Aa
U B O"s ??????
A question please.........
Went to a neuro today and he looked over my Labs (blood work), Venus doppler of lower extremities, Carotid Duplex Scan, Transcranial Doppler Scan ( both the scans where looking for carotid stenosis and intracranial arterial tree or anything vascular in nature that could explain the lesions on MRI), X-Rays of lungs (because of the hx of Sarcoidosis), Everyone of those tests are normal !
The only thing that has come back abnormal are the (3) MRI's. (2) were done on a 1.5T and (1) on the 3T. All showing several lesions in the periventrivular, perivascular spaces within the white matter of the left and right parietal lobes and left frontal lobe. The neuro agrees that none of this is ischemic in nature (DUH!).
He then did the clinical test and the only thing that was not good was (as did another neuro) that when he taps the shin with the mallet, I am hyperflexic (?) and when I stood with one foot infront of the other with eyes closed, I could not keep balance.
After all that he said.....Well, you are a complicated case ( again i have heard those exact same words from 2 other neuro's in the past) because of having a dx of Sarcoidosis, The lesions could indicate either Neuro Sarcoid, MS, Or UBO's. I said "even though all other tests came back ok and the lesions tend to be in a MS area?"
So.....He says "Well for now I think I am just going to put this down as UBO's for now".
What do you all think about that? Should I "RUN" from him? Oh ya, I have not had an LP done because 2 neuro's agree that it would be a waste of time and money to do an invasive test like that just to get the POSITIVE results. That is because the LP results will show the same in both MS and Sarcoid. So it is not a usefull test for me.
Please tell me your thoughts. No one wants to give a definite dx of MS even though exclusion of tests, clinical exams, and MRI points to that because of having dx of sarcoid they think...Well maybe it COULD be neurosarcoid.
I am so frustrated. I do not know what to think.
Sorry so long,
Thanks in advance for your comments.
~Tonya
Went to a neuro today and he looked over my Labs (blood work), Venus doppler of lower extremities, Carotid Duplex Scan, Transcranial Doppler Scan ( both the scans where looking for carotid stenosis and intracranial arterial tree or anything vascular in nature that could explain the lesions on MRI), X-Rays of lungs (because of the hx of Sarcoidosis), Everyone of those tests are normal !
The only thing that has come back abnormal are the (3) MRI's. (2) were done on a 1.5T and (1) on the 3T. All showing several lesions in the periventrivular, perivascular spaces within the white matter of the left and right parietal lobes and left frontal lobe. The neuro agrees that none of this is ischemic in nature (DUH!).
He then did the clinical test and the only thing that was not good was (as did another neuro) that when he taps the shin with the mallet, I am hyperflexic (?) and when I stood with one foot infront of the other with eyes closed, I could not keep balance.
After all that he said.....Well, you are a complicated case ( again i have heard those exact same words from 2 other neuro's in the past) because of having a dx of Sarcoidosis, The lesions could indicate either Neuro Sarcoid, MS, Or UBO's. I said "even though all other tests came back ok and the lesions tend to be in a MS area?"
So.....He says "Well for now I think I am just going to put this down as UBO's for now".
What do you all think about that? Should I "RUN" from him? Oh ya, I have not had an LP done because 2 neuro's agree that it would be a waste of time and money to do an invasive test like that just to get the POSITIVE results. That is because the LP results will show the same in both MS and Sarcoid. So it is not a usefull test for me.
Please tell me your thoughts. No one wants to give a definite dx of MS even though exclusion of tests, clinical exams, and MRI points to that because of having dx of sarcoid they think...Well maybe it COULD be neurosarcoid.
I am so frustrated. I do not know what to think.
Sorry so long,
Thanks in advance for your comments.
~Tonya
Actually I had 2 chest X-Rays w/in a week of each other when I was admitted into the hospital a couple weeks ago......both were negative.
They were also neg. when I got the original DX of sarcoid because the sarcoid was in the lymphnodes in the lungs which only the CT picked up. The radiologist had the nerve to come out and tell me I had hogkins lymphoma! Well needless to say I passed out in the hall of the hospital because I was thinking instant death......but the biopsy proved otherwise.........guess the radiologist should have kept his mouth shut before jumping the gun!
I just want to add to all of you, you all are such a great bunch of people! I have learned so much from you all. And Quix.......Big Hugs to you! you are such a wealth of information and so kind to give of yourself the way that you do.
