Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Hi Leanne, welcome to this group, these people are extremely dedicated and knowledgeable. I have never heard of the type of MS you are talking about. What is it and how is it different from other MS types? Gwen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Hi Gwen and thank-you for the welcome. I do not have an objective laboratory confirmation of MS, but sadly I think I do have this sub-type of MS. If you do an Internet Search for Hereditary Biochemical Multiple Sclerosis, you will find the work of Prof. Kotze et al out of Stellenbosch University. Here is the web site, http://junior.apk.net/~rnr/research.html. The Related Publications, there are five listed, I can only open the 1st and the Leanne, This is interesting to me, because I get the flashes of light in the peripheral of my vision, and my neurologist, who is an MS specialist, had never heard of them before. I saw an eye doctor, and he could find no reason for them either. They are listed as a 'Telltale Sign' of this illness. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 > Hi Leanne, > welcome to this group, these people are extremely dedicated and knowledgeable. > > I have never heard of the type of MS you are talking about. What is it and > how is it different from other MS types? > > Gwen -------------------------------------------------------------- Hi Gwen and thank-you for the welcome. I do not have an objective laboratory confirmation of MS, but sadly I think I do have this sub-type of MS. If you do an Internet Search for Hereditary Biochemical Multiple Sclerosis, you will find the work of Prof. Kotze et al out of Stellenbosch University. Here is the web site, http://junior.apk.net/~rnr/research.html. The Related Publications, there are five listed, I can only open the 1st and the last. However a search for Dr. Kotze...she is very published on many genetic articles. You'll find more of her on the web. One of the people involved in the research has this form of MS with porphyria symptoms. They have already proven that in 10% of the MS population tested, a dysregulation of iron at a cellular level is involved, and non- detectable using current laboratory methods. They have mapped out the NRAMP 1 gene that controls iron reguation and have found in these patients the gene is abnormal. This sub type of MS....Hereditary Biochemical MS, has abnormal porphyrin involvement. Their case study in one published article had porphyrin levels identical to mine. And I do at times have low ferritin levels...and many in my family with overt anemias. All of my adult life I have had an elevated MCV. This explanation fits my reality well. A quote from this study..... " This pertians to the fact that iron overload may predispose an individual to virus infection, while on the contrary, inadequete supply of iron may impair immune function. " I have been corresponding with Prof. Kotze, forwarding her my various consult notes, lab reports, the known medical history of my maternal grandfather's ancestors, many premature deaths, primarily female infants, and many autoimmune diseases still among the descendants. Nice to meet you! Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 > This is interesting to me, because I get the flashes of light in the > peripheral of my vision, and my neurologist, who is an MS specialist, had > never heard of them before. I saw an eye doctor, and he could find no reason > for them either. They are listed as a 'Telltale Sign' of this illness. > Carol --------------------------------------------------------------------- Carol, I hope you put your name forward to participate in their next gene study. Wonderful if this work has the answer for some (everyone would be nice to!) When I first read the various articles on this, it fit like a glove for me. Two years ago I was doing a search on Pub Med and stumbled across the odd article on MS and porphryia. I was alarmed as I had long thought many of my symptoms were typical of MS. One of my physicians assured me that there was no association between MS and Porphyria. Then last year when I asked if the dystonias were part of the Porphyria or another disease, she told me to get on the net and start searching. I did. Have reviewed serveral theories on MS/porphyria and Dr. Kotze's work on Hereditary Biochemical MS just landed right on me. She is a grand lady and I hope you find your way into her next study. Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 because I get the flashes of light in the peripheral of my vision, and my neurologist, who I GET THESE TOO AND ACTUALLY I GET THEM A LOT, ONCE I LOST MY SIGHT AND COULD ONLY SEE THE LIGHTS WAS ON MY WAY TO DISNEYLAND AND SPENT THE ENTIRE TIME IN THE HOSPITAL. THOUGHT IT WAS A STROKE (IT WASN'T) GWEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 They are listed as a 'Telltale Sign' of this illness. CAROL. WERE DID YOUREAD ABOUT THE FLASHING LIGHTS AT? GWEN-BEHIND ON E MAIL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 site, http://junior.apk.net/~rnr/research.html. The HELP, I cannot GET TOT HIS LINK EVEN WHEN I TAKE THE HTML OFF. GWEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Nice to meet you! Leanne NICE TO MEET YOU TOO LEEANNE, I HAVE A HUGE AMOUNT OF FAMILY MEMBER WITH AUTO IMMUNE DISEASE, INCLUDING MS AND ALS. THIS IS ALL VERY INTERESTING. ARE THE TREATMENT OPTIONS THE SAME OR DIFFERENT? GWEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 I hope you put your name forward to participate in their next gene study. Leanne, Yes, I filled out the form and checklist, but there are 3 or 4 symptoms that I don't have. We'll see what she says. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 HELP, I cannot GET TOT HIS LINK EVEN WHEN I TAKE THE HTML OFF. GWEN You don't want to take the html off, you just want to take the period off that follows it. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 In a message dated 06/27/2001 4:06:43 PM Eastern Daylight Time, gpbb44@... writes: > > site, <A HREF= " http://junior.apk.net/~rnr/research.html. " > http://junior.apk.net/~rnr/research.html.</A> The > > > > HELP, I cannot GET TOT HIS LINK EVEN WHEN I TAKE THE HTML OFF. > GWEN > > Hi Gwen - Just remove the PERIOD after the html and you'll get there fine. http://junior.apk.net/~rnr/research.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Dear Duncan, A Please try some of the Diets msntioned in earlier letters. I probably have S/P M.S. the DIET WHICH HELPED ME is called EAT RIGHT FOR (4) YOUR TYPEa by Dr. D'Adamo,available from Amazon.co.uk, or W.H., there is a paperback version called THE EAT RIGHT DIET. hIS WEBSITE is WWW.dadamo,com The theme is that our blood group contains the key to our ANCESTRY, and when we depart from these patterns of eating, we are likely to dwvelop all kinds of ILLNESSES. I have been on the diet for nearly 2 yrs NOW, AND HAVE NOTICED A great improvement in my condition. YOURS SINCERELY ELAINE KELLY >From: KEYSDT@... >Reply-To: mscured >To: mscured >Subject: New Member >Date: Fri, 12 Oct 2001 18:29:30 -0000 > >Hi everyone >Thank you for allowing me to join your group and a big thank you for >the welcoming emails! >My name is Duncan, Iam 44 yrs old , live in London UK and diagnosed >with r/r MS 4 yrs ago. >As you maybe aware it is nearly impossible to be prescribed beta >interferon in the UK. >Therefore I am limited to H B O sessions and I do get some benefit >from this . >Hope to be considered for a trial of a new drug from Biogen in near >future >I am pleased to be among you and look forward to a long association >with you all. >Regarda >Duncan > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Thank you Elaine I will order the book. Regards DUNCAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2001 Report Share Posted October 14, 2001 Will do Regards DUNCAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2001 Report Share Posted October 14, 2001 Dear Duncan, When you get the book ,remember to read the notes on Auto-immune disease, as this alters the diet significantly Elaine (Mrs.) >From: KEYSDT@... >Reply-To: mscured >To: mscured >Subject: Re: New Member >Date: Sun, 14 Oct 2001 03:43:57 EDT > >Thank you Elaine I will order the book. >Regards > >DUNCAN _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Duncan, Hi Duncan! I'm new here too. Have not been diagnosed yet. Wanted to mention in addition to Elaine's suggestion about the " Eat Right for Your Type Diet " you may want to look into the " Best Bet Diet " also. The following links explain it: http://www.direct-ms.org/ (Read MacDougall's story) http://www.awsc07100.pwp.blueyonder.co.uk/ContentsPage.htm (homepage) (Homepage of the Best Bet Diet Group which bases their diet on the Direct-Ms information. There are alot of UKer's there.) http://www.topica.com/lists/ms-diet/read (email forum for Best Bet Diet Group) http://ourworld-top.cs.com/cah819/index.htm http://home.san.rr.com/iamshouse/ (a couple of good recipe places) http://www.msrc.co.uk/frameset.htm (Multiple Sclerosis Resource Center UK--their " New Pathways " magazine has all kinds of info on alternative treatments) http://www.livingwithms.co.uk/ms/index.html http://users.erols.com/mslnda/myms/msandme.htm (a couple of personal experience links) http://www.PaleoDiet.com/ms/ (has some good links) http://Swankmsdiet.com/ (Swank Diet Homepage) http://members.aol.com/MSInfoCent/index.htm http://infoonms.bizland.com/ (a couple of people following the Swank diet) http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=to pics & forum=Multiple+Sclerosis+2 & number=215 & DaysPrune=365 & LastLogin= (This is more of a medical forum. There are several UKer's here also. Most of the people on this forum are taking medication to help with their symptoms. It's kind of interesting in that it helps you compare symptoms.) This is probably an information overload but wanted to pass it