Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Hi : I was diagnosed when I was 22, a long while ago. I am now 39. When I was diagnosed, I had kidney involvement and that has remained the same throughout all these years. But I was lucky - for many years Lupus was not acting up too much and after the initial 5 years of heavy prednisone and imuran therapy, I was off medication and have gone through a nice long period of remission and three healthy pregnancies, resulting in me being a mother of three wonderful boys: Sebastian (almost 9), Kasper (6) and Arek (3 in a week). Last years my kidneys started to deteriorate substantially and by fall I was on chemotherapy with significant kidney lose. I am grateful for all the years I was pretty much able to lead a normal life with minor limitations. I am still grateful that chemotherapy is helping and my kidneys are a lot better now in comparison to last year. I do what I feel I can handle and when I can handle it, and I let it go when I have a bad moment, day or week. I know there will be better days and I look forward to them. Yes, it is sometimes difficult, especially if you want to keep up with your kids and be a mother in every sense. I am happy to have the support of my husband and other members of my family. I try not to worry what the next day will bring, I take every day as it is and hope it won't get worse tomorrow. It is very difficult to foresee what kind of treatment you can expect. Each case is different - I have been on high dosages of Prednisone, chemotherapy (Cytoxan on a monthly basis between November and April and now every 3 months), high dosages of diuretics, Plaquenil, high blood pressure medication, and some other fun stuff. That's mainly because of my kidney damage, which is a pretty strong reason. My joints are not too bad, but I get spasticity - my muscles cramp up on me and twist my hands, feet and neck to a point where they get all crooked and I can't straighten them out. That is probably due to the brain spots I have had for a while now. The only advice I can give you is to find a good doctor you feel you can trust, and if you do, follow his directions. Try and lead as normal life as possible and rest, rest, rest whenever possible. Make sure that your night starts rather early and if you can get away with a nap during the day, that is the best way to regenerate yourself. Eat and drink healthy and know when to give up. Let others do housework for you if that is possible, if not, don't beat yourself over a messy house or uncooked dinner. Just make sure your freezer is packed with hot dogs and other stuff you can serve without much effort. Get paper plates, if washing, or putting away dishes is too much for you. Good luck and keep in touch. Mojo New Member > Hello everyone > My name is and I am 22 about to be 23 next month. I am a stay- > at-home mother of 2 little girls Avery,3 and Sloan 20 months. I > joined this group to be able to speak to someone about what I am > feeling at midnight if need be. My stepmother was diagnosed with > Lupus about 8 years ago and I can talk to her during the day but I am > sure she would appreciate her rest during the night when I need to > vent. My symptoms started out with a horrible pain at one point in > my head, they thought that it may have been a tumor at first and did > all the test to rule it out. Well that came back negative and then > they went to MS because my hands fell asleep and my whole left side > would go numb and then my right eye would go blind for minutes at a > time. I had terrible dizziness and still do. Well the neurologist > ruled out MS but in the process did blood work and found that my > blood was clotting and sent me to a Hematologist. I have been going > to my appointments with him for the last 6 months and after being > poked and proded like a cow, he now wants me to see the > Rheumatologist. Reason being is that my legs and hip have been > killing me. I have good circulation he says but to me it feels like > someone is stabbing me in the legs and hips. It hurts so bad at > times I feel like I am going to throw my guts up. GROSS!!!!! So he > says that for now he thinks it is Lupus and wants to involve the > Rheumatologist to start treatment. I am very scared because I have > heard the outcome of the disease is not so good at times. Depending > on the severity. My aunt has fibromalaysia, which I just found out > and sometimes when I bend over to pick up some toys or stand up from > my chair in the living room or get upset over something I can hardly > breath, I feel like I just ran 2 blocks. Has anyone else here > experienced any of this? What can you guys tell me to expect as far > as medications for treatment. I am a mom and my girls need me so I > will do anything. They of course don't understand why mommy can run > around