Big Hugs,
~tonya
They were also neg. when I got the original DX of sarcoid because the sarcoid was in the lymphnodes in the lungs which only the CT picked up. The radiologist had the nerve to come out and tell me I had hogkins lymphoma! Well needless to say I passed out in the hall of the hospital because I was thinking instant death......but the biopsy proved otherwise.........guess the radiologist should have kept his mouth shut before jumping the gun!
I just want to add to all of you, you all are such a great bunch of people! I have learned so much from you all. And Quix.......Big Hugs to you! you are such a wealth of information and so kind to give of yourself the way that you do.
Big Hugs,
~tonya
Absolutely, I think they are being negligent for not investigating and trying to get you into proper treatment. At the VERY LEAST they should be referring you to someone who DOES know how to treat and/or diagnose neurosarcoidosis.
You can't just back off, stop treating and and not refer or do something.
I would like to tell they to hit the books and figure this out. The problem is, now that I have seen their reactions, I wouldn't trust them to do the right thing or to treat me correctly or to ever tell me they don't know the answers.
From what I read about neurosarcoid lesions in the brain, they can look pretty much like MS lesions, but can also involve the meninges (lining of the brain) which MS NEVER does. But, if you don't get those lesions outside the brain, the clues are few.
I think you need to see a sarcoid expert to say whether you could now have neurocarcoid after having had a total spontaneous remission of your previous disease and not having any evidence of new active sarcoid in other organs. I assume the have at least done a chest Xray?
Quix
Quix
You can't just back off, stop treating and and not refer or do something.
I would like to tell they to hit the books and figure this out. The problem is, now that I have seen their reactions, I wouldn't trust them to do the right thing or to treat me correctly or to ever tell me they don't know the answers.
From what I read about neurosarcoid lesions in the brain, they can look pretty much like MS lesions, but can also involve the meninges (lining of the brain) which MS NEVER does. But, if you don't get those lesions outside the brain, the clues are few.
I think you need to see a sarcoid expert to say whether you could now have neurocarcoid after having had a total spontaneous remission of your previous disease and not having any evidence of new active sarcoid in other organs. I assume the have at least done a chest Xray?
Quix
Quix
If it won't confuse the issue too much, here's a page that helps explain the MRI difference between sarcoidosis and MS lesions.
http://www.radiologyassistant.nl/en/4556dea65db62#a4599773d13d9d
http://www.radiologyassistant.nl/en/4556dea65db62#a4599773d13d9d
Thank you so much for reading my post.
Yes, one of these neuro's was actually a MS specialist. I got his name from the MS Society web site. He was very nice and was ALMOST at the MS dx then..........came up the Sarcoid! When that came up he stepped WAY back and acted like there was no way he wanted to touch dx - ing me with MS with a hx of sarcoid.
Quix;
Like you said, from all that I have read, I should have had some other things going on within the 13 years of dx of Sarcoid, but I have not and Never had to be treated either.
So how does a disease pop up one day in the lymph nodes, go away, never have treatment, never had any other problems stemming from that dx, and then just decide to pop back up in the CNS? And from what I have read.....Neuro Sarcoid is nothing to play with! It is a very bad disease to have. And from what I have learned,.. able to be distinguished from MS! That is, if the doctor will take the time and interest in their patients, to get the proper dx.
Floridamom;
Is that the MS specialist that I told you about in Tampa? Perhaps I should get an appt with him. I live only about an hour and some change away from Tampa. Actually one of my daughters live there and is going to the University (USF) :)
Do you like him? Does he really seem GENUINE?
Jens;
Thank you, I will look at that link. Also, I do have copies of everything in a 3 ring binder to take with me to my appt's. I wonder, does anyone think that makes them feel intimidated???LOL
PS, The neuro I saw yesterday, that was my first visit with him. So, the (3) neuro's i have seen have all been in the last ummm, (7) months. All saying the same thing and running from the sarcoid word! Bad ,Bad, Sarcoid!!! (Geeze) you know what else I was thinking......IF and only IF it were neuro sarcoid or even suspected it was, Isn't it their job to find out for sure. I mean isn't that what their job is?
QUIX;
Are they being negligent for not further investigating? They just FREEZE and go no further when they are thrown "that word sarcoid". Wouldn't it be important to know for sure so that I can be treated accordingly? They can not just stop investigating!
Thanks you all,
~Tonya
Yes, one of these neuro's was actually a MS specialist. I got his name from the MS Society web site. He was very nice and was ALMOST at the MS dx then..........came up the Sarcoid! When that came up he stepped WAY back and acted like there was no way he wanted to touch dx - ing me with MS with a hx of sarcoid.
