Questioning MS diagnosis?

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shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 8/25/2006 4:51 PM (GMT -6)   
Hi All,
I just posted on the lyme forum as well.  After all this controversy about MS or Lyme I'm really confused.  Should I question my MS diagnosis?  I am just getting to the point of acceptance and now I'm feeling weird about it.  I'd appreciate any advice you all have, I'm just not sure that I should even have to worry about this.  My hubby says for me to not even think about it.
Michelle ><>
 
"Life shouldn't be a journey to the grave with the intention of arriving
safely in a pretty and well preserved body, but rather, to skid in
broadside, thoroughly used up, totally worn out, and loudly
shouting...."Wow! What a ride! Thank You Lord!!!"
 
 
 
 


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 8/25/2006 5:17 PM (GMT -6)   
Hi Michelle,
 
As I posted to you before, I think it's great that you are questioning your diagnosis.  It's your body and only you know what you feel.
 
Below is a link to a website that may help:
 
 
I honestly don't like to see anyone suffer from any misdiagnoses.
 
Denise
 
 

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/25/2006 7:02 PM (GMT -6)   
Here is one credible site that talks about what Lyme Disease is: 
 
See if any of your symptoms or experience matches, then decide if you need to question your diagnosis.  Good luck.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 8/25/2006 7:10 PM (GMT -6)   
Uppity,
Do you and your husband have similiar symptoms?  I have read your web reference (thanks!) as well as lots of others.  To my knowledge, I've never had a tick bite, bulls eye rash, swollen joints, or some of the others but as listed, I do have the MS symptoms of the rest.  This is all so frustrating...I really don't want to have to go thru more and expensive testing. (I just can't afford the cost nor the stress!)
 
Has anyone ever been mis-diagnosed with lyme only to find out they have MS???  Everything I read (mainly post-wise) says that the normal lyme test aren't accurate...well, why do they even have them?
 
Thanks!
Michelle ><>
 
"Life shouldn't be a journey to the grave with the intention of arriving
safely in a pretty and well preserved body, but rather, to skid in
broadside, thoroughly used up, totally worn out, and loudly
shouting...."Wow! What a ride! Thank You Lord!!!"
 
 
 
 


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 8/25/2006 7:32 PM (GMT -6)   
Ok, I was trying not to get in on this debate, but I have to say that a lot of the information on the American Lyme Disease Federation's website is flat wrong. Maybe a few people have been cured by those methods; maybe many doctors believe the information posted there. But I can tell you that my PCP used that protocol for treatment, and here I am 5 years later with a terrible case of late-stage lyme. Actually, now I'm mostly better because my lyme doc did NOT follow that protocol but used more aggressive treatment. I also had ehrlichiosis and babesiosis -- tested positive for them, had all the symptoms (um, many of which were not listed there) -- which the ALDF website indicates would be nearly impossible for me to have. Some lyme researchers have actually surmised that up to 80 percent of people with lyme are co-infected with babesiosis, and research shows it to be at least 40 percent. I won't even debate the rest of the info on that site right now; just wanted to point out a few glaring mistakes. Uppitycats, I don't know why you seem to dispute the information on lyme that hundreds or thousands of people on lyme boards all over the world are sharing. Shellypoo, it's up to you, but if you think you have could have lyme, you should follow the advice of the thousands of lymies who are now getting better -- and who actually became sick as a direct result of the kind of information the ALDF is propogating.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/25/2006 7:34 PM (GMT -6)   

Shelley, -- and all you Lyme Advocates out there -- this is MY experience and my husband's experience only.  Our experience might not mirror yours.

No. My husband's experience was NOTHING like what I experience with MS.  If I had to compare what he experienced, I would say it was more like someone with a really awful case of flu -- body aches, pains, swollen joints, major fatigue, fever, night sweats.  He never got the typical bullseye rash they talk about, although he did experience a rash on the leg that got bit...just not near where the bit was, so it may or may not have been related.  This occurred maybe a week or so AFTER he got bit (or at least, a week or so after he was camping, where it was most likely that he got bit).  He felt awful, then OK, then awful again..went on for about 4 weeks before I finally got him to go to a doctor.  After she examined him, discovered the swollen joints, took his "history" (his complaints about the body aches, pains, swollen joints, the re-curring symptoms, etc.), she was convinced that it was Lymes and started the course of antibiotics before ever sending off the blood sample to be tested.

It came back about a week later, as "positive".  He was on the antibiotics for a month, then re-tested.  She extended the antibiotics for another month, as the test still came back positive. After the second course, the test came back negative, but she had him come in for the next 2 years on an every-four-month basis to be tested, just to be sure.

