Is your doctor trying to decide whether your symptoms and test results show neuro-BD, or whether they're from MS instead? Here are some links to articles that may help. They give info on MRI results and other test results that can aid diagnosis. You may want to have a medical dictionary with you -- or at least a diagram of the parts of the brain -- while you look at these articles:
(1) Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/epdf
(See Tables 1-4 in the blue boxes for a summary of the info)
(2) Diagnosis and management of neuro-Behcet's disease: international consensus recommendations (2014)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4155170/pdf/415_2013_Article_7209.pdf
(Look at pages 6-14 for the final recommendations. The first 5 pages talk about how the researchers chose the symptoms and results to include in their recommendations.)
(3) Radiological findings in Behcet disease (2015)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4449986/pdf/PAMJ-20-51.pdf
(4) Technetium-99m-HMPAO SPECT and MRI of brain in patients with neuro-Behcet's syndrome (1998)
http://jnm.snmjournals.org/content/39/10/1707.full.pdf
(Shows how SPECT imaging can show brain lesions in some neuro-BD patients, even when their MRIs are normal.)
(5) Brain imaging in multiple sclerosis (2014)
http://emedicine.medscape.com/article/342254-overview
(Includes info on MRI, CT, and ultrasound imaging of the brain.)
(6) Radiology of multiple sclerosis (2000)
http://eradiology.bidmc.harvard.edu/LearningLab/central/bachiller.pdf
(Powerpoint presentation)
If you have a copy of "Essential Guide to Behcet's Disease" (2003), Chapter 3 covers the similarities and differences between BD and several other diseases (including MS).
You can see the most *recent* book's table of contents here: bit.ly/1vgpeNM
(2) Diagnosis and management of neuro-Behcet's disease: international consensus recommendations (2014)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4155170/pdf/415_2013_Article_7209.pdf
(Look at pages 6-14 for the final recommendations. The first 5 pages talk about how the researchers chose the symptoms and results to include in their recommendations.)
(3) Radiological findings in Behcet disease (2015)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4449986/pdf/PAMJ-20-51.pdf
(4) Technetium-99m-HMPAO SPECT and MRI of brain in patients with neuro-Behcet's syndrome (1998)
http://jnm.snmjournals.org/content/39/10/1707.full.pdf
(Shows how SPECT imaging can show brain lesions in some neuro-BD patients, even when their MRIs are normal.)
(5) Brain imaging in multiple sclerosis (2014)
http://emedicine.medscape.com/article/342254-overview
(Includes info on MRI, CT, and ultrasound imaging of the brain.)
(6) Radiology of multiple sclerosis (2000)
http://eradiology.bidmc.harvard.edu/LearningLab/central/bachiller.pdf
(Powerpoint presentation)
If you have a copy of "Essential Guide to Behcet's Disease" (2003), Chapter 3 covers the similarities and differences between BD and several other diseases (including MS).
You can see the most *recent* book's table of contents here: bit.ly/1vgpeNM
Are there cases of patients who do have both Behcet's and Multiple Sclerosis?
ReplyDeleteOur daughter was thoroughly worked up as an in-patient in 2013, including MRAs, repeated MRIs with and without Gadolinium contrast (brain/cervical/thoracic), 2 spinal taps, confirmed Optic Neuritis by OCT...she continues to be seen 3-4 times a year at a specialist MS center, and has been on Rituxan for 2.5 years, and only in the last 4 months has she begun suffering with repeated rounds of oral/genital apthous ulcers (thoroughly tested as non-venereal). Driving everyone to exhaustion.
Hi Penina,
ReplyDeleteYes, there are patients with both BD and MS. Here are some articles that you and your daughter's doctor(s) may want to read, if you haven't seen them already:
http://www.ncbi.nlm.nih.gov/pubmed/26486298
Akman-Demir G, Mutlu M, Kiyat-Atamer A, Shugaiv E, Kurtuncu M, Tugal-Tutkun I, Tuzun E, Eraksoy M, Bahar S.
