Guest guest Posted April 5, 2001 Report Share Posted April 5, 2001 Good morning everyone! I hope this finds everyone in good spirits and not too much pain. I would like to take this time to thank each and every one of you who send replies and suggestions to my questions about bladder problems. I received so many replies and don't want to miss anyone. All of your help is much appreciated. I guess another trip to the doctor is called for. It will be interesting to get a non-believer to understand that this could be chiari related. This is always fun, as we all know! Will let you all know what happens. Thanks again for all the replies. Your Friend in Pain & Wishes, Teri ACM, FMS, CFS, IBS, etc.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2011 Report Share Posted December 18, 2011 You said the word " neurologist " which reminded me how when I was going through getting diagnosis myself many years ago, I put all my faith in the neurologist both before and after, never doubting his word. Now, many years later I have learnt that not all of them are to be trusted. Get a second opinion if need be. Don't just succumb to any Big Pharma drugs that you are told will do wonders. Practically everyone in this group will tell you how it is possible to fight this thing quite well with an alternative approach.Good luck!Janet To: mscured From: hly62@... Date: Sat, 17 Dec 2011 19:17:12 +0000 Subject: Thank you Thanks all for the welcome, some good things to check into and I appreciate the suggestions. Also yes, I will for sure wait to really get into things when we are for certain that Rod has MS, but listening to the nurologist and his symptoms we both are pretty sure it's MS we are dealing with... thanks again for your help Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2011 Report Share Posted December 19, 2011 Holly, Being " pretty sure " is a feeling that neuro's instill in their patients. I was " pretty sure " I had ms for 5yrs. If you talk to anyone who has dealt or is dealing with the life changing circumstances of ms and was " pretty sure " as you are they'd urge you to be absolutely positive. Especially those of us who've lost abilities and have since been diagnosed with something that mimiks ms (like lyme)and could've been knocked out early. I'm pretty sure most if not all would say they wished they could go back in time to be " absolutely sure " it wasn't something other than ms; I would. I'm not judging you guys. I just know and have lived the reality I'm suggesting. Don't settle for " pretty sure " . Happy Holidays. -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2011 Report Share Posted December 19, 2011 Hello Holly, 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 > > Thanks all for the welcome, some good things to check into and I appreciate the suggestions. Also yes, I will for sure wait to really get into things when we are for certain that Rod has MS, but listening to the nurologist and his symptoms we both are pretty sure it's MS we are dealing with... thanks again for your help > Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2011 Report Share Posted December 19, 2011 In hindsight, I'd argue that none of the experts should be trusted. I personally invested my " blind faith " in experts, and subsequently lost over 15 years and a very important personal relationship. The ultimate irony in my case is that I made every effort to get a proper and accurate diagnosis - I even physically went to the oracle (Mayo Clinic) because I was falsely convinced that surely Mayo would have the answer. THEY DIDN'T. They never even mentioned Lyme Disease, so by the time I knew what I should've been fighting, I missed the window of opportunity. > > Holly, > Being " pretty sure " is a feeling that neuro's instill in their patients. I was " pretty sure " I had ms for 5yrs. If you talk to anyone who has dealt or is dealing with the life changing circumstances of ms and was " pretty sure " as you are they'd urge you to be absolutely positive. Especially those of us who've lost abilities and have since been diagnosed with something that mimiks ms (like lyme)and could've been knocked out early. I'm pretty sure most if not all would say they wished they could go back in time to be " absolutely sure " it wasn't something other than ms; I would. > I'm not judging you guys. I just know and have lived the reality I'm suggesting. Don't settle for " pretty sure " . Happy Holidays. > -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2011 Report Share Posted December 19, 2011 KC, have you had any gains treating you Lyme disease? Jorj www.jbdigitalcinema.com Re: Thank you Hello Holly, 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 > > Thanks all for the welcome, some good things to check into and I appreciate the suggestions. Also yes, I will for sure wait to really get into things when we are for certain that Rod has MS, but listening to the nurologist and his symptoms we both are pretty sure it's MS we are dealing