Hi All, I am now a member of the SCLS club as my diagnosis has been firmed up. I am on Theophyline and terbulaine which I really don't get on with and for me seem ineffective as I have had two attacks since starting this treatment in January. I am very good at spotting the attacks as I monitor heart rate & weight frequently which together with muscle ache is a sure sign that I need IV fluids and then everything settles to normal in 24/36hrs. My immunologists are moving me onto IVIG now. They don't have NHS approval but they are going ahead anyway and will argue about funding when needed. (Our health system is very different here in the UK). They are considering starting on a lower dose of 0.5 g/kg every 3 weeks. If the attacks continue they will keep increasing the dose until the attacks stop. They have alot of experinence with IVIG and have not found any evidence that such high doses as 2g/Kg are necessary in SCLS. They also say that this is an immunosupressive dose which if it can be avoided should be. Although I can see the logic in what they are saying I feel a little uncomfortable with it. Would appreciate any views/thoughts from other peoples experiences. Thanks, Kevin

Hi. I don't blame you for feeling uncomfortable with it. The unfortunate result of this condition being so rare, is that most doctors are simply "experimenting" on us to find the right level of treatment. And with so little firm and accessible documentation to prove them wrong otherwise, it can feel intimidating to object to their methods. We also had to be very firm with our doctors and medical system to get on IVIG. And when they wanted to start my husband on a 1/2 dose every month, we were firm in receiving the full 2g/Kg dose. Does that mean my husband never had an episode again? No. He had one 5 months later. But, last year without the IVIG, we would have had 3 episodes by now. So, we know it is doing something, but we accept there are no guarantees. If you want the full 2g/Kg treatment, then feel free to stand up for yourself and be heard. It can take some time to learn how to drive the system instead of having it drive you, but it's worth the fight. Best of luck to you.

Hi First, sorry for my english . I discovered I had SCLS 2 months ago and it was my 4th crisis in 18 months . I live in Paris , France and started there IVIG / ClairYg. Apparently they started that treatment in 1995 and as of today 50% of the patients are ok after more or less one year . Regarding the rest they are continuing the treatments . My hospital Pitié Salpétrière , Paris . Regards Joseph

Josephite I was reading yur profile update and wanted to reply. I was NIH in Jan 2012.Dr Druey is in charge of all research and testing. I am on IVIG and have been since my visit with Dr. Pecker and being hospitalized after my visit with him. I have been on IVIG since that stay at New York Hospital. Since then I have had monthly IVIG treatments. I am still having some of the same symptons but very mild. After replying to Dr. Druey about these mild symptoms he asked my to return to NIH again this past June. I was sent a blood test kit so I could send samples down when i happen to have a episode. I went to the NIH and talked with Dr. Druey and he recommended I try spacing the IVIG over a couple days instead of instead of two consecutive days or go to 5% instead of 10%, or change the brand of IVIG. I have had two infusions since talking with Dr. Druey and I still get the headache and exhaustions/fatigue after the treatment for four to five days. I feel very bad at that time but not nearly as bad as before the treatments started in Jan. So in reality I have three possible good weeks out of the month.. Before the treatments I had several years of small episodes always being treated for dehydration/blood pressure. We finally started seeing a hemotologist which was on a monthly basis and she was checking me for everything. She finally saw an article on her flight to Chicago. All the symptoms that I had. She called the Mayo clinic and then NHI in Maryland. Then we got in contact with Dr. Pecker. It has been a long journey and we are finally able to relax a little and hope all will be better. Our hopes your husband will continue to improve. regards custom

Dear Joseph: Welcome to our SCLS community! You are very fortunate to live in the city where one of the most knowledgeable doctors on SCLS -- Dr. Zahir Amoura -- happens to work (at Pitié Salpétrière, of course). Let us know how you react to the IVIG treatments and what is the monthly dose that he is giving you (XXgr/kg) and for how many days (1 or 2). For your information, his success rate with IVIG, and that of many doctors around the world by now, is much higher than 50%, so you should be optimistic about your prognosis.