or sometimes the can't sit on my lap because my hips feel like > they will burst if they do. Thanks for the feedback and support. > Please don't hesitate to write to me with your venting. > > > > > > " The LUPIES Store " Come check out our store... > http://www.cafepress.com/thelupies > > " The LUPIES Web Page " > http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " > Check out what your fellow Lupies look like... > http://www.picturetrail.com/gallery/view?username=lupies > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2007 Report Share Posted April 24, 2007 Joan, Welcome to the group! It sounds like you've definitely been through hell, and I'm sorry to hear that. Credibility is one of the factors all of us with FM and/or CFS/ME have to deal with. The medical community doesn't help when they question the authenticity of this illness. Then the lack of funding for research only signals it's lack of caring for " us " . It's so beneficial to have places like this forum to turn to for moral support. In a world where no one seems to care, this is like an oasis tucked away into the background. We've all " been there " , but at least you're not " there " alone. I have a website that is devoted to finding a cure...through our FM/CFS/ME Survey, http://fmcfsme.d-3systems.com/survey.php as well as providing information and resources for people with FM and/ CFS/ME. It's FREE and there are NO annoying pop-ups to deal with. We offer such things as: * Help finding a doctor http://fmcfsme.d-3systems.com/find.php * Symptoms, treatments, duration, severity and general info for FM and CFS/ME * In depth information (including side effects and drug interactions) for drugs used in the treatment of FM, CFS/ME http://fmcfsme.d-3systems.com/drugs.php * FAQ's about FM, CFS/ME and Disability http://fmcfsme.d-3systems.com/faqs.php * Medical abbreviations http://fmcfsme.d-3systems.com/abb.php and definitions http://fmcfsme.d-3systems.com/definitions.php * Coping Tips http://fmcfsme.d-3systems.com/coping.php * Support Resources, including online and offline support group listings worldwide http://fmcfsme.d-3systems.com/support.php * Awareness information, and tips for making people more aware of our plight. http://fmcfsme.d-3systems.com/awareness.php Please let me know if there is anything I can do to help make your life a little better. Best Wishes, Misty Patient & Owner FM/CFS/ME Resources http://fmcfsme.d-3systems.com/ --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 Belated Welcome ! Happy to meet you! Never had shingles problems yet. Do have plenty other ones. Debbie J > > Hi > My name is , I am 45 with 4 kids, and I was given the FMS > diagnosis in 1998 - I went through the anti-depresent and after > no improvement I gave up and started figuring out for myself what > worked for me. I developed hip bursitis last year and saw a > specialist for that and he confirmed the FMS and felt there was no > help that he could give - such is the state of medicine in rural > Ontario Canada. > > I am interested to know if anyone has experienced ongoing Shingles > with their FMS - I break out in a rash 2 or 3 times a year. > > Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 Welcome Earline! Happy to meet you, too. There is much good information found here. I try to provide helpful sites when I am able. Debbie J > > Hello, my name is Earline and I was diagnosed with Fibromyalgia about > 5+ years ago. I have had problems off and on over the years but the > pain and other problems have been more or less controlled at least so > I can work and take care of my family. > > Recently, I have been under tremendous stress which is another story, > but it has caused my Fibromyalgia to really act up. I am so tired all > the time now and have great difficulty sleeping. I am also having a > lot of symptoms that I have never had problems with like falling a > lot, balance problems, headaches etc. My doctor just had an MRI done > to rule out a brain tumor, but thank goodness it was normal. I have > an appointment with a rheumatologist towards the end of next month > and I hope to get some help, but in the mean time I have to cope with > especially the fatigue and work at the same time. > > I am a 59 yo single mom to 3, two of which are still at home. I also > have my 17 month old granddaughter living with me. I work a full time > job with Pathways a mental/behavioral health clinic as a casemanager > working with children. > > I hope to get a lot of good information and support from this group > and share anything that I can with others. > > Earlin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Hi Donna, When you say your husband's diagnosis for MS was confirmed ...how so? Brain MRI? spinal tap? I had both done in 2006 and was told I have MS. Nueros will bring up the CRAB drugs ...which