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Have PTOS. Diagnosed With Lupus. Had Negative MRI. Mean Poor Prognosis? Attacked Brain And Nervous System?
Question: I have postural orthostatic tachycardia syndrome (POTS, a type of dysautonomia) I was recently diagnosed with Lupus. I have had a negative MRI of my brain.... does this mean my Lupus has already attacked my brain and nervous system? im 27 and just got diagnosed with both of these. Does this mean poor prognosis????? I heard lupus with brain and neurological involvement leads to poor prognosis . I do not have peripheral neuropathy (was tested) all my autoantibodies were negative- lupus was diagnosed with symptoms and high XXXXXXX and high esr
Hi,
Thank you for posting your query on XXXXXXX
Looking into what history you are giving i see that you suffer from POTS and LUPUS .Your main concern seems to be about the prognosis of lupus. POTS have been seen in occurrence with lupus and its diagnosis is made by Tilt table test . MRI is generally done to see any stroke or vasculitis changes which are not present that's a good sign. SLE is generally found in young females so you don't worry that this has affected you in young age.
SLE (organ involvement . Well the activity of SLE can be assessed by ESR (erythrocyte sedimentation rate), CRP (C-reactive protein) , Anti dsDNA levels , C3 and C4 complement levels , ENA profile , urine for proteins etc which can predict the further course to some extent .
I suggest you to contact a rheumatologist as if adequately treated the organ involvement in SLE can be controlled to a good extent .But it is very important to start the treatment at the earliest phase of disease to have a rapid control over the disease process so seek medical help at earliest .
Hope it answers your query.
Thanks,
Dr. Shruti
Thank you for posting your query on XXXXXXX
Looking into what history you are giving i see that you suffer from POTS and LUPUS .Your main concern seems to be about the prognosis of lupus. POTS have been seen in occurrence with lupus and its diagnosis is made by Tilt table test . MRI is generally done to see any stroke or vasculitis changes which are not present that's a good sign. SLE is generally found in young females so you don't worry that this has affected you in young age.
SLE (organ involvement . Well the activity of SLE can be assessed by ESR (erythrocyte sedimentation rate), CRP (C-reactive protein) , Anti dsDNA levels , C3 and C4 complement levels , ENA profile , urine for proteins etc which can predict the further course to some extent .
I suggest you to contact a rheumatologist as if adequately treated the organ involvement in SLE can be controlled to a good extent .But it is very important to start the treatment at the earliest phase of disease to have a rapid control over the disease process so seek medical help at earliest .
Hope it answers your query.
Thanks,
Dr. Shruti
Above answer was peer-reviewed by :
Dr. Raju A.T
thank you so much I was diagnosed with Lupus and POTS very close together - everything started 2 weeks after I had a premature birth- before birth I was normal. the POTS I understand A LOT . the Lupus I do not- I was concerned because I had an SPEP that showed Polycolonial gammapathy. I also have had a headache for 2 weeks.... all pressured may be sinus but I have no sinus drainage- when she did my XXXXXXX at the beginning it was 1:165 speckeled, my ESR was 29 CPK 0.1 that was about 2 months ago after initial diagnoses- I have no autoantibodies showing positive- shes basing it off of symptoms . and the positive labs that I just discussed. I was concerned as I heard when Lupus affects the neuro system it can be considered poor prognosis - the only neurological concern is the POTS as its a dysfunction of the automatic nervous system though I don't know if lupus caused POTS or I jut have POTS too.... any thoughts on that? also the headache? should I be concerned - its like ear pressure and eye pressure sometimes and the back of my head has pressure. 1.5 weeks now but very very slowely better- otherwise my body feels good. my upper back can hurt sometimes too. Also ive been on plaquinil for 2 months - should it kicked in by now? thank you look forward to your follow up
Hi !
Thank you for your query.
Whether lupus and POTS are related or not is difficult thing to answer but yes there exist a strong possibilty of their relation .What concerrns me is your history of having a premature birth which prompts me to suggest you to consult a rheumatologist for work up for conditions like Anti phospholipid syndrome that may also coexist with lupus.
Regarding your headache it can also be because of lupus what we call as Lupus Headache is severe kind of persistent headache described with lupus .You are taking Plaquinil which contains Hydoxychloroquine is very safe and good drug for lupus but it takes time to show the results .
I suggest you to be in touch with your rheumatologist as these are chronic disorders and need regular evaluation for the activity .
Take care.
Dr. Shruti
Thank you for your query.
Whether lupus and POTS are related or not is difficult thing to answer but yes there exist a strong possibilty of their relation .What concerrns me is your history of having a premature birth which prompts me to suggest you to consult a rheumatologist for work up for conditions like Anti phospholipid syndrome that may also coexist with lupus.
Regarding your headache it can also be because of lupus what we call as Lupus Headache is severe kind of persistent headache described with lupus .You are taking Plaquinil which contains Hydoxychloroquine is very safe and good drug for lupus but it takes time to show the results .
I suggest you to be in touch with your rheumatologist as these are chronic disorders and need regular evaluation for the activity .
Take care.
Dr. Shruti
Above answer was peer-reviewed by :
Dr. Vaishalee Punj
I am a nurse so I understand it a little- but I have had Normal APTT, and normal PT/INR's if I had Anti phospholipid syndrome wouldn't those be abnormal? I did have a chest angiogram a while back normal as well. should I be seen promptly by a rheumo ? is this very serious, I f/u with her in 2 weeks. I have never had a blood clot.
also my pregnancy- I got pregnant and a month later started bleeding - they told me I had a Subchrionic Hemmorage and possible bicorunate uterus (they saw on ultrasound but we haven't done the true test to make sure) anyway the subchrionic hemmorage turned into a placental abruption- which is why my baby was born at 23 weeks gestation. so could of phospholipid syndrome cause that?
also my pregnancy- I got pregnant and a month later started bleeding - they told me I had a Subchrionic Hemmorage and possible bicorunate uterus (they saw on ultrasound but we haven't done the true test to make sure) anyway the subchrionic hemmorage turned into a placental abruption- which is why my baby was born at 23 weeks gestation. so could of phospholipid syndrome cause that?
Hi !
Well its not urgent you can follow after 2 weeks . APS is not diagnosed by APTT , PT /INR there has to be antibody profile namely - Lupus anticoagulant , Anti beta 2 glycoprotein 1 ,anti cardiolipin antibody along with pregnancy complications and evidence of thrombosis.
APS mainly leads to thrombotic complications not the bleeding ones so ther is less possibilty of your haemorrhage being there because of APS but still i will suggest you to go for thorough check up and consult your rheumatologist for same.
Take care.
Dr Shruti
Well its not urgent you can follow after 2 weeks . APS is not diagnosed by APTT , PT /INR there has to be antibody profile namely - Lupus anticoagulant , Anti beta 2 glycoprotein 1 ,anti cardiolipin antibody along with pregnancy complications and evidence of thrombosis.
APS mainly leads to thrombotic complications not the bleeding ones so ther is less possibilty of your haemorrhage being there because of APS but still i will suggest you to go for thorough check up and consult your rheumatologist for same.
Take care.
Dr Shruti
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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