I take it from the lack of response to my question that there is no evidence that large doses (2g/kg) of IVIG are needed to get releif from our SLCS attacks.

Dear Krogers: A warm welcome to you as well! As background to your question, all dosages of various medications that have been prescribed for SCLS patients during the past several decades -- everything from theophylline (or aminophylline) and terbutaline, to steroids like prednisone, and lately to IVIG -- are based on the past effectiveness of those medications in treating *other*, far more common ailments such as chronic obstructive pulmonary disease (theophylline, mainly long ago) or immune thrombocytopenic purpura (IVIG). And none of those medications are officially approved for the prevention of SCLS or for the treatment of episodes of SCLS, anyway, so they are dispensed on an "off label" basis and they come without a proven, recommended dosage for SCLS patients. Having said that, and with regard to IVIG, there have been anecdotal reports that lower or less frequent dosages are not as effective in the prevention of episodes as the 2 gr/kg/month regimen -- but there is no hard, scientific evidence. To my knowledge, the current approach of most doctors is that since the downside risk (to organs, limbs and life) of having an episode of SCLS is so large, it is better to play it safe and prescribe the 2 gr/kg/month. After all, most doctors don't want to play "Russian roulette" with their patients -- they don't want the guilt or legal liability of having a patient of theirs die or suffer permanent damage because they were stingy with medication. However, patients should be aware that since IVIG is so very costly, doctors and hospitals are constantly under pressure from private medical insurers or from state-run health plans to prescribe IVIG only as a last resort, and to do so keeping the dosage on the low side -- and at times they may succumb to that pressure.

Hello we want to say hello as we are new to the site. I'm typing for my wife who is the SCLS patient. She is currently in the Cleveland Clinic i.c.u. for treatment. This will be her 8th. episode which always requires a 10 to 14 day stay at the hospital. We finally began our first treatment of ivig and are hoping for success. This disease has torn our life apart. Her episodes are every life threatening and traumatic.They happen about every month and are becoming increasingly worse. Has anyone with this disease experienced the same time line in hospital? How long should we expect to see results if any? How do we get the insurance to cover the cost? We lost her once and they were able to revive her. I just don't want that to happen again. Any help and advice is appreciated.

Dear Knackll: Welcome to you and your wife! Many of us can imagine what you've been through, because we went through something similar -- or much worse for much longer. Our hearts and prayers go out to you. In this site you should find answers to most of your questions, so take the time to read the "Disorder Details," "Disorder Resources," and "Community Expert" sections before getting lost inside many of these specific topic discussions -- and please share them with your doctors. Before answering your questions, let me request something of you: please ask the doctors there at the Cleveland Clinic to save all blood samples taken from your wife since arriving at the hospital, and making arrangements to have them shipped for analysis to Dr. Kirk Druey at NIH (see "Disorder Details" at the bottom). The blood should be sent via an overnight courier service chilled -- not frozen. For further instructions, they should contact NIH directly. (All you need to give is your authorization; the hospital will take care of the rest.) Now, here are some quick answers to your questions: _Has anyone with this disease experienced the same time line in hospital?_ Some of us have had few episodes over many years, others among us moved on to have frequent episodes of various degrees of severity. _How long should we expect to see results if any?_ In general, a monthly therapy with IVIG at the recommended dose of 2 gr/kg makes a noticeable difference from the start; for instance, if she has been having episodes nearly every month, you'll know that IVIG is working if in the next few months she has no episodes. _How do we get the insurance to cover the cost?_ Any IVIG administered in an ICU hospital setting is usually covered automatically, and with your wife's history, and given the supportive medical literature that has been published in the past few years, it should be fairly easy for your doctor to get pre-approval for monthly doses of IVIG going forward. If he/she wishes, have them contact Dr. Kirk Druey at NIH for further advice. Good luck and keep us posted! Fill out your wife's profile page with as much detail as possible (e.g., nature of past episodes and medications taken) and keep it updated from now on.