He was still suffering from the fatigue and some body aches and joint pain, but it dissipated over time.  This was 3 years ago. I'm guessing here, but it seems like it was about 18 months or a bit longer before he felt good again.

I know that this site (and a host of others) talk about long-term neurological deficits.  As best as I can determine, while there may well be neurological problems with late-stage Lyme disease, they are different from what folks with MS experience, and different from what follks with long-term MS experience.

I also know that all the Lyme advocates will be here bashing me as quickly as they can, doing their best to prove me wrong. I'm sorry you have to bear the brunt of this.

 

 

 

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 8/25/2006 7:35 PM (GMT -6)   
OK all, I'm closing this thread on Lyme, I didn't mean to get a debate started.  This is the stuff that has gotten me all confused and I don't want others to be so confused, either.
 
I really don't think I have lyme but I will mull it over some more.
Michelle ><>
 
"Life shouldn't be a journey to the grave with the intention of arriving
safely in a pretty and well preserved body, but rather, to skid in
broadside, thoroughly used up, totally worn out, and loudly
shouting...."Wow! What a ride! Thank You Lord!!!"
 
 
 
 


Gretchen P
Veteran Member


Date Joined Sep 2005
Total Posts : 1784
   Posted 8/25/2006 8:29 PM (GMT -6)   
shellypoo,
Please don't get frustrated by the context of posts. We are primarily here to give support to anyone who needs it. I urge you to follow your gut and take your health into your own hands. If you are questioning something, get a second opinion.
 
No one else is going to be an advocate for your health but you. I hope you can find some answers! Peace!
I'm gonna get that Lyme!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 8/25/2006 9:46 PM (GMT -6)   
Hi all,
 
I really don't think this thread should have become a "debate".  In my eyes, the bottom line is trying to help each other get better and support each other no matter what forum one posts on.
 
I don't feel it's about trying to be right or wrong or "bashing" anyone.  To me, these forums are about giving accurate information and support.  Yes, I supplied a link that had information that I thought was helpful, I wish someone had given me information when I was searching for answers.
 
I became so sick that I lost the use of my legs and I still didnt have a diagnosis.  I think if a doctor would have told me I had MS, I probably would have believed the doctor because I was so desperate for a diagnosis, or a label that fit my symptoms as I went doctor hopping for a duration of 5 long years.   Believe me, I did lots of research for myself on MS as I thought I really had that as I never thought I had Lyme at that time.  I never saw the tick that bit me or felt a bite. 
 
I guess what I am trying to say is that I don't think people should take any of these posts personal, but to keep an open-mind and support each other. 
 
Shellypoo, once again, I admire you for questioning your diagnosis, why not rule out Lyme?  I apologize to you for anyone here that has caused you stress. 
 
I am not bashing anyone here, just trying to help.  Is that so wrong?
 
Denise

photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 8/26/2006 1:17 AM (GMT -6)   

Hi Michelle,

It's got me thinking too.. but I think in my case it's wishful thinking.  I have a family history of MS and Lyme is rare in BC, Canada.

Lyme peeps..

-can Lyme cause spinal lesions, severe constipation, or bladder problems?

I don't have any joint pain at all.

Thanks,

Shar

 


LexiLex
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/26/2006 6:33 AM (GMT -6)   

Shar,

Yes, Lyme can cause lesions, constipation and bladder problems.  But of course so can many other things!  I didn't have much joint pain.  The confusing thing about Lyme and MS, lupus, ALS, CFS (and the list goes on) is that everyone is affected differently.  I feel like I'm in an episode of the Twilight Zone sometimes. :-)    Anyone else think that too?!

Best wishes,

Alexia


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 8/26/2006 7:10 AM (GMT -6)   
Hi Shar,
 
I just wanted to add the Lyme is very common in all parts of Canada, especially in BC.  Below is a Canadian website that you may find interesting with many links including lyme disease in British Columbia.
 
 
Denise

DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 8/26/2006 1:24 PM (GMT -6)   

 

  Shar...I agree with Denise. My brother-in-law from Vancouver had a severe case of lymes and was very sick with it. Also, debate can be a good thing if one is not doing it to be a star just because they feel they are right. Eveyone one has to be their own advocate but if we can give each other food for thought then we can go forward and hopefully find our own truth about what is right or wrong for each of us but hopefully with the support of all!!!  Dale


gulliversgal
Regular Member


Date Joined Aug 2006
Total Posts : 28
   Posted 8/26/2006 2:11 PM (GMT -6)   
shellypoo,
 
i think it's intelligent to seek a second opinion about any medical diagnosis.  most neurologists will say if you want a second opinion all your tests are available for you to take with you.
 
cyperspace can be very informative, OVER informative at times.  nowadays all you have to do is google your symptoms and whalaa.....you have many ideas as to what's going on.
 
