Where to go from here/Sugg Welcome

[Padro46]

Sorry So Long,  Just want to know has anyone else been involved with this kind of thing before and if so what can been done to find the answer??



November 2008-- Present Time: Still having minor AB and Chest Pains, Bowel Movements just not the same as prior to Dec07,  Back of the head numbing and brain
freeze/tingling, seems to have also moved to my face and jaw area, seem to be having
some balance issues not always but does happen.  Minor back pains, Brain Fog (Just
seem to be out of it). Vision appears to be worse/blurry up close, (have been to eye
doc no change)  Still tired but not as severe as early in the year, Un- refreshing
sleep, Sore Back(seems to always need popped, Periodical a stopped up head feeling
and very minor pain in and around ears. Will sometimes have tenderness in Lymph
nodes in Neck, Armpit and Groin. There are no factors that seem to change the above
it can be morning or evening seems to progress as the day goes on.  Do not have all
symptoms at the same time but have some of them everyday.   Results of testing are
enclosed for your review.    
                                                  
History I am 47 years of age 6 FT-190 pounds, weekend beer drinker and a reformed
smoker (quit in Jan 07) Up to Dec 07 NO health problems, had probable been to a
Doctors Office 10 times total in my life.  In Dec 07 I was on a business trip in San
Antonio, Tx when I began experiencing symptoms (all of a sudden like someone flipped
a switch) that included the following. Chest Pains and Burning (felt hot to the
touch) Back of the head numbing and what felt like an Ice Cream brain freeze.  I
also had this out of it feeling like a BRAIN FOG.  Not wanting to have a problem in
another town, I left and returned home 7 hours away.  My wife drove me to a clinic
where I was put on a EKG machine and the clinic Doc advised all ok gave me some
Meclizine put me back on Prevacid (which I had been on years earlier) for Acid
reflux and sent me on my way.  At this time I did not have a Primary Doc and made an
appointment with one.  This doc did Complete Labs, and found nothing but elevated
EBV numbers.  Doc advised would look at numbers again in 30 days due to this being a
Virus there was nothing else to do but Time also gave me some sinus sprays.  This
was a REALLY BAD time from the months of Jan-May I felt terrible, Chest Pains which
really had me concerned, TIRED all the time could not wait to get to the bed or
couch, loss of appetite, cold all the time, Dizzy/Lightheaded, back of the head
pain(really bad that a aspirin would not help) , AB Pains, Irregular Bowel movements
(still everyday but not as much product), Facial numbness/tingling, Brain Fog, Did
not want to do anything.  These was of great concern and due to not EVER having
medical issues I returned several times to my family doctor and the following are
the test and medications I have been on during this experience.

Test: Blood Test-X 5   CBC, Comprehensive Metabolic Panel, Lipid, PSA, TSH, Lyme, HEP Panel, HIV Panel, Rheumatoid Arth. Factor, Sedimentation Rate-Westergren, EBV Panel, B-12, Alpha Fetoprotein Serum, H. Pylori. From the months of Jan08 to the last one Sept08

Results:  With exception of EBV numbers (which all Docs say is no longer a concern)
and up and down Cholesterol LDL sometimes a little high--- ALL NORMAL XRAYS and CT SCANS--  MRI-(April08)  Brain(Normal)  November 2008 with Contrast all normal and C-Spine-(May08) (see results under other)
CT scan Heart (Feb08) and Abdominal (June08 Prior to Colonoscopy) ---All Normal
Chest X-ray X 2    (June 08) this one remarked a few calcified granulomas are
present. The Second (April08) listed Brocades otherwise No acute Cardio disease
identified. Colonoscopy and Endoscopy (June08) —Acid Reflux No other problems
identified ENT exam (Sept 08) - All Normal Full Cardio Work-up (Feb08) Echo and CT
scan, Carotid Artery Ultrasound- All NormalL Medications: That I am currently
using—Prevacid, (Acid Reflux) Dicyclomine spastic colon-(only three times did not
like side effects) some natural meds by Dr. Jernigan’s Borrelogen, Nutrametrix-OPC,
Fish Oil Tablets.  Nortriptyline (Pamelor) Not taking----Topamax    Other: C-spine Impression: Neural
Foraminal caliber is low normal or mildly narrowed throughout the cervical spine.
This appears to be the result on congenital factors as I see no evidence of facet or
uncovertebral hypertrophy.  Disc morphology is well maintained, as is spinal canal
diameter.  Have also seen an Infectious Disease Dr. and a Second M.D  2nd MRI of the Brain Neg.  MRA of Brain Neg  Waiting on Lupus Panel

[Padro46]

Results from bloodtest from Rhemmy---Only positive was Parvovirus B19, IgG  5.3     scale Neg 0.9--1.1
                                                                                                                                     Pos>1.1

IgM   0.1

Scale Neg 1.1

Vit D was still Low  24.0
Scale 32.0---100.0

Rhemmy follow-up Tomm Afternoon

[Padro46]

Nueros Last Visit under IMPRESSION  1. Cranial Neuritis--This may be a post infectious syndrome.  So far, this appears to be mainly peripheral in origin.  Catch all or What??  