do not do anything. Your best option would be to find a very good alternative medicine doctor in your area. I was recently diagnosed with Lyme disease which can present a MS symptom pattern. Has your husband been tested for Lyme? It might be helpful to have your husbands doctor run a Lyme test from a reputable lab such as Igenex. I see where you live in Virginia and there is a lot of incidence of Lyme there. Also, heavy metal issues, dental issues can contribute to MS presenting illnesses. There are many members of this group that are very smart and knowledgeable that can help you and your husband. I would recommend staying away from Western medicine as from my experience they having nothing to offer. Alternative medicine provides treatment options and many people have recovered with treatment for Lyme, heavy metals, etc. Best, I'll Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 , He was diagnosed with 5 mri's, a spinal tap, a bone marrow test and a biopsy. They thought it was cancer for almost a month and a half. The dr's did not treat either. We just had another MRI done and they found a second sclerosis. He was tested for every baterial, infectous, viral and everything else they could come up with. He spent 2 months in the hospital. He had about 10 doctors working on him and even had the pathologiest at Hopkins. I am 100% he has not been bit by a tick. While we are currently in VA we actually live in SC. We are working here and have an apartment here. Thanks for all the info. Donna in VA Subject: Re: New member To: " mscured " <mscured > Date: Monday, July 11, 2011, 5:16 PM  Hi Donna, When you say your husband's diagnosis for MS was confirmed ...how so? Brain MRI? spinal tap? I had both done in 2006 and was told I have MS. Nueros will bring up the CRAB drugs ...which do not do anything. Your best option would be to find a very good alternative medicine doctor in your area. I was recently diagnosed with Lyme disease which can present a MS symptom pattern. Has your husband been tested for Lyme? It might be helpful to have your husbands doctor run a Lyme test from a reputable lab such as Igenex. I see where you live in Virginia and there is a lot of incidence of Lyme there. Also, heavy metal issues, dental issues can contribute to MS presenting illnesses. There are many members of this group that are very smart and knowledgeable that can help you and your husband. I would recommend staying away from Western medicine as from my experience they having nothing to offer. Alternative medicine provides treatment options and many people have recovered with treatment for Lyme, heavy metals, etc. Best, I'll Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Hi Donna,  I have had 2 brain MRIS and a spinal tap also and spent two weeks in the hospital. I was very very ill when I first was hit with the disease-- having great difficulties walking,, short of breath. very weak and fatigued and my heart rhythm was going crazy. Unless he has been tested by Igenex or another comparable high end lab there is not way to tell if he was infected with Lyme-- it doesnt have to be a tick and most do not even realize they have come in contact with the disease. My nueros were some of the best in the country-- one at Cedar Sinai in Los Angeles and even they thought I have so called " MS. "    I have four lesions on my brain MRI and 4 on my spine. Lyme is prevealent all over the country. I came in contact with the disease in California. If you do a Google search you will see how many times Lyme disease and other probelms with heavy metals, dental issues , etc are misdiagnosed as " MS " .   Best,  Subject: Re: New member To: " mscured " <mscured > Date: Monday, July 11, 2011, 5:16 PM  Hi Donna, When you say your husband's diagnosis for MS was confirmed ...how so? Brain MRI? spinal tap? I had both done in 2006 and was told I have MS. Nueros will bring up the CRAB drugs ...which do not do anything. Your best option would be to find a very good alternative medicine doctor in your area. I was recently diagnosed with Lyme disease which can present a MS symptom pattern. Has your husband been tested for Lyme? It might be helpful to have your husbands doctor run a Lyme test from a reputable lab such as Igenex. I see where you live in Virginia and there is a lot of incidence of Lyme there. Also, heavy metal issues, dental issues can contribute to MS presenting illnesses. There are many members of this group that are very smart and knowledgeable that can help you and your husband. I would recommend staying away from Western medicine as from my experience they having nothing to offer. Alternative medicine provides treatment options and many people have recovered with treatment for Lyme, heavy metals, etc. Best, I'll Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 I can personally attest