Knackll, First of all I am sorry you and your wife are dealing with this awful disease. I am a newer member of the community and my SCLS manifests itself differently than that of your wife. There are many patients on this site who have similar episodes like your wife. From my experience and from advice from Arturo ( the website expert for SCLS) the best way to get insurance to cover the IVIG is to have your advocate/ Dr. write to your insurance company explaining the medical necessity for IVIG. Dr. Druey, whose information can be found on the disorder resources tab for the SCLS community, is the leading expert in the USA on SCLS. He is running a clinical study at the NIH in Bethesda, MD.You can apply to this study which has helped many of us on this site. After being accepted to his trial and visiting the NIH, he also helped by writing a letter to my insurance company. The information for the clinical trial can also be found under the disorders tab. My insurance company denied me a few times before approving 6 months worth of treatments. I will have to continue petitioning every 6 months. Our disease is rare and with so little information the insurance companies try to say that IVIG is an experimental treatment. The proof and success rate of IVIG for the patients on this site alone should be adequate proof, but unfortunatly we are still having to fight for IVIG. As to the amount of time one needs to wait to see results from IVIG depends on the amount one is given. It seems to be the best success has been from 2g/kg over whatever infusion rate the patient can stand. Some patients on this site have started with lower doses and have still had episodes. Some patients have taken a few months of IVIG treatments to find relief. I think results will be different for most people. I am not an expert by any means and do not know as much as Arturo and some of the other patients on this site. I do know that I wanted to answer you as best I could, because when I was searching for answers waiting for a reply was painful. I hope this has helped some and best regards to you and your wife. Cristina

Dear aporzeca/Christina-first off thank you for your warm welcome and vast knowledge. I will ask the Cleveland Clinic for the samples if they still have them and if they will send them. Im not sure how they will react. We went to them for 2 reasons one, they are rated one of the best hopitals in the US. The second was they have a neurologist that was really interested in our case. We appreciate all the help and will advise back on her condition. I really believe she would have an interest in the N.I.H. i will discuss it. She currently is on her last dose of ivig. I will pursue this with the neurologist.

Knackll, You are not alone. I have had 2 very very close calls with long ICU treatments. It is frightening but you can get some control over it. First this forum is fantastic thanks to Arturo. Use it as the information is brilliant. The best advise I can give you is be very, very vigilant. When your wife gets out of hospital monitor heart and blood pressure and if you can get a monitor for heamoglobin level that is really good. This should together with the other symtoms (see info on this site) allow you and your wife to know at a very early stage when an attack is happening. Then get medical attention without delay. By doing this any attacks can hopefully be sorted out before it becomes life treatening I have had 6 attack in about 9 months and now I can almost feel it happening. For me stress seems to be a big factor. I am new to IVIG but it works for many people but do not be lured into a false sense of security. even if it works as attacks can still happen. I always have the 5 minute ICU consultation document which Arturo has put on this site and I give to the A & E people when I have an attack. This produces a rapid response and the correct tretment straight away. Best of luck to you and your wife.

Hi everyone. It's Lisa. My husband was writing in and set up my account when I was in the hospital last week. I was in the hospital 9 days. I'm glad I'm not alone. My husband told me about this site and the information on here is great. My episodes have been life threatening each time. I died at the end of March because my heart stopped and litereally was saved by the Cleveland Clinic the last 4 episodes. I had a pacemaker installed in April because of it. I always seem to get to the hospital just in time because I loose consiousness as my BP falls into the low 60's and sometimes 40's/20's. Then my lungs fill up with fluids. This time my lung collapsed one day, they tapped it and a several hours later it collapsed again and even around my stomach I filled up with fluid. It was the worst pain I've ever been in. For 3 days I suffered the fluid overload with my organs. My feet and legs swell a few days before my BP begins to drop then I end up in the hospital fighting for my life each time. I just started the Theo. I'm having a awful time with the Theo. Massive headaches, tremors and nausea. Anyone else having issues? I had the IV/IG infusion for 3 days while I was there and when I woke up after it, I had severe headaches with that. Over the weekend I developed welts, red raised rash all over my chest and it itches like crazy. I don't know if it's from the IV/IG or the asthma drugs. Anyone else?? Thanks.