[Padro46]

Thanks for responding, I have had the blood test for Lupus (Neg) But I know what you mean with all the false Neg and Pos.  Its a shame that a lot of the Doc thats ALL they look at is the lab results.  I have had them tell me that not in the bloodwork cant help you, If that was the case people with MS would neber get a dx.

[selmaS]

Anita58 is right, I have had lupus testing for yrs...told several times I was borderline.....my dr keeps retesting me for it, but in the meantime they did find other dx that were confirmed.

"selma"

[Anita58]

Lupus is like the little boy that cried "wolf." It can mask itself for years. It shows up in bloodwork called a Titer test. It may show up one time and not reappear for many years. Or it can show up once or twice in a row and then mask itself again. It usually runs in families somewhere down the line but not always. Hope this helps.

[selmaS]

...Chiari Malformation......was the  main dx and then we also found.....tethered cord, and mild scoliosis....

I was dx as depressed and given an rx for antidepression meds and was brushed off as just anxeity or attention seeking.

This condition is something I was born with, so there all u drs that thought I was making it up !!!  lol.....

[Padro46]

Selma, I forgot what was the main testing you had told me the Rhemmy did the other Docs did not??

[Padro46]

Ditto Ginak     Padro

[ginak]

i hope the rheumatologist that I am going to see within the next 2 weeks will do the same. I feel as if he is my last hope.

[selmaS]

He didn't stop testing untill he found out what was causing the issues.I had so many tests in a short period of time....it was crazy....but we found out what was the root issue.

Blood work, MRI's.....and ruled out Lymes, Lupus, MS.......


"selma"

[Padro46]

What was it the Rhemmy did for you the others could not/would not??

[selmaS]

me too !! : )

[Padro46]

I hope you are right about the Rhemmy

[selmaS]

Yes I agree with that, the rheumitoid dr I went to found many issues that I had going on that none of the other drs I had gone to could find....so I will cross my fingers that u will get answers.


Godspeed
"selma"

[Padro46]

Maybe The Rhemmy will be of more help in Feb than the Nuero I hear they are more of a Med Detective as it relates to medical issues

[selmaS]

steroids?...is that the meds?....oh my....well....go with ur gut.u have to b comfortable with ur treatment.

Since it is a possibility u have CFS....stop by the fibro/CFS forum.....others there may be able to relate and offer more insight.

Merry Christmas!!
"selma"

[Padro46]

Second Nuero did not really disagree with the first other than to say he would not give steroids just to be giv

[selmaS]

WOW!! ....what a bunch of u know what!!! Goodness.....I can totally understand u if ur were more than surprised!...sigh ....
This is y I am an advocate of getting copies of all reports....and educating myself on what is happening and having an understanding as to what the dr should be looking for.....remember to be checked for fibro as well.

Like she suggested...stick to  the plan they mapped out for u, but ask many ?'s.....

I'll keep my finger's crossed.

Good luck
Godspeed
"selma"

[Padro46]

Get this after I got to looking again at all the bloodwork from the year I looked at all the EBV bloodtest, From Feb to Present 6 test I think in all of them the numbers are almost just alike,  No high IgM which my primaries asst. says would indicate I have a active infection.  So I went to his office and ask to speak to her, He was out.  She said so you mean to tell me you had no high IgM, she looked back and said you have not since you have seen us.  This makes me believe even more that you did have SOME kind of viral infection back before seeing us (maybe not EBV) and it has brought on C.F.S. which she showed me the Neuro notes and he says the same thing.  I was wondering why ever doc along with the Nuero I went to other than my primary said it is NOT ebv.  She said to stick with the plan for right now.  

[PlateletGal]

"It is quite possible....even to get fibromyalgia as a result of a virus."

THANK YOU !!!!! I've been trying to tell people this for a long time now. And just today... this link was e-mailed to me by a website for CFS  & fibromyalgia info :


Infection as One Possible Cause of Fibromyalgia"

link: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=14187&B1=EM121708F

[selmaS]

Unfortunatly...I don't know nething about Epstein Barr.....but at least they have narrowed it down, and the vit D sounds like a good idea also.Hey, u just might start feeling better for the new year!!

It is quite possible....even to get fibromyalgia as a result of a virus. Have them check u for the tender points...there r 18 in all. U need to have 11 to be dx'd.

I hope this is a dx for u and the treatment offers u relief.

Godspeed
"selma"

[Padro46]

F.Y.I.  Primary called 2day after talking to the Nuero,  She advised had a very good diccussion with him and the plan is a follows.

1. 50,000 IU Vit D for 2 weeks,  After 2 weeks call if no improvement possible start on Predosone.  They both think I am fighting may be developing   C. F.S.   due to EBV     Nueropthy is from effects of the Virus.     What are your thoughts????

[selmaS]

hmmmmmmmmm.....u need to call that show mystery medical dx.

Well I am not a dr, but I can understand ur frustration.I am curious as to what ur drs do find.....if u want to talk...I'll be here.

Sorry I can't do more than that.

"selma"

[Padro46]

Have had both on 2 differant occasions with and with out contrast also a MRA of the Brain and Neck and a MRI of the C-spine, other than the C-spine the Brain ones have been a One page sheet that has said "No abnormalities"  Normal study