to and agree with the statements made by Mike. I probably got LD about 1995, and didn't know what LD was until my +IgeneX test result in Jan 2010. Left untreated for so many years, LD really got a foothold on me, and now it's taking everything to reverse its course. BTW, I went down the MS+neuro path too, and profoundly regret it (I didn't know at the time). An MS neuro isn't going to help you restore your health, but will offer expensive ways to apply ineffective " band-aids. " Randy You said: <snip> I personally think that PPMS or SPMS is very easily a lasting or Chronic Lyme infection. You need to be sure and treat the right thing. With the exception of having Lyme Disease these remarks are all my opinion. Best Wishes, Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Hello and Welcome, Since being diagnosed in 2004, I have come to regard MS as a descriptive diagnosis (the name MS describing a collection of symptoms generally associated with one another). A single, definitive underlying cause of everyone's MS symptoms has yet to be identified. For me, the underlying cause is Lyme disease, which is a bacterial infection. My Lyme-literate MD calls my condition " Lyme-induced MS. " Heavy metal toxicity (Mercury poisoning) can also create MS or MS-like symptoms. Similarly, sensitivity to ingested artificial sweeteners (such as Aspartame) can trigger MS or MS-like symptoms. In my experience, a neurologist draws a conclusion, labels the patient's symptoms as MS, prescribes expensive disease-modifying pharmaceuticals, then waits for the patient's health to disintegrate. My suggestion is to keep searching. Keep digging. Keep asking questions. Keep looking for alternatives to the recommendations given by conventionally-trained neurologists. KC > > I can personally attest to and agree with the statements made by Mike. > I probably got LD about 1995, and didn't know what LD was until my > +IgeneX test result in Jan 2010. > Left untreated for so many years, LD really got a foothold on me, and > now it's taking everything to reverse its course. > BTW, I went down the MS+neuro path too, and profoundly regret it (I > didn't know at the time). > An MS neuro isn't going to help you restore your health, > but will offer expensive ways to apply ineffective " band-aids. " > Randy > > You said: > <snip> > I personally think that PPMS or SPMS is very easily a lasting or Chronic > Lyme infection. You need to be sure and treat the right thing. With > the exception of having Lyme Disease these remarks are all my opinion. > Best Wishes, > Mike > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2011 Report Share Posted November 17, 2011 Just to echo ...you and your husband need a retest immediately. To save time you both ought to consider using IgeneX labs. There are others but that's the lab Dr. Burrascano suggests to use. Think about it like this, your MS dgxs is in question until your properly tested for Lyme. I like have suffered possible irrepairable nuerological damage from untreated Lyme Disease. They'll put a stamp on you having MS based on markers that studies have shown to be mimicked by Lyme (CSF banding, white matter on brain/spine,etc). If it's Lyme and you get it early enough it can be cured. If you have Lyme and continue to treat MS, your condition WILL get worse. Anyone with MS needs to be properly tested to rule out Lyme Disease by a QUALIFIED lab. -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2012 Report Share Posted March 26, 2012 Hello Kim, Dizziness, tingling in my legs and hands, very tired and run down, headaches…those are some of the symptoms I have had. In 2004, based on the results from several MRIs and the results from an evoked potentials test, two prominent neurologists labeled my condition Multiple Sclerosis. Since then I have come to regard MS as a descriptive diagnosis (because " MS " describes a collection of symptoms commonly associated with one another with no single, identifiable cause for the development of MS or MS-like symptoms that applies in every case. It took several years and many more doctors (MDs and alternative doctors) to find the root cause of my symptoms: Lyme disease. My Lyme specialist calls my condition " Lyme-induced Multiple Sclerosis " . Consider the possibility of Lyme disease. Consider the possibility of mercury poisoning. Consider the possibility of poisoning from artificial sweeteners. Lyme (and/or its associated co-infections), mercury poisoning, and poisoning from artificial sweeteners can cause many of the same symptoms you describe. KC (BTW: Thrush is yeast overgrowth. It shows up in the mouth but it starts in the intestines. Cold sores are from a virus. Viruses are opportunistic and will resurface when the immune system is under stress.) > > ---------- Forwarded message ---------- > > Date: Sun, Mar 25, 