Hi Lisa. I also get a rash from the IVIG. I am now taking a steriod pre med before the IVIG infusion and I am treating with a topical cream "Celestone" which is working well and significantly reducing the rash and itch. Warren

Unfortunately I had to discontinue the IVIG in May which I had been having for 6 months as my body could not handle it. My liver revolted and I had a "life threatening"(according to the specialist) drug induced hepatitis. My liver enzyme levels are going down slowly but I am still on prednisone. and will remain so for many more weeks Apparently this is uncommon but can happen in some individuals. I am not sure if there is more than one kind of IVIG here or not but am not allowed any drugs of any kind until I come right.

Hi everyone, This is the first time I have posted on this site. I check in every once in a while looking for information. I was officially diagnosed January of 2012. My immunologist has me on a theophylline, terbutaline, singular, prednisone combination yet I am continually ill. For whatever reason he wants to put off ivig for as long as possible. Right now he believes my continuous state of capillary leak is in direct correlation to the level of medication present in my blood and that adrenal insufficiency may be the coexistent condition presenting similar symptoms or triggering this constant state of capillary leakage. My blood work supports the coexistence of adrenal insufficiency and every time I am weaned off of prednisone I have a major capillary leak episode. I spend months at a time in bed extremely swollen with delibitating fatigue, fever, very little urine output and an overall feeling of malaise. I am lucky if I have the energy to shower most days, yet other days I am able to accompany my family to a meal at a restaurant. And for a few days every month I am in a semi conscious state. I sleep around the clock answer my husband in gibberish, consume little nutrition, rarely use the restroom and I have very little recall about what has transpired during those days or even how long I was in that state. Unfortunately I have no idea if this is the typical cycle of this illness. Each person appears to have some of the same symptoms and at the same time very different symptoms. I don't want to appear to just be complaining, (however it does feel rather good to vent my frustration), I am truly seeking advice.

I'm glad that you finally reached out, kimberoumayah! If you are taking theophylline, terbutaline, singular, and prednisone in combination and yet you are continually ill, then those medications are not working -- and your doctors are not helping you. My best advice is for you to insist that your current immunologist, Dr. Lauter, should immediately contact Dr. Kirk Druey, _kdruey@niaid.nih.gov_, tel. 301-435-8875, send over your complete medical history to him, and make arrangements for you to be examined at the National Institutes of Health in Bethesda, MD, right outside Washington DC, as soon as possible. During your stay, Dr. Druey will call in on as many NIH specialists as it takes to get to the bottom of your case, and they will come up with a definitive diagnosis and send you home with a recommended course of therapy. If Dr. Lauter refuses to refer you to NIH for a thorough examination and 2nd opinion, then you should ask him for a copy of your complete medical record and then find yourself some other senior immunologist or internal medicine doctor, either affiliated with Beaumont or with Harper Univ. Hospital, and have him/her take a fresh look at your case and get you referred to NIH ASAP.