Quix;
Like you said, from all that I have read, I should have had some other things going on within the 13 years of dx of Sarcoid, but I have not and Never had to be treated either.
So how does a disease pop up one day in the lymph nodes, go away, never have treatment, never had any other problems stemming from that dx, and then just decide to pop back up in the CNS? And from what I have read.....Neuro Sarcoid is nothing to play with! It is a very bad disease to have. And from what I have learned,.. able to be distinguished from MS! That is, if the doctor will take the time and interest in their patients, to get the proper dx.
Floridamom;
Is that the MS specialist that I told you about in Tampa? Perhaps I should get an appt with him. I live only about an hour and some change away from Tampa. Actually one of my daughters live there and is going to the University (USF) :)
Do you like him? Does he really seem GENUINE?
Jens;
Thank you, I will look at that link. Also, I do have copies of everything in a 3 ring binder to take with me to my appt's. I wonder, does anyone think that makes them feel intimidated???LOL
PS, The neuro I saw yesterday, that was my first visit with him. So, the (3) neuro's i have seen have all been in the last ummm, (7) months. All saying the same thing and running from the sarcoid word! Bad ,Bad, Sarcoid!!! (Geeze) you know what else I was thinking......IF and only IF it were neuro sarcoid or even suspected it was, Isn't it their job to find out for sure. I mean isn't that what their job is?
QUIX;
Are they being negligent for not further investigating? They just FREEZE and go no further when they are thrown "that word sarcoid". Wouldn't it be important to know for sure so that I can be treated accordingly? They can not just stop investigating!
Thanks you all,
~Tonya
Well, Everyone has pretty much voiced my thoughts. Somehow I don't believe that the two diseases can't be distinguished somehow. What I have not yet been able to find out is whether "Neurosarcoid" (which I gather is not at all common) can exist without the disease being active in other organs. You are having very active neurological symptoms. Should you be seeing sarcoid activity in the rest of your body also?
I also get the feeling from here that your neuro is permanently stuck on the fence and will not move in your behalf. He seems far too comfortable with you in permanent Limbo. Heck, why not? He doesn't have your symptoms. Both diseases have treatments and, I think, some of those treatments overlap. I would have to do some reading to see if steroids treat neurosarcoid as well as garden variety sarcoidosis; ie. would the lesions shrink with steroid treatment?
As for who you should see - I agree with Jen. You should look for an MS Specialist with good ratings on the rate your MD sites. AND you should seek a real expert in sarcoidosis - aren't they rheumatologists? Perhaps you could start with one and have that one recommend the other.
My first neuro misread my MRIs also. I had a classic MS plaque. Granted it was solitary, but it was good sized, well-defined, ovoid, and oriented perpendicular to the ventricles. He called it a UBO and blew it off. I think UBO's are a trashcan for the weak mind when they show up in the presence of neurological symptoms. I understand the use of the term when they are discovered by accident in a healthy person.
Why don't you look at some of the sarcoid sites and see who is active in the research and who has the big clinics? I'll try to do the same when I can read better.
Quix
I also get the feeling from here that your neuro is permanently stuck on the fence and will not move in your behalf. He seems far too comfortable with you in permanent Limbo. Heck, why not? He doesn't have your symptoms. Both diseases have treatments and, I think, some of those treatments overlap. I would have to do some reading to see if steroids treat neurosarcoid as well as garden variety sarcoidosis; ie. would the lesions shrink with steroid treatment?
As for who you should see - I agree with Jen. You should look for an MS Specialist with good ratings on the rate your MD sites. AND you should seek a real expert in sarcoidosis - aren't they rheumatologists? Perhaps you could start with one and have that one recommend the other.
My first neuro misread my MRIs also. I had a classic MS plaque. Granted it was solitary, but it was good sized, well-defined, ovoid, and oriented perpendicular to the ventricles. He called it a UBO and blew it off. I think UBO's are a trashcan for the weak mind when they show up in the presence of neurological symptoms. I understand the use of the term when they are discovered by accident in a healthy person.
Why don't you look at some of the sarcoid sites and see who is active in the research and who has the big clinics? I'll try to do the same when I can read better.
Quix
My neurologist told me that the bright periventricular punctate lesions were UBOs, too. I didn't believe him then, and I don't now. I have problems with many of my functions, not just the ones affected by my right cerebellum.