2012 at 11:16 PM > Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! > To: mscured Moderator <mscured-owner > > > > My daughter is a 26yr old Social Worker in Cleveland Oh. Last fall she > started complaining about dizziness and then got tingeling in her hands and > was very tired and run down. Went to family Dr when she also started having > headaches. She sent her to get MRI and it came back with a few white spots. > We then went to neurologist who wasnt impressed with the MRI. (I am still > not sure what that meant)we went back in 3 months got another MRI. She > still has all the symptoms, he says he is " Concerned " about the white spots > , but come back in 6 months and he wont commit to a diagnosis > We are curious about several things and the connection, or not? Before all > these symptoms showed up she had several out breaks of cold sores, and we > have heard about maybe a connection, she was also very sick before all this > with a strep and run down. As a baby she had thrush, I have read of some > connection with MS?Then I have read maybe some connection with Chocolate, > guess what she loves? The other day was kind of a good day and we went to > lunch had choc cake and half hr later she had weakness , numbing hands and > increased headache. > we are now going for a second opinion, but i fear the worst. She is very > interested in NOT taking medicine so we are exploring all options, vit D > magnesium, raw food, CoQ10 and anything > thanks for listening > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2012 Report Share Posted March 26, 2012 Hi. I'd like to chime in here because I am not a new member but right now I feel like one. I have tried so many things. For a while I felt like I was staying stable --for about 3 or 4 years -- but now the last year I definitely feel a decline in a number of areas. I am not interested in CCSVI for myself personally but I am really interested in trying to figure out what are the most important supplements. How does one know which supplements they need. I do take Vitamin D3 and my Vitamin D tests come back pretty good at about 60 where the normal range is 30-100. I have been interested in possibly meeting with a chelation specialist and getting tested for mercury poisoning because I was overvaccinated in the past. However, I read so many scary stories about herx reactions from chelation that it does scare me and a few times I took a small dose of oral DMSA and I felt much more cognitively confused for the next few days each time. Regarding the ELISA, I have now had it done five times over the past 6 years. Last year, just to see what would happen, I had the blood drawn at the same time and sent to two different labs--one blood speciment to Cambridge and the other specimen to York. Well sorry to have to say this but even though it was the same blood draw the ELISA results from each lab was extremely different, with only a little bit of overlap. To me that pretty much washed away the validity of the ELISA testing, because, again, this was taken from the same blood draw at the same exact time (no eating in between, etc) and sent to two reputable labs with extremely different results. I gave up on ELISA testing after that. However, I do notice I feel much better when avoiding gluten, dairy, and eggs. Lately I am having a lot of trouble falling alseep at night. I am very wired at night. I was diagnosed with hypothyroidism 3 years ago and I take Naturethroid and my thyroid numbers always come back normal now, but I don't feel normal. My brain fog and fatigue are the biggest problems, followed by paresthesias of the limbs and also my vision has been deteriorating. I am scared. I feel like I don't know what road to take. I made an appointment with an extremely expnsive holistic MD but then I heard he was not too good, so I canceled. I just feel right now like I don't have a plan, and I really need a plan--a plan at least gives me hope. Thank you if anyone can comment on what I should do. I fear that it is like the traditional view of MS that tries to tell us we will go downhill in most cases and I used to not believe that, but now I feel, at least for me, it is happening like that. Thank you for any suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2012 Report Share Posted March 26, 2012 Kc, thanks for the ideas, we will check them out. I guess it still scares me because of the spots on the MRI. I asked the neuro. if we should be worried and he said no, but " concerned " And I am ________________________________ To: mscured Sent: Monday, March 26, 2012 12:12 PM Subject: Re: new member  Hello Kim, Dizziness, tingling in my legs and hands, very tired and run down, headaches…those are some of the symptoms I have had. In 2004, based on the results from several MRIs and the results from an evoked potentials test, two