Thank you so much for the advice. My gut instinct was exactly as you suggested. I was just afraid to make that decision. My entire family has been urging me to do exactly as you have suggested as well as to try the Mayo clinic. I had a rough road to diagnosis, I was told by many health professionals that I was simply crazy and nothing was wrong with my health. I was fortunate enough to have an amazing P.A. and a psychiatrist (whom I began seeing after I was termed "crazy" by two respected M.D.'s) who would not take no for an answer. My psychiatrist treated me during a sever attack, I had gained 23 lbs in water and could not use my right hand, she took one look at me and got on the phone and made calls until someone agreed to see me for a consultation. I have been a little reluctant to move forward, based on my fear of experiencing ridicule from a new health care professional. Thank you for the encouragement. I am glad I finally reached out too!

kimberoumayah, Just to give another word of encouragement and reference to let you know, Arturo has helped many people on this site. I am one. He reached out to the now retired specialist/Doctor(Greipp) from the Mayo clinic and they were able to convince my doctor to get me on IVIG. Dr. Druey was of great help also. Please try and get to the NIH. I spent a week there with Dr. Druey and his staff. He confirmed that I should go on Theophiline since I was having 'mini' episodes and later that summer had another major one. From there I went on IVIG. It is working for me as I have not had a symptom since July of 2011. I know it is hard to go against a doctor, but I was prepared to do so, until my doctor came around. There are some minor side effects with IVIG, if you go on it, but I can deal with them with some Benadryl and Tylenol/Ibuprofen. Good luck to you and be strong.

hello i"m sorry for you but wellcom her between us i hope you the best weshes you have to know that for me i get my way to have my first dianiose in this coumenty , i just came back last week from paris where i met Dr AMURA that he conferm the IVIG dos 1g/kg which i start for the first year by 2g/kg since 2010 right now every thing is going so will , i don"t now that is in london easy to git IVIG ,i thik it is the best way to win with scls wisch you the best yaser rome

Dear Kinmeroumayah, I just readi your story. Since SCLS is à idiopathic disease, wich mens no exact mechanism is known, and even no specific test is avaliable the road to diagnosis and treatment is not à simple one, and on top of that things are misjudged, due to the rare character, as your story is telling again. SCLS is described as a disease of typical cyclic presentation with swelling and regaining normal shape again. But also à more chronic status is described in about ten percent, which might be even harder to prove to be SCLS. Your story with à chronic persistent state of swelling in combination with à severe disability to perform all kind of things, which in normal life you would not questioning about, is very familiar to me. As you can find on this site more people in this community have similar stories, although it is not the majority of them. I wonder if the discussion of Side effects of IVIG is also some of the disease inspeld, tranforming to another shape of presentatiion. So to answer your question: having such a prolonged exposure, it Is not typical, but as you stated already, all cases are in some extend different in behaviour, Because of à similar story and IVIG seemingly à bridge too far my immunologist started with à new approach with is very promising untill now. Keep your head uP ! Hiltjo

Thank You All! I am literally in tears as I respond to all of your encouraging words. I was fortunate to have 3 years of lab results which proved beyond all reasonable doubt that what I have been suffering with was with out question SCLS. I also had a hospital stay in January of 2012 where the ER Dr.'s performed many tests before they sent for my current immunologist. He ordered many more tests and then visited me in order to obtain a complete medical history. I had scheduled an appointment to see him six weeks prior to my hospital visit which was to occur the following week. So fortunately his office already had my complete medical history as well as all of my previous lab results. He was able to review all of the information I had forwarded to his office before visiting me once again and then discharging me with the knowledge of my follow up appointment already scheduled. When I went to my appointment he was almost excited by his ability to give me his confirmed diagnosis. It was divine intervention or luck which ever you prefer that led to my diagnosis. He had been consulted by a nephrologist at the Mayo Clinic regarding another patient with similar symptoms and a suspected SCLS diagnosis. This illness was entirely foreign to my specialist and with out his research concerning the other patient,he confessed that he may not have been able to definitively diagnose my condition. His research on this condition combined with my lab results led to my diagnosis. And now for whatever reason my immunologist has been unwilling to accept that this course of treatment isn't working. But thanks to Arturo and all of your encouragement I was able to stand up to him yesterday at my appointment. I made the request that my Dr. Reach out to the NIH for a second opinion and I made a request for my medical records. He has agreed to reach out to NIH. He added that once IVIG treatments are started further testing will not be an option. He also informed me that his other patient is receiving IVIG treatments and is responding well to these treatments, but IVIG improves many conditions not just SCLS. Once again Thank you for your support and encouragement. I am just praying that NIH agrees to see me for a second opinion.