along. JG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 > Duncan, > > Hi Duncan! I'm new here too. Have not been diagnosed yet. Wanted to > mention in addition to Elaine's suggestion about the " Eat Right for > Your Type Diet " you may want to look into the " Best Bet Diet " also. > The following links explain it: > > http://www.direct-ms.org/ (Read MacDougall's story) > > http://www.awsc07100.pwp.blueyonder.co.uk/ContentsPage.htm (homepage) > (Homepage of the Best Bet Diet Group which bases their diet on the > Direct-Ms information. There are alot of UKer's there.) > http://www.topica.com/lists/ms-diet/read > (email forum for Best Bet Diet Group) > > http://ourworld-top.cs.com/cah819/index.htmThank you for all the info.Much appreciated Regards Duncan > http://home.san.rr.com/iamshouse/ > (a couple of good recipe places) > > http://www.msrc.co.uk/frameset.htm > (Multiple Sclerosis Resource Center UK--their " New Pathways " magazine > has all kinds of info on alternative treatments) > > http://www.livingwithms.co.uk/ms/index.html > http://users.erols.com/mslnda/myms/msandme.htm > (a couple of personal experience links) > > http://www.PaleoDiet.com/ms/ (has some good links) > > http://Swankmsdiet.com/ (Swank Diet Homepage) > > http://members.aol.com/MSInfoCent/index.htm > http://infoonms.bizland.com/ > (a couple of people following the Swank diet) > > http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi? action=to > pics & forum=Multiple+Sclerosis+2 & number=215 & DaysPrune=365 & LastLogin= > (This is more of a medical forum. There are several UKer's here also. > Most of the people on this forum are taking medication to help with > their symptoms. It's kind of interesting in that it helps you compare > symptoms.) > > This is probably an information overload but wanted to pass it along. > JG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 Dear Duncan; Be cautious with this diet. Eat right is based on a flawed premise. Not everybody thinks its so great. There are a lot of doctors in my area who are treating patients who have been eatins tons of protein, and have created lots of health problems form it. Type O blood are supposedly meat eaters. Did you know cows have over twenty different types of blood type? As far as I know, they all eat grass! Regards; > >Reply-To: mscured >To: mscured >Subject: Re: New Member >Date: Sun, 14 Oct 2001 17:53:45 +0000 > >Dear Duncan, > When you get the book ,remember to read the notes on Auto-immune >disease, as this alters the diet significantly > Elaine (Mrs.) > > > >From: KEYSDT@... > >Reply-To: mscured > >To: mscured > >Subject: Re: New Member > >Date: Sun, 14 Oct 2001 03:43:57 EDT > > > >Thank you Elaine I will order the book. > >Regards > > > >DUNCAN > > >_________________________________________________________________ >Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 Hi, I dont agree with your doc on urine issue. As you well find in this group, it is one of the affects of miralax. At least for our son!! If you are concerned about this, you should still take her to urologist!! Make sure nothing is wrong. When did you start to notice her personality change? Soon after she started miralax? If she has been a miralax for 2 years and you are just starting to notice extra urine, you should probably have it checked. We noticed the extra urine immediately!! Also, I realize there is a diagnosed condition that you mentioned where they hold there stool. Im sure a lot of kids do this, but as far as our son, we are pretty sure his was weak muscles. Surely they would still hold on miralax. Our genetics told us that everything works very slow with our son, including gi tract!!! Have you tried other things for constipation, like prunes, etc? Jennie wrote: Hello! My daughter is 5 years old and has been on Miralax since she was 3. First the gastro diagnosed her with functional constipation then after a year of Miralax every day she started to have us ween her off of it. Almost another year went by and we were still having a hard time with her pushing out her stools. She would hold it in for up to 2 weeks sometime then it was horrible to see her push out these huge stools. Needless to say we brought her back to the gastro her now has her diagnosed with encopresis and is back on Miralax. She has been going a couple times a day for the past 3 months. I started getting concerned with the medicine a month ago when I started noticing how she urinates alot and always feels like she has to go, almost like she has a weak bladder. I took her to the pediatrician to see if it was a urinary tract infection and it was negative and the gastro said that frequent urination is not a side effect of the Miralax. So I actually made an appt. with a urologist which was today but I cancelled because I found this group and thought I could get some opinions before I put my daughter through more doctor visits. On top of the urination issue I have noticed a change in my daughter's personality and have brought her to shrinks and she started to stutter which I have her going to speech therapy for. I thoguht that her issues were my fault because I was very frustrated when she wasn't pushing out her poopy and I did get mad at times with her or I thought her personality was affected by just going through the trauma of pushing out the large stools. I am really lost, sad and confused with all of this. If anyone can offer me any suggestions I would appreciate it. The gastro does not want me to start weening her off of the Miralax til January because she is starting Kindergarten in September. Please, any suggestions would be greatly appreciated! Thank you.