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Where do I go from here? Everyone in your forum sounds so supportive.

I am a 41 year old very active female who was in good health.  On October 3rd I noticed I had a scratchy throat.  Since my daughter had just been sick I thought maybe I had what she had so I took my temp.  It was 99.1.  After about 4 days of this I went to the doc and he thought I had a sinus infection so put me on amoxicillin.  That did nothing so put me on Augmentin.  By this time I had become very shaky, still had a low grade fever (usually comes on in the afternoon and in the 99's).  There were a couple of episodes early on where I was shaking uncontrollably and felt so cold.  I took my temperature during one of these episodes and it was very low (97).  The shakes would subside fairly quickly and I haven’t had the total uncontrolled shaking since.  I sometimes also felt like my skin was burning when I touched it.   However, at these times if someone else were to touch me they would say I felt really cold.   I felt like my calves were “buzzing” and my knees were shaky.  About two weeks after having these symptoms I felt flu-like.  I had headaches, very fatigued, still had the low grade fever, muscle buzzing/vibrating (mainly in my legs but sometimes in other places).  After about 4 days of the flu-like feeling, the headaches went away and I wasn’t as fatigued.  I still felt the buzzing, was cold a lot, and would have the temperature swings/chills.  I had also started to experience sensations of numbness on both sides usually (legs, arms, shoulders, around my eyes).  These sensations come and go and are not every day.
Now we have reached a plateau with these symptoms.  I have muscle buzz, twitching, chills, get cold easily, occasional numbness and it has been 8-9 weeks.  I wasn’t depressed before all this started but I would have to say that I am now.
Have tested CBC (normal WBC), hepatic enzymes, rheumatoid factor, ANA, lyme, C-reactive protein,  blood cultures, etc…  All normal.  Thyroid was tested (TSH and T4) and  came back normal.  Had a CT scan of abdomen and all organs look normal.   Normal MRI of head and neck on Nov. 10th.  Early on (Oct. 20th) they did a West Nile test but both my IgM and IgG were negative.  They did a second West Nile (Nov. 10th) and my IgM was negative but my IgG was positive.  Don't know what that means.

Where do I go from here?
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147426 tn?1317265632
Well, Wecome to our little house and I'm sorry you feel so lousy.

Nothing you have describes things we see in MS.  So, I think I can reassure you a little there.

My first, second and third reaction were infection, infection and infection.  Specifically it sounds like a viral infection.

The West Nile thing has to be evaluated and I hope your doctor is consulting an Infectious Disease specialist.  West Nile doesn't always, I don't think, cause a severe brain infection, but may cause a flu like illness and many of the symptoms you have.  Your headaches may have indicated a mild encephalitis, espeically if you were very drowsy or little confused.

The appearance of IgG at about 6 weeks of infection is about right.  I don't know if the absence of the early antibody, IgM, is an accurate one or not.  I haven't researched West Nile.

*********************
Just a little info here.  After the beginning of an infection with soemthing you've never had before, the first antibody to appear is IgM - which is specific for that disease.  Then after about 6 weeks the IgG appears and within a short time the IgM disappears.  Then the IgG titer (level of antibody) rises pretty rapidly for some time.  After a few months, the IgG falls to much lower levels and often remains positive for life.
**********************
If the West Nile thing doesn't go anywhere, then your symptoms are also suggestive of Lyme Disease.  The screening test for Lyme Disease is not very accurate (many false negatives) and that should be repeated and, I believe that the second order test should also be run.  This is called a Western Blot.

So, your case should be considered by an Infectious Disease specialist, perferably with a full evaluation of you.  He might suggest a spinal tap and I think this would be a good idea.  In a couple weeks the West Nile IgG titer should be repeated and, if that is the infection you have, then you would expect the titer to be rising rapidly.  But, all of this should be done with the ID doc.  West Nile must be reported to the CDC.

Good luck.  Keep us posted.

Quix
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572651 tn?1530999357
Hi and welcome,
The one thing that jumps out to me if  I understand it correctly, fever, even a slightly elevated one, is not a symptom of MS.  If I'm wrong about that someone else will correct me.   I hope you will keep us posted on your progress - we are very good listeners.  Lulu
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378497 tn?1232143585
re: West Nile, are they going to follow-up with a NASBA test or have they done that? Has anyone talked to you about that? Also, has anyone mentioned testing your CSF for markers of inflammation?

Bio
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Avatar universal
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Avatar universal
Hi, I want to welcome you to our forum, it really is a great place with great people.

Wow, sounds like you've had your fair share of tests!!  I don't know what a positive lgG would mean, but there are others here who will.

As for your MRI, was it done with and without contrast, and did they use MS protocol?  That is usually the standard when testing for MS.  What strength machine did they use?  The best these days is a 3T.

There will be many others that will jump in here and help you.  While you are waiting you might want to check out our health pages, they are just so informative.  You can get to them by clicking on the health page icon in the upper right hand corner of the page.

Hope you will stay with us, this is a great place to be when you need answers and support as you are trying to get a dx.

doni
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Avatar universal
I'm sorry you are going through so much right now.  I can relate to not being depressed before but you are now.  All the testing and no answers is very hard.  Just know that you are not alone, and this is a great place to come to for support.  I don't have any answers for you, but there are others on here that I'm sure can give you some insight that may help.  I hope you have a good doctor that is understanding and willing to try to get to the bottom of this so you can move on.  Take care and keep in touch.

Puff
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