Hello everybody, i want to introduce my wife Natalie. She was diagnosed with SCLS Oct. 2014. That was her third attack with severe cerebral involvement (brainstem, hippocampus, thalamus) 2009 is when she had her first episode after a respiratory infection with generalized edema, headache, nausea and disorientation. 2011 is when she had her second attack again with a respiratory infection with generalized edema, headache, nausea, progressive disorientation and impaired consciousness up to coma and bithalamic edema. A couple of years ago a monoclonal gammopathy was diagnosed. Right now my wife is in a rehabilitation clinic in which the effects are treated.This effect are like stroke symptoms. It is planned to start a prophylactic therapy in the hospital "Alfried-Krupp-Krankenhaus, Essen, Germany" with IVIG monthly (1-2 gram per kilogram) in february 2015. My question is: Do you know a SCLS-specialist in germany or around to get another assessment ? Thx in advance! Lueder

Dear Lueder: Welcome to our Community! I'm very sorry to hear about your wife's ordeal, because brain-related issues are extremely rare in cases of SCLS. Did the doctors say that she had a capillary leak and thus edema in the brain which caused the problem? And has she had the usual leaks in her arms and legs? Anyway, no, I don't recall any articles on SCLS written by any German doctors, but since Paris is not that far, and medical care within the EU is now more flexible than ever, you might consider making an appointment with the leading European authority on SCLS, who is Dr. Zahir Amoura, see his contact information on the tab "Disorder Details," under "Tips for Living with the Disorder." You should also consider asking her main doctor to write an email requesting an opinion, and offer to send in her medical file for that purpose, to Dr. Kirk Druey at NIH here in the USA, see the section right below the one which gives Dr. Amoura's contact information for Dr. Druey's information. I hope that your wife will respond well to the IVIG treatments, so she may concentrate on her recovery from past episodes and not have to worry about additional damage from future ones.

Hi Lueber, Other than the Paris group, I am also not aware of any other doctors with experience with SLCS in Europe. You should try and contact them. How sure are your doctor of the SCLC diagnosis? The symptoms you describe are not typical of this condition. The key is whether there is increased haemoglobin concentration and reduce serum protein/albumin levels during the episode. Best wishes, Kevin

Hi Lueber, I am so sorry to hear of your wife' s condition, and wish her well. The reason I post is that I too have had Cerebral oedema (mild) with each attack which is mainly pulmonary oedema. I started on IVIG 2g/kg monthly, but it wore off after 3 weeks, and I had another milder attack; and so I went to 1g/kg fortnightly, and since then (4 months), I have not had an attack. My haematologist measures my serum IGG just before each infusion, and while ever it is just raised, we are happy. The point is that there are still large gaps in our knowledge, but firstly, yes, cerebral oedema can and does occur; secondly IVIG works, and works well as long as you can fine tune the dose according to blood tests. Please note that raising the IGG too much can cause a dangerous hyperviscosity syndrome. I wish you and your wife much success. My cognitive function has pretty well recovered. John

Thx a lot for your response and your wishes ! @krogers(Kevin): Yes, the doctor is pretty sure. The laboratory tests revealed an elevated hematocrit, an increased hemoglobin and hypoalbuminemia. Add to that the diagnosed monoclonal gammopathy. Thus, the diagnostic criteria for an idiopathic cls were fullfilled. @Jcarson (Jonhn): I will forward your comments regarding the therapy to our doctor. My wife works very hard to recover her cognitive functions but it is still a long way to go and it is not sure which limitations will remain. So, keep the finger crossed ! Thx Lueder

Hello Lueder. I'm so sorry to hear of your wife's illness. My husband's first episode in 2009 also involved Cerebral oedema. Some of the effects on him were also stroke-like. He is blind, deaf, and weaker on the same side of his body. He also experienced a couple of months of straight delirium, although it's expected that a lot of different things caused that (he went into multi-organ failure, so almost no system was unaffected). I wish you both all the best and I hope your wife does well in rehabilitation.

