=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#91, 31 March 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ----- == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. Currently there are == == 210+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == But be advised that if there are too many messages per == == day, researchers, international readers, etc. will be == == dropping out because of cost & time considerations. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. re: wheel chairs 2 .. Phosphate and parathyroid disorders associated with ALS 3 .. breast implants & ALS (1) ===== re: wheel chairs ========== Date: 31 Mar 94 14:28:59 EST >From: Charles M Ward <72567.400@CompuServe.COM> Subject: Re: wheel chairs Hi, My name is Mike Ward and I have had ALS for 8 years. I have a Rolls Power Arrow XT with a Laybeck full recliner. I have found the full recline feature very valuable. I can lay back for pressure relief, To watch the world go by and even to sleep overnight. Now that I am totally paralyzed the recline feature is used to push me back in the chair and aid in positioning. I think a recline feature is very important. As I progressed over the years I found I would recline more and more to keep my head from falling forward. One consideration with a full recline chair is that it is difficult to mount a respirator on one and retain the recline function. In the end I designed a simple sliding tray mount that cost $500 to make. I am happy to share the plans with anyone who asks. One other consideration is how much this ends up weighing. My chair with me in it weighs 633#. This requires a heavy lift hoist of 800# capacity. So size your vehicle with this in mind. Hope this helps and I am happy to answer any questions. Mike Ward (2) ===== Phosphate and parathyroid disorders associated with ALS ========== >From: Donna Lee Burke Subject: Phosphate and Parathyroid Disorders Assoc ALS Date: Thu, 31 Mar 94 13:27:42 PST Does anyone have any information or experience in their diagnosis with the information given in this article written by Bernard M. Patten and W. King Engel; Neuromuscular Disease Division, Department of Neurology, Baylor College of Medicine, Houston, Texas 77025 The Title is "Phosphate and Parathyroid Disorders Associated with the Syndrom of Amyotrophic Lateral Sclerosis". My brother-in-law has been diagnosed with ALS. We are in need of help to find doctors that are open or have experience with patients having similar diagnosis as my brother-in-law. Philip has written a letter with the help of his human resources personnel at work. I am going to enter it here because he explains best his experience and needs. If anyone can give any feedback to any aspect of his letter, it will be greatly appreciated. Especially we need a doctor who has experience with this type of case. "I am a 41 year old man who after months of seeing doctor after doctor has been diagnosed at Santa Theresa hospital in San Jose as having a motor neuron disorder-probably A.L.S. After being told by my neurologist at "---" that there wasn't really anything they could do and after "---" refused to authorized payment ($340) for an examination leading to possible acceptance in an experimental treatment program at the Norris A.L.S. Center at Pacific Medical in San Francisco, I contacted the M.D.A on my own and was given an examination at the center financially covered by an M.D.A. grant. I was examined by a neurologist specializing in treatment of A.L.S. and motor neuron disorders. However, the doctor told me I could not be accepted into any treatment program for A.L.S. because in her opinion I may not have A.L.S., but instead may have a problem with my parathyroid gland (hyper parathyroidism). A condition which is treatable through surgery. She based her opinion on the results of blood tests and a muscle biopsy in my medical records from "Kaiser Santa Theresa" hospital. The doctor explained to me that out of 300 A.L.S. patients seen she had seen only 7 with the elevated levels of calcium and parathormone that she saw in my tests. She told me that out of those 7, 3 patients elected or were suitable candidates to have this surgery done and after the surgery all 3 patients improved. She further stated that although these cases were the extent of her personal experience, there were other studies and other doctors around the country and the world whose conclusions and statistics would add weight to the confirmation of this diagnosis. This is one doctors opinion. There is no iron-clad guarrantee that this surgery is the answer to all my problems. I understand and accept this. The doctor at the A.L.S. center made it clear that I could not be accepted into any A.L.S. treatment program until the surgery was done. This doctor told me that it would be hard to convince other doctors who had not had previous experience with this syndrome that this surgery was necessary and could save my life. I am finding out now that this doctor was right about that. After calling every day and leaving a message for 5 days in a row, my neurologist at Kaiser finally returned my call. He told me he was skeptical of the other doctor's opinion but would refer me to an endocrinologist. When I went to see the endocrinologist it was clear to me from the beginning that she did not believe in this diagnosis, that she came into this examination already predjudiced against believing that this was a possibility. She was testy and condescending toward me from the start and was so obsessed with telling me