebro-spinal fluid and those found in the serum that count. For example, if 4 bands were found in your CSF and 4 bands were found in your blood, you have zero unique bands. If you have 4 in the CSF and 1 in the blood, you have 3 unique o-bands. (these are just an example using random numbers).
It is my understanding that the o-bands in your CSF will remain there when the procedure is repeated, though someone will correct me or add to that if I'm mistaken.
As for your second question, I'm unfamiliar with derealisation being associated with MS, but your neurologist will hopefully be able to answer that more concretely. Lightheadedness, in terms of something like vertigo, is often mentioned in conjunction with MS, but vertigo is also encountered in many other conditions. Lightheadedness in terms of feeling faint, I've not heard of. But as a layman, I'd recommend asking that the pros about that too.
Hope this helps a bit!
LPs are more about rounding out the diagnostic picture, like a road sign for the neurologist that helps them determine if they're on the right track. However, if zero oligoclonal bands are found, it does not rule out MS. Many neurologists forego the LP procedure altogether when doing an MS workup for this reason.
In future, if you have the procedure repeated with serum also drawn, it will be the difference between the number of o-bands in the cerebro-spinal fluid and those found in the serum that count. For example, if 4 bands were found in your CSF and 4 bands were found in your blood, you have zero unique bands. If you have 4 in the CSF and 1 in the blood, you have 3 unique o-bands. (these are just an example using random numbers).
It is my understanding that the o-bands in your CSF will remain there when the procedure is repeated, though someone will correct me or add to that if I'm mistaken.
As for your second question, I'm unfamiliar with derealisation being associated with MS, but your neurologist will hopefully be able to answer that more concretely. Lightheadedness, in terms of something like vertigo, is often mentioned in conjunction with MS, but vertigo is also encountered in many other conditions. Lightheadedness in terms of feeling faint, I've not heard of. But as a layman, I'd recommend asking that the pros about that too.
Hope this helps a bit!
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