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 Hi. Sorry to hear you've been having so much difficulty. My son (turning 5 yrs next month) was on Miralax for just about a week - yes, only a week - and that was a year ago now. He's always had constipation issues (his GI chalked it up to " motility issues " ), and as an infant he would sometimes go as long a 8 days without a poopie diaper. Last summer (after I stopped the Miralax) Sammy had some major urinary issues. Because he felt pain, we all thought it was a UTI that was being disguised as he was on antibiotics for an ear infection at the time. For four nights in a row he suddenly went from an almost dry pullup to three saturated pullups and leakage through the sheets and two towels placed under him. It was terrible! His urine cultures were all negative, but his ped was concerned though not terribly so. Not until I brought my son in for another culture, and he passed what looked like a " mucus plug " . Straight in for 3D sonos of his kidneys. He had stage 1 hydronephrosis (urine retention in the kidneys). That afternoon we saw the ped urologist up at Westchester Med Center. He said that it was possible that the condition was caused by urine reflux through the ureters and scheduled a VCUG w/contrast. The VCUG showed now structural abnormalities. So, in essence, my son was not retaining urine, but producing an abundance of urine. In addition, they said there was a " sludge " on the bottom of his bladder. To this day, I've never gotten a coherent explanation of that. They also checked him for Cystic Fibrosis as I'm a carrier, and GI and urinary issues abound in CF kids - the tests were negative. The condition seemed to pass on its own. He was doing really well with the urine issues until the summer came. He's only gone through a pullup once, but now I notice that his pullups are full more often, almost daily. I took him to the ped this past Saturday for a tushy rash and diarreah (sad to say the poops actually made me happy). He had been on Augmentin for an infected lip (boys will be boys and he split his lip two weeks ago- took 4 days to develop signs of infection) so it's possible that he had a UTI that was masked. The timing may be coincidental, but I'm keeping a close watch. All I know is that the urinary/kidney issues didn't happen until Miralax was introduced. Please keep us posted on your progress. , Mommy of Sammy 5yo boy - no diagnosed spectrum issues Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2005 Report Share Posted July 19, 2005 Since My daughter has been back on the Miralax this time (roughly 4 months) for the Encopresis I have kept her on the special diet that we were trying for the almost year that she was off of Miralax the first time to keep her stools soft, which did not work. And I have a whole program I have been doing with her to reward her for going poopie that her psychiatrist has planned. And the whole thing is that I really don't think she is mentally holding her poopie in, I really think her body is so reliant on this Miralax to pass a stool. Not even 48 hours after being put on this Miralax 4 months ago again she was fine with going potty, no stains or anything. Just the other stuff started happening like the studdering and frequent urination. It is really odd how so many of us mothers are out there dealing with the same problem? I must admit I am really nervous about exactly how to go about getting her " normal " . I will reschedule my appt. for the urologist, keep bringing her to the speech therapist and I am not sure if I should go back to my gastro with this issue, because is she really going to admit that the medicine she prescribed could be the culprit? Maybe I should talk to her pediatrician or go to a different gastro or is there any other type of doctor that you would suggest that could help me ween her off of the Miralax without the risk of more side effects? I really appreciate everyone's advice. I am very sad that other children and families are going through this as well. I know that I have been getting very depressed because I thought the studdering and her personality change was all my fault. When we went through that year of no Miralax and she was going up to 2 weeks w/o passing a stool I would get frustrated at times and I thought my reaction traumatized her. Not saying that it didn't have some effect on her but perhaps it is not all my fault and the medicine did have some effect on her. I am expecting my 3rd child in 2 weeks and I cannot even tell you how much I have spent on parenting stuff. Everyone around me thinks I am silly telling me I am a great parent but seeing your child go through changes and not knowing exactly why you just seem to point the finger at yourself, plus I am hormonal!