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visits to consultants

rareshare5050 Message
2 Sep 2018, 04:48 PM

i would just like to know how often people with SCLS visit their consultants.....i had a visit recently and they dont want to see me or have my blood tested for a this what is recommended.....I'm not happy with this, i have been well for ages but i know im not why do i have to wait a year to be checked.....i would appreciate any advise i could get for you all out there....looking forward to hearing from you please


Lolaudesi Message
2 Sep 2018, 09:40 PM

Hello, we are from Argentina, it is my husband who has the disease diagnosed 1 year ago. I am a doctor, and as we all know, while you are well there is no blood study to predict an attack. Afterwards the consultations will obviously be based on other necessary health controls, for example the state of monoclonal gammopathy. I think doctor is based on your response to treatment and your latest laboratory tests. Greetings. lorena

aporzeca Message
3 Sep 2018, 01:31 PM

Welcome to our Community, rareshare5050, and we would appreciate your telling your story in your profile page, currently empty, so we may respond more appropriately to your posts.  For example, a statement like "i have been well for ages but i know im not cured" begs for an explanation of what therapy has enabled you to remain well.  Besides, there is a great deal that remains unknown about SCLS, so we are still learning from each other's stories -- and they have proven life-saving in years past.  Also, I'm not sure who is considered a "consultant" under the British healthcare system, so I'll presume you mean a specialist physician as opposed to a family or other primary doctor.

At the beginning of our medical journey, the typical SCLS patient needs the support of a team of physicians beyond one's family or other primary doctor, such as emergency-room and intensive-care physicians, orthopedic surgeons, and a hematologist, allergist or immunologist.  But once our diagnosis has been confirmed at a major, university-affiliated medical center, often with the assistance of Dr. Kirk Druey at the U.S. National Institutes of Health (Bethesda, MD) or Dr. Zahir Amoura at the Hôpital de la Pitié-Salpêtrière (Paris), and we are discharged to home, then what we need the most is a mature, competent and compassionate physician who is affiliated with a major (preferably, university) hospital and who is helpful in coordinating our long-term care by providing referrals to good specialists as the need arises. 

This may or may not be the family or other primary doctor we all had before being diagnosed with SCLS.  Many physicians are clearly uninterested in patients with rare diseases because we often take up too much of their time, and they signal that to you -- and also because one realizes that not all such physicians are competent or compassionate enough, or have the necessary network of specialist colleagues, to care for someone with a complex illness.

Furthermore, many of our patients come out of their traumatic episodes of SCLS with limb and (less frequently) organ damage, including psychological damage, such that access to the specialists from physical therapists to psychologists who can help us put our lives together again are vital to our recovery.  Many of us also discover that we need a hematologist, allergist or immunologist to manage our preventive therapy -- especially long-term treatment with expensive immunoglobulins, which under some healthcare systems a mere primary physician may not have the authority to prescribe.

As concerns "being checked" periodically, there is no preventive check-up for SCLS, so the most important thing is that you are followed by your family and primary physician as you normally should, at least through annual blood and urine samples, for the onset of other (often age-appropriate) conditions unrelated to SCLS, such as diabetes, heart disease and cancer.  Moreover, if you have an MGUS in your blood (about 80% of adults with SCLS have it), as Lorena has rightly mentioned, it should be monitored (and remain low and stable) to ensure that you are not among the minority of MGUS carriers, most of whom do not have SCLS, who go on to suffer from multiple myeloma or other plasma-cell or lymphoid disorder.

krogers Message
9 Sep 2018, 07:57 AM


I am also a SCLS patient in the UK.  I would very much like to hear your story and experience.  As far as I know there is no other UK members on rare share that have been confirmed case of SCLS.  I did try to help one other case but they never responded.

I see my immunologist in King's College Hospital, London.  At present I see the consultant every 6 months and have a MGUS capilary electrophoresis assay (to check the levels) every 12 months although I sometimes have to be proactive to make sure this is done.  As the turnover of doctor in the immunology, department I often see different doctors.  To be honest I usually educate them about the condition as they know nothing about the SCLS and the appointment are not very useful.  As long as I have no SCLS episodes it effectively lets keep going as we are.  I was a little shocked however after one appointment a doctor commented about how long we should continue with IVIG as if they were considering stopping this.  I have prepared to fight this if it does happen, but at my last appointment it was not mentioned which was a relief.