with... thanks again for your help > Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2011 Report Share Posted December 20, 2011 The last thing I wanna say is to look at this along these lines because the ultimate fate can be just as serious: Would you play russian roulette with a gun you we're pretty sure wasn't loaded? Would you drive a car with brakes you we're pretty sure worked? Would you eat food that you we're pretty sure wasn't poisoned? It's to important of a decision to just settle for being pretty sure. Anyone faced with a life-changing fate like an MS diagnosis needs to be absolutely certain they've explored all other possibilities. Happy Holidays -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2011 Report Share Posted December 20, 2011 Hi Jorj, Since beginning treatment for Lyme, the most significant improvement I have noticed is in cognitive function; my short-term memory has improved dramatically. Focus, concentration and abstract thinking have improved some, though I have not yet regained my pre-Lyme mental abilities (I am still unable to do simple subtraction in my head). KC > > > > Thanks all for the welcome, some good things to check into and I appreciate the suggestions. Also yes, I will for sure wait to really get into things when we are for certain that Rod has MS, but listening to the nurologist and his symptoms we both are pretty sure it's MS we are dealing with... thanks again for your help > > Holly > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2011 Report Share Posted December 20, 2011 Thanks, KC. Jorj www.jbdigitalcinema.com Re: Thank you Hi Jorj, Since beginning treatment for Lyme, the most significant improvement I have noticed is in cognitive function; my short-term memory has improved dramatically. Focus, concentration and abstract thinking have improved some, though I have not yet regained my pre-Lyme mental abilities (I am still unable to do simple subtraction in my head). KC > > > > Thanks all for the welcome, some good things to check into and I appreciate the suggestions. Also yes, I will for sure wait to really get into things when we are for certain that Rod has MS, but listening to the nurologist and his symptoms we both are pretty sure it's MS we are dealing with... thanks again for your help > > Holly > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2011 Report Share Posted December 21, 2011 KC, Been on IV abx since Sept. and only improv. I've noticed is a slight intermittent scence of clarity in cog and people tell me I sound like my old self and I look so healthy despite the scooter that's glued to my rear. Doin PT 2x a week were I walk with a cane and and a spotter. Nothing like what I was capable of 6 months ago so it's hard for me to say I've improved much. So so dizzy everyday. Happy Holidays, -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2011 Report Share Posted December 21, 2011 hi ive never heard of ms being related to lyme desease ________________________________ To: mscured Sent: Monday, December 19, 2011 8:46 PM Subject: Re: Re: Thank you  KC, have you had any gains treating you Lyme disease? Jorj www.jbdigitalcinema.com Re: Thank you Hello Holly, 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 > > Thanks all for the welcome, some good things to check into and I appreciate the suggestions. Also yes, I will for sure wait to really get into things when we are for certain that Rod has MS, but listening to the nurologist and his symptoms we both are pretty sure it's MS we are dealing with... thanks again for your help > Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2011 Report Share Posted December 21, 2011 Multiple sclerosis is Lyme disease: Anatomy of a cover-up http://www.owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover\ -up/ My history: 2000 optic neuritis 2004 MS Rebif Copaxne 2006 MS LDN then intravenous Calcium Ethyl amino Phosphate (EAP) 2008 Lyme Disease + several coinfections. Start oral antibiotics. Lose weight, go from using one cane to two canes 2010 Nweurborreliosis, more oral antibiotics 2011 IM claforan, show some improvement. Started IV antibiotics via a PICC line about two weeks ago. It REALLY REALLY looks like my MS is better described as Lyme Disease. > > Lyme disease is often misdiagnosed as so called " MS " , CFS, and Fibromyalgia as well as other diseases. I was misdiagnosed as having MS almost six years ago now by a top neurologist and the result has been a lot of damage to my central nervous system. KC has stated this in the group: MS is or a disease per se it is a series of symptoms that have appeared and there is an explanation as to why they are occurring, not that you have I curable MS. I would run to have a specialized Lyme bacteria lab test...not one a neuro would order for example from Quest Labs. Igenex is a reputable lab. There are people with Lyme who have been cured. > > > > > Quote Link to comment Share on other sites More sharing options...
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