prominent neurologists labeled my condition Multiple Sclerosis. Since then I have come to regard MS as a descriptive diagnosis (because " MS " describes a collection of symptoms commonly associated with one another with no single, identifiable cause for the development of MS or MS-like symptoms that applies in every case. It took several years and many more doctors (MDs and alternative doctors) to find the root cause of my symptoms: Lyme disease. My Lyme specialist calls my condition " Lyme-induced Multiple Sclerosis " . Consider the possibility of Lyme disease. Consider the possibility of mercury poisoning. Consider the possibility of poisoning from artificial sweeteners. Lyme (and/or its associated co-infections), mercury poisoning, and poisoning from artificial sweeteners can cause many of the same symptoms you describe. KC (BTW: Thrush is yeast overgrowth. It shows up in the mouth but it starts in the intestines. Cold sores are from a virus. Viruses are opportunistic and will resurface when the immune system is under stress.) > > ---------- Forwarded message ---------- > > Date: Sun, Mar 25, 2012 at 11:16 PM > Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! > To: mscured Moderator <mscured-owner > > > > My daughter is a 26yr old Social Worker in Cleveland Oh. Last fall she > started complaining about dizziness and then got tingeling in her hands and > was very tired and run down. Went to family Dr when she also started having > headaches. She sent her to get MRI and it came back with a few white spots. > We then went to neurologist who wasnt impressed with the MRI. (I am still > not sure what that meant)we went back in 3 months got another MRI. She > still has all the symptoms, he says he is " Concerned " about the white spots > , but come back in 6 months and he wont commit to a diagnosis > We are curious about several things and the connection, or not? Before all > these symptoms showed up she had several out breaks of cold sores, and we > have heard about maybe a connection, she was also very sick before all this > with a strep and run down. As a baby she had thrush, I have read of some > connection with MS?Then I have read maybe some connection with Chocolate, > guess what she loves? The other day was kind of a good day and we went to > lunch had choc cake and half hr later she had weakness , numbing hands and > increased headache. > we are now going for a second opinion, but i fear the worst. She is very > interested in NOT taking medicine so we are exploring all options, vit D > magnesium, raw food, CoQ10 and anything > thanks for listening > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 Hi Zoe, sorry you are not well. Have you ever tried LDN? > > Hi. I'd like to chime in here because I am not a new member but right now I feel like one. I have tried so many things. For a while I felt like I was staying stable --for about 3 or 4 years -- but now the last year I definitely feel a decline in a number of areas. I am not interested in CCSVI for myself personally but I am really interested in trying to figure out what are the most important supplements. How does one know which supplements they need. I do take Vitamin D3 and my Vitamin D tests come back pretty good at about 60 where the normal range is 30-100. I have been interested in possibly meeting with a chelation specialist and getting tested for mercury poisoning because I was overvaccinated in the past. However, I read so many scary stories about herx reactions from chelation that it does scare me and a few times I took a small dose of oral DMSA and I felt much more cognitively confused for the next few days each time. Regarding the ELISA, I have > now had it done five times over the past 6 years. Last year, just to see what would happen, I had the blood drawn at the same time and sent to two different labs--one blood speciment to Cambridge and the other specimen to York. Well sorry to have to say this but even though it was the same blood draw the ELISA results from each lab was extremely different, with only a little bit of overlap. To me that pretty much washed away the validity of the ELISA testing, because, again, this was taken from the same blood draw at the same exact time (no eating in between, etc) and sent to two reputable labs with extremely different results. I gave up on ELISA testing after that. However, I do notice I feel much better when avoiding gluten, dairy, and eggs. Lately I am having a lot of trouble falling alseep at night. I am very wired at night. I was diagnosed with hypothyroidism 3 years ago and I take Naturethroid and my thyroid numbers always come back normal now, > but I don't feel normal. My brain fog and fatigue are the biggest problems, followed by paresthesias of the limbs and also my vision has been deteriorating. I am scared. I feel like I