doctors misdiagnose cousins als

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doctors misdiagnose cousins als

Postby eric on January 14th, 2004, 5:47 pm

hello everybody, I have made so many improvements in my bfs that I called my cousin to let her know . she lives in florida and her husband had als for many years. well I just called yesterday too see how he was doing after all these years. I was shocked to here that they had missdiagnosed his als, it was really lyme disease. his condition is stable and improving on antibiotics. but he was not listened to because his blood tests were negative! now he took another test "urine antigen test" it was postitive.
it is the only test that is reliable. blood test dont work because there are no bacteria in the blood or spinal fluid swimming around at that time.
they are attached to blood vessels!
now I have told as many people as I can about lyme disease and it is time that you listen to your body and find a cure.if you listened to your neuro he has not the foggiest idea what lyme is and its effects.people are ruining thier lives because they listen to doctors they are not gods. you have to listen to yourself and seak out the truth.the truth will set you free!!!!
now im not saying that everybody has lyme but for god sake keep looking for an answer and above al else dont give up.
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Postby Dale on January 15th, 2004, 10:32 am

Hi Eric - everytime I hear that line, "the truth will set you free!", I think of that famous Canadian, Jim Carrey in the movie Liar Liar (kinda ironic, eh?). That movie was so funny!

Thanks for the laugh!

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Postby uber on January 15th, 2004, 11:57 am

I dont know how something like this can happen, obviously the neuro involved was very incompetant. Even if a neuro can consider ALS based on an entire neurological picture i.e pattern of symptoms, then he should still rule out the other possibilities first. However what I find hard to believe is that ive never heard of a case of Lyme presenting in the same way a MND would. Lyme might possibly present a little like MG, but not ALS, and even in the very rare case that it would present like ALS, it would have to follow a very precise prognosis for the neuro to think ALS as a diagnosis. If this neuro is confusing Lyme Disease as ALS then he doesnt deserve to be in his line of work, and your cousins Husband should be contacting his Lawyer.

However I wouldnt look into this very rare case and compare it to your own, the term "lyme disease" is something that is mentioned far too often on the net, you have to remember Lyme Disease is very very rare, and its extremly unlikely you have it, hence the reasons why neurologists world wide aren't so readily giving tests. I think if you ask a lot of neuro's depending on your location in the world, you would be hard pressed to find a neuro that has seen/diagnosed many Lyme Disease patients.
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Postby Dale on January 15th, 2004, 12:09 pm

Uber..tell me you don't actually believe that post! He's just yanking your chain.

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Postby uber on January 15th, 2004, 5:41 pm

i have read it again, i fail to see the "joke" element :/
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Postby eric on January 15th, 2004, 6:52 pm

uber wrote:I dont know how something like this can happen, obviously the neuro involved was very incompetant. Even if a neuro can consider ALS based on an entire neurological picture i.e pattern of symptoms, then he should still rule out the other possibilities first. However what I find hard to believe is that ive never heard of a case of Lyme presenting in the same way a MND would. Lyme might possibly present a little like MG, but not ALS, and even in the very rare case that it would present like ALS, it would have to follow a very precise prognosis for the neuro to think ALS as a diagnosis. If this neuro is confusing Lyme Disease as ALS then he doesnt deserve to be in his line of work, and your cousins Husband should be contacting his Lawyer.

However I wouldnt look into this very rare case and compare it to your own, the term "lyme disease" is something that is mentioned far too often on the net, you have to remember Lyme Disease is very very rare, and its extremly unlikely you have it, hence the reasons why neurologists world wide aren't so readily giving tests. I think if you ask a lot of neuro's depending on your location in the world, you would be hard pressed to find a neuro that has seen/diagnosed many Lyme Disease patients.


this is no joke you have no idea what you are talking about and yes lyme disease can present as als. lyme disease is not rare period. you are mistaken. how would you like the neuro to diagnose lyme disease when they dont have the tools or accurate test to do so plus they know nothing about it. infectious disease doctors know to some extent but cant reliable pin point the dianoses because test are inconclusive.my neuro admitted to me they cant diagnose it and he is top in the country. now let me tell you something dont try to discredit what I say here on this forum because it is true. lyme is all around the world. insurance companies dont want you to know that or they will have to pay 30,000 dollars for six months of treatment on intravenous antibiotics.if you were smart you would look it all up and you would see that there is a correlation between als,ms,fasciculations,"muscle atrophy" and other symptoms.also how can you rule out something that you cannot test for would you like to explain that.also dont tell me how lyme would show because you are way in right field. you just dont know that is it. i do baecause I have it.
dont ever say that lyme is over reported on this forum because that is not the truth and you dont know the truth so shut your mouth and let people save there lives. if you dont believe then stick your head in the sand and let other people on this chat room get a chance to change there current condition and life!
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Postby uber on January 15th, 2004, 8:47 pm

edit: ready below
Last edited by uber on January 15th, 2004, 9:14 pm, edited 1 time in total.
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Postby eric on January 15th, 2004, 9:00 pm

uber wrote:sorry that you feel so strong on the subject eric, for a start may I say that I never thought your original post was a joke. Id still say you are wrong on the accounts that Lyme Disease does not present with the same early prognosis of ALS and id say you are wrong on the account that Lyme Disease isnt rare, I think statistics speak for themselves on that 1. Yes ill agree a great deal of Lyme cases are overlooked, but that is because Lyme is a mimic of many neurological conditions and also the least likely cause of neurological symptoms due to its rarity.

