MS, Lyme, CFS? I think I just need to stop reading

[Yond]

I am so confused. In the interest of space please read my profile to see my symptoms if you are curious.

I don't know which way to turn. So many symptoms match in these three conditions. It takes so long to get positively diagnosed what do you do in the meantime?

Is there some tests I should be asking for or should I just keep my mouth shut and let my internal medicine Dr do his thing?

Cyndy

[EricaO]

I am in the state of Texas and I have Lyme and Lyme in Texas, especially Dallas is unheard of and I am being treated for the THIRD time!

[patsy10]

What you went through is very similar to what I went through.  I tried the normal course to no avail.  I saw a total of 5 or 6 neuro's and one was an MS specialist.  I was forced to seek an llmd as I had the rashes and the others were no help whatsoever.

Like SOONERMOM  said, don't let people tell you there is no lyme in your state either.  I was told the same.  Funny, I am about 90 minutes from western PA where lyme is endemic.  What, do bugs stop at the border?  I don't think so.  It's absurd.

[SOONERMOM]

Hopefully you have gotten the MRI results by now.  I would definitely agree that you should see a neurologist.  From what I remember, the pattern of numbness that you describe in your hands and feet sound more like peripheral neuropathy...which is different than MS which is a central nervous system problem.  The facial numbness and muscle issues are symptoms that I had/still have some.

I am just down I-35 in Norman.  There is an excellent MS specialist at Mercy, if you do need to look into that further.  I will PM you his name if  you need it.

Let me just say one thing about our state.  It is almost impossible to get diagnosed with lyme disease, even with a CDC positive test.  If you have a screening test, just know that it isn't the most accurate and you may need to look into a lab in CA (IgeneX.com) that specializes in tick borne illness testing.  Bottom line is, just because they tell you that you don't have lyme, definitely doesn't mean much!  I had to go out of state to get treated, even with a very positive western blot (confirmatory) test.  Just try to keep this in mind as you search for a diagnosis.  When things don't add up and many doctors can't seem to help you, it often ends up being lyme disease.  When they tell you that it doesn't exist in OK, they are wrong.  After diagnosis, I found out that some of my neighbors also had lyme (we live on acreage).

I know how it is to linger without answers and how difficult it can be especially this time of year.  You hang in there and know that there IS a diagnosis out there for you!!

Stacey

[PlateletGal]

Hi Yond,

I know how frustrated you must be. Here are some tests that can help your physician rule out or diagnose CFS. Of course an MRI should be done (but please check out this link about abnormal MRI's found in CFS patients). Also, lyme testing and numerous other tests should be performed before getting a CFS diagnosis.


http://www.medhelp.org/health_pages/Fibromyalgia/Diagnostic--Blood-Tests-to-Help-Diagnose-CFS/show/376?cid=39


I'm crossing my fingers and toes for ya and hope that you get your diagnosis very soon.

[wonko]

I think patsy10 gave you some good advice above.  

My path was to see conventional doctors first, which for me included my physician, several neurologists, an ophthamologist, and a rheumatologist.  When they couldn't nail this thing down, that is when I sought out an LLMD.  While it is a difficult course to travel, I think it is necessary.  I am glad other conditions were properly tested for and investigated.  I did have some abnormal results, but nothing specific enough to diagnose a condition.

I don't think you should stop reading.  Like many, I was only able to find treatment for Lyme by going off the beaten path and against the advice of my other doctors.  I think Lyme is a very confusing topic, and I am still in the process of learning about it.

Good luck with the neuro and testing.

[patsy10]

I think one of the most important tests has been done (MRI).  I hope it was with contrast. Hopefully you will get your results soon.   I've had many of your symptoms.  A lot has improved with antibiotic treatment.  My MRI's, LP and all other tests were normal.  I read and researched to the ends of the earth.  It does add more stress.  Especially when we have so many scary symptoms.  But it's also very stressful to not know what it wrong with us.

Many women who have had children develop stress incontinence as we get older and enter menopause or perimenopause.  I don't have this problem and have no children but I know lots of women who do.  Not saying this is the case with you either but it could be.

Anyway, I've been where you are at right now and I think it is an individual decision but I personally think everyone with neuro symptoms should see a neurologist.