Besides, MS is a disease that attacks the whole brain, not just the parts that have lesions. I'm going to bump up an old post by Heather about what her neuro said about lesion and axon damage. I've got it bookmarked as my link to this site, so I see it all the time.
I'm guessing that the spots on your MRI look either like granulomas or lesions, depending upon who's looking at them. However, it's very rare for somebody to have granulomas in the brain without involvement of any other organs.
I guess the real thing for you, Tonya, is finding a neuro that can conclusively determine whether you have neurosarcoidosis or MS. From what your neuro said, I don't think he's going to be able to do that. I suspect that you do have MS, and you've ended up with a neuro who can't admit that he doesn't know all the answers. I recommend that you find an MS specialist. Make sure you get copies of all your tests, and get thee gone from this neuro!
Besides, whether you have NS or MS, you need some immuno-suppressant therapy. If he's not administering that to you, you need to find somebody who will treat your symptoms.
Besides, MS is a disease that attacks the whole brain, not just the parts that have lesions. I'm going to bump up an old post by Heather about what her neuro said about lesion and axon damage. I've got it bookmarked as my link to this site, so I see it all the time.
I'm guessing that the spots on your MRI look either like granulomas or lesions, depending upon who's looking at them. However, it's very rare for somebody to have granulomas in the brain without involvement of any other organs.
I guess the real thing for you, Tonya, is finding a neuro that can conclusively determine whether you have neurosarcoidosis or MS. From what your neuro said, I don't think he's going to be able to do that. I suspect that you do have MS, and you've ended up with a neuro who can't admit that he doesn't know all the answers. I recommend that you find an MS specialist. Make sure you get copies of all your tests, and get thee gone from this neuro!
Besides, whether you have NS or MS, you need some immuno-suppressant therapy. If he's not administering that to you, you need to find somebody who will treat your symptoms.
Argh!!!! You must be very frustrated!! I know I would be with all you have going on!
Is the neuro a MS Specialist? I was told by 4 neuros that an LP was "overkill" and not necessary even though my symptoms persist and they all stated "with a negative RI you cannot have MS"!! They were all probably not the smartest bulbs in the chandeliers!
Anyways I just had my LP under Fluoroscopy today and it was not bad at all. I am seeing a MS Specialist in Tampa and I have confidence that he will help me figure this out even if it is not MS.
Can you go back to this neuro and tell him you want the LP as you know that per S society it is recommended to be done when the MRI is not conclusive. I bet Quix knows the Nero Sarcoid vs MS LP question.
Take care sweetie and I will be praying for you!!
Hugs!
Kristin
Is the neuro a MS Specialist? I was told by 4 neuros that an LP was "overkill" and not necessary even though my symptoms persist and they all stated "with a negative RI you cannot have MS"!! They were all probably not the smartest bulbs in the chandeliers!
Anyways I just had my LP under Fluoroscopy today and it was not bad at all. I am seeing a MS Specialist in Tampa and I have confidence that he will help me figure this out even if it is not MS.
Can you go back to this neuro and tell him you want the LP as you know that per S society it is recommended to be done when the MRI is not conclusive. I bet Quix knows the Nero Sarcoid vs MS LP question.
Take care sweetie and I will be praying for you!!
Hugs!
Kristin
Tonya ~
I'm sorry you're so frustrated. It sounds like it has been a long road for you. I know how much you would like a firm diagnosis. I don't know anything about neurosarcoid so I will not be much help to you except to listen and try to understand.
Have you seen an MS specialist? If not, I found that VERY helpful. I traveled 6 hours one way but it was well worth it. Perhaps give that a try and see if the doctor will perform any additional testing or have some insight.
Also, if you don't have disability/long term care insurance, you may use this undiagnosed time to get that taken care of. I unfortunately did not move quickly enough in that regard so I try to warn others before you get the MS label and its too late.
I wish you the best.
Niki
I'm sorry you're so frustrated. It sounds like it has been a long road for you. I know how much you would like a firm diagnosis. I don't know anything about neurosarcoid so I will not be much help to you except to listen and try to understand.
Have you seen an MS specialist? If not, I found that VERY helpful. I traveled 6 hours one way but it was well worth it. Perhaps give that a try and see if the doctor will perform any additional testing or have some insight.
Also, if you don't have disability/long term care insurance, you may use this undiagnosed time to get that taken care of. I unfortunately did not move quickly enough in that regard so I try to warn others before you get the MS label and its too late.
I wish you the best.
Niki
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