don't know what road to take. I made an appointment with an extremely expnsive holistic MD but then I heard he was not too good, so I canceled. I just feel right now like I don't have a plan, and I really need a plan--a plan at least gives me hope. Thank you if anyone can comment on what I should do. I fear that it is like the traditional view of MS that tries to tell us we will go downhill in most cases and I used to not believe that, but now I feel, at least for me, it is happening like that. Thank you for any suggestions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2012 Report Share Posted June 11, 2012 Hello Jen, My LLMD calls my condition " Lyme-induced MS " or " Lyme with an MS presentation " . He is confident that by treating and subduing the Lyme bacteria and co-infections that my MS symptoms will resolve. And, yes, Lyme disease can cause MS-like " lesions " that show up on an MRI. The evoked potentials tests simply tell that there are nerve signal interruptions. They do not identify a cause. They do not mean that nerve damage has occurred. The activity may be consistent with MS, and it may also be consistent with neurologic Lyme disease. You said you have an LLMD, but it might be time to find another. A true LLMD would know that Lyme can be misdiagnosed as MS. KC in CA treating Lyme disease for 5+ years and counting > > Date: Sun, Jun 10, 2012 at 5:56 PM > Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! > To: mscured Moderator <mscured-owner > > > > Good Evening, > Thank you for your response. I am a 44 y/o female diagnosed with RRMS in > 2009 after a second episode of diplopia. After the standard tests, the docs > diagnosed me with a " mild form of MS " . Never feeling the diagnosis was > accurate, I began a quest for answers. I read up on alternative treatments, > and found a Neurologist who would prescribe me LDN. Unfortunately, he was a > 3 1/2 hour drive. > > I kept trying to find answers, and eventually stumbled upon a clinical > trial at NIH, looking at people with a questionable MS diagnosis. I applied > and was accepted, so I flew down to Bethesda in March, 2010. After three > follow up appointments, I was advised that I had a confirmed case of MS, > and that I should begin a CRAB ASAP. I came home defeated, and called to > begin Copaxone. Being needle phobic, this was not an easy choice, but the > other MS drugs all carried the side effect of depression, and with a strong > family history, I didn't need any help getting depressed! The injections > never went well, or got any easier. I only gave them three months, but my > body seemed to be rejecting them with itchy, bruised welts left at every > injection site. > > By my third month, my older sister had been experiencing neurological > issues and was seeking answers. An extensive search led her to a savvy > Infectious Disease doc who promptly diagnosed her with Lyme disease. It was > as if a light bulb went off! I had flu-like symptoms for a good part of > 2008, prior to my double vision. I started researching Lyme disease like it > was my job. I started seeing the same Infectious disease doc who started me > on antibiotics. I reacted within 24 hours. Within a few weeks, the numbness > that had been spreading to my hands and mid section disappeared. I thought > I had found my answer. > > I switched to an LLMD and continued treatment for my Lyme and my > co-infections, and learned about CpN and HHV6 for the first time. After a > little over a year of treatment, I decided to switch gears and go a > holistic route. I never liked the idea of pumping my body full of drugs, > even if they were designed to kill off infections. Besides, I had run the > full Lyme route, subjecting myself to 4 months of Bicillin injections. That > was in March, 2012. > > At the advice of the PA at my LLMD, I followed up with a neurologist. The > doctor ordered an MRI and a SSEP and VEP. Everything came back abnormal. > New lesions on my MRI, specifically on my cervix and thoracic spine. > Everything was amiss. An email from my Lyme doctor advising me to begin MS > treatment. Apparently, the activity is consistent with MS. I'm back to > square one. I have no desire to begin MS drugs. I still believe there is a > cause for this, and that my body didn't just decide to start randomly > attacking itself for no valid reason. It doesn't make sense to me... MS > doesn't make sense to me. I've accepted MS as my diagnosis, I have not > however accepted that this is my fate. I am a fighter at heart, and will > move heaven and earth to get to the bottom of this. I believe there's and > answer... I believe there's a cure. I just have to find it. > Best Regards, > Jen Fila > > > " Absence of proof is not proof of absence " > Dr. M. Kissane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2012 Report Share Posted June 