not diagnosed

Hi

Unfortunately 4-1/2 months isn't a very long time if no lesions are showing up on an MRI.  Some folks have experienced symptoms for years before reaching a definitive diagnosis.

Have you had bloodwork and other testing done to rule out other causes for your symptoms? There are a lot of ailments -- some neurological (like MS), others metabolic, like diabetes, thyroid problems, infections in the nervous system, and others -- that share similar symptoms, and all of these need to be ruled out before a doctor settles on a diagnosis of MS. 

If you haven't had any of these tests done yet, you might start with your family physician, who can do a lot of it, and then consider a rheumatologist, in case what is ailing you is something like lupus, or even allergies, which can develop suddenly even if you've had no problems in earlier years.

Have both your MRI's been of your brain? You might consider getting one of your spine, where lesions sometimes show up before they appear in the brain.  And has your doctor scheduled you for evoked potential tests, or a spinal tap? All those might help lead to a diagnosis, too.

I'm sorry you have to deal with any of this...

Violets, I have a question.  I always hear you and others say that the lyme tests aren't accurate.  Why would they even be used if they weren't accurate?  I'm just confused.  I had two lyme tests, both negative.  If they weren't accurate, wouldn't the doctors order some other test?  And what is it that makes these tests so inaccurate?

The tests are inaccurate because...not all medical tests ARE accurate. And there are advanced tests for Lyme that are more accurate..but even they can come back with incorrect results.

You have to identify a doctor who is willing to look at *any* tests..Lyme, MS, whatever...as just one tool in his toolbox, and the doctor has to look at all the *other* signs, symptoms, history of the patient, what is happening now with the patient, other test results, all that -- to reach a diagnosis, and not just depend on one test, or repeat the same test over and over, coming up with the same results.

The initial Lyme test that doctors will order does often come back with wrong results. If the patient is still exhibiting symptoms, and has any history at all of being where he might have gotten bit by a tick, the doctor and patient should indeed go on to find the source for the more accurate (but not always!) tests.

As for the "taking antibiotics and see if I'm better" test -- not many doctors will just randomly prescribe antibiotics unless there is some evidence that indeed there is something awry in the body that would benefit from antibiotics. So you do have to pursue the advanced testing if you do suspect that perhaps you have Lyme. You might consider that as a last resort, after everything else more common has been tested for, and ruled out.

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

Dear Sashi:

I saw you had a question and I too thought I had MS and it was Lyme Disease.  It took about 6 months of being sick and then it showed up in my blood work not to mention the fact that I had about 25 symptoms of Lyme Disease.  If you would like that list, I will be more than happy to give it to you.  And, it is posted several times on the Lyme Disease Forum. 

Hard to believe that there is not a test that is accurate for Lyme Disease but there is not.  A good analogy might be this.  A friend of mine was very sick.  She went to the doctor saying my body hurts, I am really tired etc. and they said, "Everything is fine with you."  Six months later she died from cancer that spread through her entire body.  The point I am making is the cancer did not even show up in her blood count and when the doctors saw her blood work looked fine, they dismissed cancer.  You would think that there is a reliable test for many diseases and most importantly cancer but there is not.  This unfortunately happens all the time and that is why a doctor must look at the symptoms.  Oh, by the way, I know of several people in my area that had the classic bulls eye rash from Lyme Disease.  Now, that is a sure sign you have it but guess what?  Their tests came back negative.  Many of us NEVER see the rash because how often do you look at the back side of your body or your skull?

The point I am making is don't give up.  You know you feel sick and it could be anything including MS, Lupus etc.  Check out everything.  I did this and thank the Lord above, I was diagnosed, got on antibiotics and started to turn my life around. 

Good luck and take care!

Robin O.

 

 

I agree with many on the forum. I personally have had more MRI's, enough blood work to keep Dracula happy for a very long time and a ton of other tests..........why? Because my doctor team wanted to rule out or find....anything they could. Since my experience started, not because I went to the doctor or even thought about symptoms, rather because my eye hurt, my glasses weren't doing the job and I thought I need new ones. My OP reconized my ON and started me on a long, and painful journey. Some good doctors, some pretty narrow minded. Symptoms that put me in bed for almost a month. I had no idea what was going on, and the talk of MS upset me pretty bad. Well, to make very long story short, they ruled out what seemed to be a hundred things. Could I still have some of those things they ruled out....yes, of co**** I could. If finding a dx for MS is uncertain, why can't Lyme or the other mirror images of what MS may cause, also be uncertain.

The point from my perspective is that 5 doctors have done the best they could to find out what it is, and even with a clear headstart of ON and a flunked VEP, an questionable MRI they would not accept MS until they ruled out as much as they could. Could I have Lyme or Lupus or something else....not likely now, but mistakes can be made. I still reject the fact that they are sure that I have MS, and we are still discussing Meds, but everyday I am glad that they were so precise, so careful, not to make mistakes, and to rule out as much as possible. I have seen with my own eyes, my brother in law... told that he was wonderfully healthy after his physical, and he dropped dead in the parking lot by my side and the autophsy showed he had massive stroke (at 42). But he was wonderfully healthy.

It has been 7 months today that I went to get my glasses fixed. I am now going through some more tests. Another MRI a week ago.
Extensive blood test on Monday again. Why? To make money perhaps? I know my team better than that. They are making sure that my symptoms which are increasing again, are because of my MS or is it something else they overlooked. Will they look for Lyme or anything else again.........yes, they will and have told me so. These disease's are all terrible, life sucking, problems. It took me months to get the right doctors that care......about me..........not the debate about what I do, may, or will, have.


As has been noted. Listen to your body. See a doctor if it feels different, start the journey to find out what the problem is and although forums like these, and information on the net are wonderful resources, there is NO substitute for getting doctors involved. And accept the fact that some are better than others, some labs are better than others, some advice is better than others..... Find the experts, let the experts do their job, and you will have your answer. Perhaps not tomorrow or 3 weeks from friday, but if you really want to feel better, really want to find out was is wrong, persist. There is no rule that says you can't pursue Lyme while your doing the same with MS or Lupus or? Speak your concerns, and "what if's" to your medical team. If they won't listen, move on to others that will. Then after all that, you think a mistake has been made, the meds don't work, whatever........start the journey again.

That's the way I see it..............

Good Luck

 

I am not sure where the ***** came from....oh well.......the word is "co****".

Well, of course it picks out vulgar words. I think "course" was the word you were trying to use? Why would it censor it? Let's see if it does here...

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

uppity,

you were right with the word and it showed as it was meant when you put it in. wierd eh?

LOL...sensors!!!

I had it do that to me once and I couldn't think of another word to use, so I just left it! (It wasn't vulgar either!) Computers have minds of thier own!

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Thank you all for posting responses. That was very kind of you. Yes, I've had bloodtests for lupis, lyme, etc..and will be repeating them next month. I've had MRI's of spine and head. The test where they shock you on your feet and hands (which really kind of sucked).All negative. My neurologist thinks it's ms because of my history and my reactions to the tests in his office; the one's that are sort of 'relfex' tests with the mallet.

I will keep testing periodically I suppose. For now I'm controlling my pain with gabbapentin. It works if I take it strictly on time. It does not control the other wierd twinges/ feelings that I get but that's OK, I'll take those over the pain anyday.

Thanks again for your informative responses. Best wishes to all.

kimmyco