what an expert she was in her field that I could not get a word in edgewise. Her conclusion was that the levels of calcium and parathormone that she saw in the blood tests, while above normal, did not in her opinion indicate hyperparathyroidism. When I became upset at this she suggested further tests, which have been done. I became upset, got dressed and left without trying to better explain to her the other doctor's opinions and conclusions. I know this was a dumb mistake on my part but I was convinced that her mind was closed on this and that I would not be able to change it. She also expressed her opinion that the symptoms I show are not connected to hyperpara- thyroidism. I had looked in a college anatomy book before I went to see her and in it were the following symptoms: 1) Depression of nervous system which leads to abnormal reflexes and weakness of the skeletal muscles. 2) Formation of kidney stones as excess calcium salts precipate in the kidney tubes... I display all of the symptoms listed in 1 and 2 and have had 2 kidney stones in the last two years previous to coming down with the other symptoms. The doctor at Kaiser went on to say that if she saw something different in the tests she ordered that she would investigate further and maybe at some point surgery might be recommended and then if I was a candidate surgery might be scheduled. But she is talking about weeks and possibly months here and time is something I am quickly running out of. She told me that the results of the tests she ordered would take 2 or 3 weeks to come back but the people in the lab said they would be back in 4 or 5 days. I don't know who's telling me the truth. I would like to make it clear at this point, that I am not writing this letter with the intent of threatening, insulting or blaming anyone or any institution for my condition, but the truth is I am running out of time and I don't feel that I'm getting the care I need. I underdersand that the levels of calcium and parathormone in my blood tests may be only "BORDERLINE" high and that there may not be signals that jump right out at someone, and I understand that my symptoms are not commonly associated with hyperparathyroidism, but nobody at Kaiser even seems willing to explore the possiblitities beyond a token examination and vague promises of we'll see. They seem more willing to just let me waste away and die than to try something that has already been proven to work in some patients by other doctors in other places. The important thing to understand is that I have relatively little to lose and much to gain by having this surgery and having it done as quickly as possible. If an exploratory surgery is done and my parathyroid glands are found to be normal than I am still looking at A.L.S. I understand and accept this, but at that point I will be eligible to be involved in experimental treatments for A.L.S. and have some hope of being helped through those programs, but without the surgery I have no hope. Also, if the parathyroid glands are found to be malfunctioning there is hope that I may return to completely normal. I feel that you can probably find doctors on both sides of this issue and the possibility of full recovery is too great a chance to be put aside or put off because it doesn't fit with everything one doctor knows-nobody can know everything. In conclusion, I would like to point out that I am rapidly losing the ability to walk, some muscles in my legs and feet do not function at all, all of them are weak and steadily getting weaker. The muscle twitches have extended through most of my body and what I fear most is that the doctors are going to dicker and discuss this until more of my body is involved, particularly the muscles that control my respiratory functions at which time they will decide that I'm not healthy enough for surgery anyway and no further discussion is needed. I need this surgery now, while I am still on my feet and healthy enough to survive it. I cannot afford to waste precious days and weeks arguing about whether or not it would be necessary under normal conditions. Mine are not normal conditions and somebody needs to realize that before it's too late. I am going to have this procedure done whereever and by whomever I can find to do it. I would like to have this done within the scope of my health benefits plan if possible, but I will not limit myself and my chances for recovery and for life with concerns of financial comfort. I am sick. I NEED HELP. I NEED A DOCTOR OR A SYSTEM WHO CAN TREAT ME like a human being who NEEDS HELP, not like some nameless, faceless number on a chart. Sincerely, Philip Does anyone have these symptoms? As an update the hospital is going to do a scan on his neck. However, the doctors are still reluctant to follow through. Are there any doctors you know who have experience with this kind of diagnosis? Thank you Donna-Lee Burke (3) ===== breast implants & ALS ========== According to a copyrighted article in BREAST IMPLANT LITIGATION REPORTER ( March 11, 1994) entitled, MANUFACTURERS, DOCTOR, HOSPITAL DENY PA COMPLAINT COUNTS ... Three breast-implant manufacturers filed an answer Feb. 16 in Philadelphia Common Pleas Court generally denying claims by the family of a Philadelphia woman that she developed her fatal amyotrophic lateral sclerosis (ALS) as a result of defects in her breast implants (Bernita Ford and Warren Ford v. Inamed Corp. et al., PA Ct. Com. Pleas, Philadelphia Cty., April Term, 1992, No. 135; see Breast Implant LR, Feb. 25, 1994). == end of als 91 ==