with that said i think sometimes anyone can have any illness they want and many illnesses mimic one another.  if you think you have a certain illness, go to that message board and most times than not someone will have similar symptoms.  most message boards will not convince you that you have that particular illness they will make suggestions of traditional testing and other rule out illnessess.
 
sometimes, however, boards can be very convincing that people have that particular illness and some people may even encourage you to seek out non-traditional approaches to illness.  this begins to cost money out of pocket and in some cases people actually forgo an exisitng diagnosis because a; they might still be skeptical or b; they haven't come to terms with it.  or c; they have both condiitions.  this however can create the belief that if they stay on meds long enough, even if they get worse, they will get better.....and i know people do get better but for some that other illness was not their main problem and they forgo the advances in traditional medicine, become increasingly worse and still believe they will turn it around years after neglecting what all the medical tests pointed at.
 
i know this is a controversial subject but you know your own body, and have taken a position to explore all other options.  that's commendable.  their are alot of supportive people on these boards to help out and make suggestions.  I know alot of people are strong advocates of certain labs for certain tests but you can also see that even if a test from that lab comes out negative there will be people still saying, "that happened to me but the serum wasn't spun right, i didn't test at the right time, etc......
 
it's interesting to see different views on things and how we are all here trying to figure out medical mysteries and symptomology....
 
good luck to you
karen
 
 

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 8/26/2006 2:47 PM (GMT -6)   
Karen, well said. 
Michelle this is exactly what I worried would happen.  People with firm dx's of MS will start to question their Dr's because of the fanaticism that seems to be surrounding this board when it comes to Lyme.  When the Lymies make comments such as "I can't believe people BUY INTO THE MS DX's" it makes my blood boil. 
As long as i've seen you post I've never seen any indication that you were seeing some quack that's lead you to believe in a false dx's.  To the contrary, you've always seemed to trust in what your Dr has done and been through the exhaustive amount of testing that we all have had before getting our dx's. 
MS and Lyme have SOME symptoms that they share but not all.  But so many other illnesses and syndromes do too and they too are ruled out before an MS dx's. 
And as far as the statements made by the members of the Lyme board that they are only trying to help someone in need, that's nonsense.  When 4 or 5 come over from that board and create controversy, this is obviously NOT HELPING those in need. 
Rest your little heads at night Lyme board members, that we have your back and we will refer people to your board that are in limbo and may need some help regarding a possible dx's of Lyme. 
By the way, I went on the Lyme board the other day to see just what it is that Lymies are so upset with the MS board about and what I read was not good. 
One of the posts screamed out for all Lymies to respond to a possible ms'er that had all the "Classic Lyme symptoms".  Give me a break.  One Lyme member is enough.  We don't need 4 or 5. 
Mods - Isn't there something that you can do to stop this craziness cause obviously asking them politely to limit their controversial behavior isn't working.  

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 8/26/2006 2:53 PM (GMT -6)   
As a mod...I'm sorry I ever posted this.  Yes, it was bugging me because I did start to wonder about the MS vs. Lyme thing but as I've talked to many people I know I feel very comfortable that all 3 neuro's I saw prior to my diagnosis, were reputable and did test me thoroughly.
 
I am thankful for poeple to have a site to check symptoms etc...but we do have to remember (me included) that no one on here is a doctor and we are all just guessing.
 
Thank you Karen and DGB and Uppity, I do feel this is MS and just that.  As for the Lyme folks, I appreciate your concern and I'm sorry I have created a dilemna!
Michelle ><>
 
"Life shouldn't be a journey to the grave with the intention of arriving
safely in a pretty and well preserved body, but rather, to skid in
broadside, thoroughly used up, totally worn out, and loudly
shouting...."Wow! What a ride! Thank You Lord!!!"
 
 
 
 


gulliversgal
Regular Member


Date Joined Aug 2006
Total Posts : 28
   Posted 8/26/2006 3:11 PM (GMT -6)   
DBG,
thanks....it is a very interesting controversy that has seem to become an epidemic.  i've been posting on the lyme board and lurking about.  there are alot of knowledgeable people around.  as there is alot of "coercing" to join the brigade.  i have been undergoing more tests than i ever thought possible.  i have no diagnosis.  i have a lot of symptoms, that mimic alot of diseases.  i do know from my neuro that i don't have "alot" of things.  and i trust her.  i'm very glad, i did say to myself if ms was the worst i had, so be it, there's alot of progress and alot of people living very high quality lives with todays treatments.  so far i don't have ms either.  mri of head and neck clear.  they'll do tspine and lumbar if symptoms persist but she doesn't think so.  nor do i. 
 