Dear Lueder, dear Natalie, I just wrote an email to Professor Zahir Amoura asking him to confirm the reference coordinates for SCLS in Paris. As soon as I will get his response, I will forword the information. Best regards. Claude Pfefferlé, Switzerland. cn.pfefferle@bluewin.ch Liebe Natalie, Liebe Lüder, Ich habe gerade eine E-Mail Herrn Professor Zahir Amoura geschrieben, um Ihn zu bitten die Referenzkoordinaten für SCLS in Paris zu bestätigen. Sobald ich seine Antwort bekommen will, werde Ich die Informationen überweisen. Freundliche Grüße. Claude Pfefferlé, Schweiz. cn.pfefferle@bluewin.ch

Dear Claude, Thx a lot ! I also have written mails to Dr. Amoura and his secretary but got no answer by now. Seems to be difficult to get in contact with Dr. Amoura. Nevertheless let me know when got a response. Best regards Lueder Lieber Claude, vielen Dank für Deine Unterstützung. Per Mail habe ich es bereits ebenfalls probiert - auch über sein Sekretariat. Bisher allerdings habe ich noch keinerlei Antwort bekommen. Es scheint also nicht so einfach zu sein hier einen Kontakt aufzubauen. Wenn es Dir gelingt, dann lass es mich bitte wissen. Liebe Grüße Lueder

I tried to contact them a couple of time about a year ago. Got no reply.

Hi Kevin (krogers) I read your original post in this thread and was interested to know where you are in the UK and who your consultant is. I'm in Lincolnshire and my wife's immunologist has recently agreed to put her forward for ivig to treat her chronic SCLS condition. He thought that there was no-one in the UK receiving this treatment, so it may add weight to the argument for funding if there are previous successful cases, as yours sounds, to refer to. As I am sure you know ivig for SCLS is classed as grey in NHS parlance and therefore has to be argued for. I think he is fairly confident of getting the funding, but apparently there is a national shortage of ivig at the moment and it may be 6 months before it is again available for new patients. Kind regards, Tim

Dear Lueder, I received no response from Prof. Amoura. However I give you the exact address : Professeur Zahir Amoura Service de médecine interne 2 CHU Paris-GH La Pitié Salpêtrière-Charles Foix - Hôpital Pitié-Salpêtrière 47-83 boulevard de l'Hôpital 75013 PARIS FRANCE e-mail : zahir.amoura@psl.aphp.fr Téléphone : +33 1 42 17 80 79 secrétaire Téléphone : +33 1 42 17 80 01 bureau du Prof. Fax : +33 1 42 17 80 32 e-mail secrétariat : sophie.goulard@psl.aphp.fr Best regards. Claude P.S. You can contact me by e-mail : cn.pfefferle@bluewin.ch

Hi Tim, I live in Kent and go to King's College, London. My consultant is Prof Ibrahim, Dept Immunology. I did not have any problem getting IVIG as I was very unstable and nothing else worked. How is your wife? Please feel free to contact me: kevinrrogers@yahoo.com 01959 563839 Best wishes, Kevin

Hi all, i got response from Dr.Amoura per Email. :-) I think, the secret is to mail not directly to Dr. Amoura. It seems that he don't read his mails himself. I send my questions to his secrétariat(sophie.goulard@psl.aphp.fr) and reminded her 5-6 times. Last week. 5 weeks since i send my questions the first time, she forwarded it and finally yesterday i got an answer from Dr. Amoura. Don't understand me wrong - i'm very glad and thankful about the response but it was very tiring to remind them again and again. Best regards.