21, 2012 Hi , I would be interested to learn more about " the science " you've found on the subject. Please tell. Cheers, Pinda > > Hello folks, > > I suffer from and am disabled by a mitochondrial disorder that shares many of the symptoms of MS. There is much research that links MS to mitochondrial dysfunction such as here: > > http://www.ncbi.nlm.nih.gov/pubmed/19607913 > > I have recently tried a very simple therapy that has made a huge difference in my life and, as the following study from Stanford suggests, could make as much of a difference in yours: > > http://www.ctsaip.org/create-pdf.cfm?id=5893 > > The therapy: > 5 mg of benadryl every 4 hours during the day. That's it, costs about $4.00 per month! > > I started this therapy due to revalations in a thread in a mito yahoo group I moderate and have since ferreted out the info on how and why this works and exactly what low doses of certain antihistimines are doing. A hint: it is similar to LDN in function, but considerably more wide spectrum > > IF anyone is interested I will post on what prompted me to try this (the revelations) and on all the science I've found on the subject (what, how, why). > > Folks this is being hidden, as it turns out this could be benificial in MANY diseases, AND it doesn't require a prescription, AND it's cheap. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 All very interesting stuff! Thank you for your lengthy and speedy response. I agree, it would be interesting to see if the ratio was more similar before the likes of the modern contraceptive methods. Thank you for lots of useful information. I am learning that there are lots of different things to try and that some people's 'healers' are different to others and it is probably going to be a game of trial and error. I have to say I am very glad to have found this forum. Thank you. e Sent from my BlackBerry® wireless device Re: new member Welcome! You will find a lot of good information here. And support. I find your comments on contraception to be of significance. They are synthetic and or horse estrogens which have a different 'messenger' than human estrogen. Our food supply is heavily contaminated with poisonous estrogen mimicing compounds.  I have been researching the role of estrogenic compounds in inflammation and general wellbeing. Could birth control play a role in the higher incidence of MS in women vs men??? This led me to study progesterone, and lo and behold it has been proven to aid in axonal remyelination in rats.      Diet is all important! Yes the Whals Diet is good and some members here tout the Best Bet, or BB Diet. Another enlightened member here suggested low dose benadryl.I am on a very strick diet, did a lot of food allergy testing, etc. Any form of corn is poison for me.An interesting note here is that virtually all corn is now gmo infected to some degree. Livestock fed gmo corn either die or become sterile. There are now many lawsuits over this in the U.S. high fructose corn syrup, glucose-frutose and natural sweetener are code names for this insidious poison. Sorry for digressing, I embarked on the elimination diet, slowly including things from Whal's and BB. IF I feel a tingle or a sensation of a reaction, I imeediately take 5mg of uncolored childrens benadryl. It works amazingly well for me! It seems to stop a relapse, or at least stop the severity. I use no drugs or anti-inflammatories at all. I think the benadryl works by stopping the allergic reaction, which leads to the inflammation. This is the only drug of any type other than natural progesterone cream I have used. A wonderful member of this group posted this idea a couple weeks ago. It works so well for me that I am feeling guilty for not doing a good job of reporting how, when and why I use it. I do not proclaim it to be a cure, but a valuable assist, as I learn how and what to eat on my healing learning jouney. Keep studying and learning, you are going to be ok. ph     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2012 Report Share Posted July 25, 2012 ---------- Forwarded message ---------- Date: Wed, Jul 25, 2012 at 12:50 PM Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured Moderator <mscured-owner > My name is Helen, I've battled m.s. for over 12 years. I'm now using the bioness to help me walk, it is used for drop foot. I have problems with pain, weakness and fatigue. I was told 12 yrs ago I would be in a wheelchair in 2 yrs, since I was diagnosed with progressive m.s. That's when I decided to go on a quest for wellness. It's been a long hard journey but know one day I will defeat this monster and hope I will be able to help others who fight this battle. Thank you ------------------------------ Quote Link to comment Share on other sites More sharing options...
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