I think your consipracy theory of insurance companies working along with neurologists to avoid payouts is also a little OTT, if your neuro is the top neuro in the country and he cant diagnose or even consider Lyme disease as a plausable cause of your symptoms then he should be thinking about a different job.

I will not get caught in an argument with you about this, and this is the last I have to say on the subject. Lyme disease is a very serious condition and if you had it, you would have more than fasciculations to worry about.


you have this idea that you think that lyme disease is rare? were are you getting your facts!
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Postby uber on January 15th, 2004, 9:13 pm

Sorry that you feel so strong on the subject eric, for a start may I say that I never thought your original post was a joke. Id still say you are wrong on the account that Lyme Disease presents with the same early prognosis of ALS, Lyme's early symptoms are strange, they are often very vague but can be very severe. Id also say you are wrong on the account that Lyme Disease isnt rare, I think statistics speak for themselves on that 1, with usually only around 100,000 cases a year worldwide and a lot of this pends on the area you live and your lifestyle. Yes ill agree a great deal of Lyme cases are overlooked, but that is because Lyme is a mimic of many neurological conditions and in the majority it is probably the least likely cause of neurological symptoms due to its rarity and the circumstances that put you at greater risk for Lyme. Im also confused about you saying that neuros cannot test for Lyme, it was to my understand that an antibody test or spinal tap can give a very good prediction on wether somebody is suffering Lyme disease, and also Lyme disease in the majority of cases presents with a very distinctive rash. So if you take into account that there is 100,000 cases of Lyme worldwide diagnosed each year which is a statistic from http://www.wrongdiagnosis.com and 75% of that 100,000 statistically will have the "bulls eye" rash, im assuming you havent had this rash which would put you in the remaining 25% of people, so assuming you have the symptoms of Lyme, I think off the top of my head this makes yours odds of Lyme at erm... 80,000 to 1?? somebody could correct me on that but im pretty sure its right.

I think your consipracy theory of insurance companies working along with neurologists to avoid payouts is also a little OTT, if your neuro is the top neuro in the country and he cant diagnose or even consider Lyme disease as a plausable cause of your symptoms then he should be thinking about a different job.

I will not get caught in an argument with you about this, and this is the last I have to say on the subject. Lyme disease is a very serious condition and if you had it, you would have more than fasciculations to worry about.
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Postby eric on January 15th, 2004, 9:57 pm

eric wrote:
uber wrote:sorry that you feel so strong on the subject eric, for a start may I say that I never thought your original post was a joke. Id still say you are wrong on the accounts that Lyme Disease does not present with the same early prognosis of ALS and id say you are wrong on the account that Lyme Disease isnt rare, I think statistics speak for themselves on that 1. Yes ill agree a great deal of Lyme cases are overlooked, but that is because Lyme is a mimic of many neurological conditions and also the least likely cause of neurological symptoms due to its rarity.

I think your consipracy theory of insurance companies working along with neurologists to avoid payouts is also a little OTT, if your neuro is the top neuro in the country and he cant diagnose or even consider Lyme disease as a plausable cause of your symptoms then he should be thinking about a different job.

I will not get caught in an argument with you about this, and this is the last I have to say on the subject. Lyme disease is a very serious condition and if you had it, you would have more than fasciculations to worry about.


you have this idea that you think that lyme disease is rare? were are you getting your facts!


uber I dont mean to attack you im just frustrated at medical society, i did have the bullseye rash in 88 and took antibiotics. every year there after i had suttle effects of lyme. 90 heat in face,94 redness in face and tight muscles in the neck and off balance,95,96,97 after going thru many doctors and settling for anxiety. however my anxiety was all the time and unreal compared to literature in anxiety books. 98 and 99 tingling that was severe all this time started to stop. and 2000 to 2001 i walk up with severe vertigo only if I look up or down or turn head to side. at this time I started to get electric shock sensations across the top of my head along with extreme vertigo. as long as my head was straight up I was ok
then started not bieng able to think and wierd sensations of the body.I was told I had severe depression, then I had a fever and the fasciculations started everywhere. I went to the hospital and felt like I was going to die. they did not believe it was lyme and thought this was phsycotic disorder. I believed because of the severity of my symptoms that I was going to die of cjd. after I got out and said you have to controll your behaviour I felt myself getting worse till eventually I was jerking, hallucinating,wierd dreams. at this point I was ready to throw in the towel when I went back to my first doctor and sent me for a spect scan of the brain and it was positive. the antibiotic helped greatly but as I have gotten better I see the damage that was done. at this time I have alot of muscle atrophy in my calves and the biaxin is not strong enough to penitrate the blood brain barrier. I need to be on intravenous but so far there stalling and as they stall im losing neurological function. this is a terrible disease on one hand because it can be very hard to find by blood test when the bacteria is in the nerves. anyway that is were the frustration is this could have been resolved a long time ago of they would have just given the antibiotics.
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Postby uber on January 16th, 2004, 4:47 am

Hi Eric

Well I was never aware that you have had the bullseye rash, your original post didnt state this.

My thoughts on your recent post arent much different from my other thoughts, id really struggle to see with such a broad range of severe symptoms, that a neuro could simply overlook them as depression, did he at least suspect MS? id doubt he would of suspected cjd at any time, cjd is even rarer than lyme and the neurological picture after about 5 or 6 month is usually very obvious.

whatever happens with you eric, I wish you the best and hope you recover from your condition.
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