Behçet's disease patients with multiple sclerosis-like features: discriminative value of Barkhof criteria.
Clin Exp Rheumatol. 2015 Nov-Dec;33(6 Suppl 94):S80-4.
Epub 2015 Oct 19. PubMed PMID: 26486298.
http://www.ncbi.nlm.nih.gov/pubmed/23739034
Neves FS, Ferreira RM, Pereira IA, Zimmermann AF, Lin K. Neuro-Behçet's disease, its mimickers and anti-TNF therapy: a case-based review.
Clin Exp Rheumatol. 2013 May-Jun;31(3 Suppl 77):133-40. Epub 2013 May 28. Review. PubMed PMID: 23739034.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4155170/pdf/415_2013_Article_7209.pdf (full article)
Kalra S, Silman A, Akman-Demir G, Bohlega S, Borhani-Haghighi A, Constantinescu CS, Houman H, Mahr A, Salvarani C, Sfikakis PP, Siva A, Al-Araji A.
Diagnosis and management of Neuro-Behçet's disease: international consensus recommendations.
J Neurol. 2014 Sep;261(9):1662-76.
doi:10.1007/s00415-013-7209-3. Epub 2013 Dec 24. Review. PubMed PMID: 24366648; PubMed Central PMCID: PMC4155170.
All the best to all of you -- I know this situation must be really hard for everyone.
Joanne
Table of Contents for latest Behcet's book: bit.ly/1vgpeNM
Thank you. This will be quite helpful.
DeleteJust a followup. Both GP and GYN totally agree this is Behcet's, awaiting appointment in Rheumatology.
ReplyDeleteIn the meantime, it turns out one of the other kids in the PMSA (Pediatric MS Alliance) with a Pediatric MS onset (she is now over 21) also has presumptive diagnosis of Behcet's and Lupus, secondary to her MS.
Thanks so much for the update, Penina -- all the best!
ReplyDeleteJoanne
Hello! My question is can you have NEURO Behcet's and MS? I am suspecting this as I seem to have neurological symptoms that go with both diseases.. My MRI has been interpreted differently by different neurologists..
ReplyDeleteTo be more precise in terms of symptoms, I have both the numbness, tingling, limb pain, bladder issues, brain fog, memory issues, but ALSO something which feels as brain stem inflammation - neck stiffness, headaches and a lot of cognitive issues.
ReplyDeleteUnfortunately, yes I've heard of some people who have been diagnosed with both.
ReplyDeleteThank you for your reply! Do you know what the recommended treatment is in such a case?
ReplyDeleteHi Joanne, I have my diagnosis now after 50 years! i am 54 years old and I have been suffereing from aged 4. Now I can see subtle neurological signs too, such as difficulty decoding spoken language.I also was found to have optic Neuritis during a recent bout with bi lateral pan uveitis and retinitis. Is inflammation of the optic nerve a sinister sign? Should I insist on an MRI? And finally what about the Sulphur Diet? Have you mush information about that?
ReplyDeleteHi Joanne,
ReplyDeleteTurns out that my daughter's MS doctor still has her case on her mind, so much so that last week while in London for the ECTRIMS conference, she sought out a consult with a Turkish collegue, and this was the result:
Dear Ilana,
Thanks for your mail. It was good to meet you last week in London and I am happy to hear that (pt name redacted)is improving.
Regarding your case I definitely agree with you that her CNS disease is not neuro-Behcet disease (NBD) and more likely to be MS. Her neurological presentation and progression as well as her MR images (neither cranial nor spinal) are not likely to be consistent with NBD. Whether she has systemic Behcet's disease (BD) or not is another issue. As far as I understand she had oral and genital ulcers and questionable skin lesions. She didn't have eye inflammation and we have no information of the pathergy test. If you send the photos of her ulcers I will be happy to consult them with our Behcet team dermatologists too. In summary if her BD is confirmed then I am more likely to agree that she has both BD (but not NBD) and co-morbid MS. Rituximab may also work in BD - there are a few case reports!
All the best,
Aksel Siva