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 What a wonderful person you are! I wish we had a sitter for my father who wanted to learn more. I know you will find lots of information here that will help you care for the patient and be helpful to the family. Thank you for your caring! Tammy Castille wrote:I am looking forward to learning more about LBD and hopefully that will help me deal with the problems that arise. I am a sitter who doesn't have alot of medical experience. But I do know that I need help. Thanks for allowing me into this group. I am sure I will get the help I need and the support. Thanks again --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Friday was a very hard day for me. Ms M was in rare form. I guess I bettter give a little more background about her. She also has RA wich has made her almost bed ridden. She has had 3 strokes and has gone blind in one eye due to a severe eye infection. She has Sweets Syndrome, and has had a bilateral mystectomy for breast cancer. She also has COPD along with asthma. She is a very sick woman. She is only 58. When she is with it, she is wonderful person to be around, but lately she seems to be getting worse. She tells me that her husband broke her hand, left her in a warehouse down the road, and she and her husband got locked in an appliance store. I know she hasn't gone anywhere because I'm the one that bathes her and gets her dressed. She thinks she is not in her home, but that men have come and moverd her furniture to another house that looks like hers. She is also having conversations with her deceased mother and father. How do I handle her? Do I correct her? Sometimes when I do she gets mad and tells me I'm lying to her. Then in the next breath she tells me to tell her if she is crazy. What do I do? Any suggestions would be welcome. Tammy Close wrote: What a wonderful person you are! I wish we had a sitter for my father who wanted to learn more. I know you will find lots of information here that will help you care for the patient and be helpful to the family. Thank you for your caring! Tammy Castille wrote:I am looking forward to learning more about LBD and hopefully that will help me deal with the problems that arise. I am a sitter who doesn't have alot of medical experience. But I do know that I need help. Thanks for allowing me into this group. I am sure I will get the help I need and the support. Thanks again --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Welcome Myrna- Wanted you to know there is a caringspouses site as well. Click on: http://www.lewybodydementia.org/ index.html You will find links at the left, click on LBD email groups. It will bring up both groups: lbdcaregivers and lbdcaringspouses. You may want to join both groups. There are different perspectives in caregiving, from a child and from a spouse. Do stay with us here as you will find the hearts here are bigger than LBD itself. Remember to take care of yourself as the caregiver. We can't effectively give care unless we care for ourselves as well. Hugs from Iowa- Sandie and -- New Member I am a new member. My husband is 70 and has Alzheimer's or LBD...who knows which???? I probably just want to listen and read for a little while. Thanks. Myrna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Welcome Myrna, If you go to the LBD page to get to caring spouses group, do stop and read lots of the links and things. You can also go back and read old messages if you go to the Yahoo site. Sorry you have to be here. You can request a brochure and also read the news letter (1-3) and get some good insight. I do believe if you find an appropiate Nero, you should be able to get a proper diagnosis. The brochure will help you decide also and help you to determine what is going on. As you will read from the experience of many here, been there, done that. It will help you anticipate what is coming and what you might be able to avoid. Keep reading and let us know you are there and what is happening. Someone else has always been where you are. Let people know where you are located so you might find others who are in your area and can be a real support. We are having our first caregivers meeting in Florida in Sepember and I am sure Carol will be updating everyone soon again. We are hoping to have more support groups going in the near future. Donna R New Member Quote Link to comment Share on other sites More sharing options...
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