i felt the need to jump in because i see "alot" of people being encouraged to pursue lyme.  i don't think it's healthy for people to jump in on boards and suggest people pursue other diagnoses when they don't fit the bill.  their are some very impressionable people in cyperspace.  their are also some very young adults, which fit the age group of ms, that are afraid and may not be ready to come to terms with a diagnosis.  understandable, very understandable.  i don't know what the ulterior gain would be, but i have recently become very suspicious of llmd and IGENEX.  i do understand some people have chronic lyme and some people need to puruse a doctor familiar with lyme but not everyone has lyme.....actually alot of people do not.......
 
 i see alot of young women posting with "ms" symptoms and it frightens me to think they won't take advantage of today's medical advances.  currently i'm taking a 30 day supply of doxy for lyme.  yeah i tested negative but had tick, rash, symptoms, live in mass.....recent bite two months max....but do i have lyme? don't know.  maybe.  do i have maybe knee problems, back problems, thyroid problems, bad diet all masking as lyme.............PROBABLY.....
 
it's not only here that certain conditions are seeking recruits.........and i know lyme has become a big issue, depending of course where you live......but to be honest it's almost become cultish, everywhere you look, if you have parathesis, weakness, vertigo...etc, someone is popping up saying LYME....seek llmdl, antibiotics for a year, etc.....
 
good luck and shellie poo - your with a group of people who can really guide you traditionally
karen

DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 8/26/2006 5:54 PM (GMT -6)   

 

 hi again,

 I think that we have hit on a very interesting point and that is we are not doctors and that we must be supportive as only those who deal with chronic illnesses know what they are going through on a daily basis. I watched a documentary a while back on the author Carol Shields and she very correctly pointed out that even though the future is an uncertainity for all of us, it is human nature to overlook this. However as she quite correctly pointed out when you are chronically ill you realize that this uncertainity is a very real thing and we have to live with it up close and friendly irregard of what people see on the surface. She has since passed away.Yes there is the physical deficits but it is the cognitive ones that no one sees that concern me the most. Michelle don't be afraid to explore your options but also believe in your medical caregiver and only question what does not fit. Medicine is not an exacting science and it is doing the best it can. This is especially true when it comes to MS and other diseases that are so variable and at times are difficult to diagnose. Just don't jump on a bandwagon. Like you said life is a journey and we will not come out of it unscathed (nor should we)! Questioning even though it will sometmes confuse us will not otherwise hurt us.  You have a strong faith  so follow that and believe in that. It will work out as it should, but in the meantime you will have explored all options.  Know this is a rant but have only the best intentions,   Dale


LAO1164
Regular Member


Date Joined Jan 2006
Total Posts : 285
   Posted 8/27/2006 9:46 PM (GMT -6)   
hello all-
My 2 cents - we all realize that none of us are doctors, but when your health starts to take a turn for the worse and there is no definite diagnosis, it is good to have somewhere to turn for information. I think we are all intelligent people, and can take each other's opinions into consideration. I don't think any one of us is so impressionable that we would just throw a diagnosis we believe to be true out the window b/c of a few opinions. 
 
I know when I didn't know I had Lyme and all tests were "normal", it was the worst time of my life. I appreciated any input anyone had as to what could be going on with me. I talked to as many people as possible, and when I went down the Lyme path, I ended up with positive test results, and am on the road to recovery. I think it's very important to point out options to someone who is questioning their diagnosis or is not responding to treatment to either confirm the path they are on or realize they are on the wrong path.
 
We aren't doctors, but it is our bodies, so we don't have to sit back and take any doctor's opinion on a diagnosis if it is not clearcut or is atypical. I saw some of the "best" doctors in the area, and they were wrong. It is a PRACTICE of medicine. I work with doctors every single day, and they are human. I get passionate about Lyme, because I see people suffering who it could be a possibility for, and Lyme is highly unrecognized where I live. It's just another thing to throw into the equation.
 
That's all. :)

got better things to do
Regular Member


Date Joined Jan 2006
Total Posts : 176
   Posted 8/27/2006 10:26 PM (GMT -6)   
hello all,
you lymie people have all msers heads spinning,please let them be there own advocate.My oppinion is that if you are not comfortable with your dx, then press on. I am one with MS I have been tested out the ying yang for other various diseases before getting the MS dx.I have all the faith in the world with my neurologist and his ability to order appropriate testing that I went thru, to be able to come to the conclusion that yes indeed,I do have have MS.


BE YOUR OWN ADVOCATE IF YOU DO NOT FEEL YOU HAVE BEEN PROPERLY DIAGNOSED ...........ONLY YOU HAVE THE POWER TO PRESS ON AND FIND THE MONSTER THAT IS MAKING YOU ILL!!!!!
Just when I was getting used to yesterday......Along came today.
 
             
~~LIFE~~

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