What is happening to me?

[Conniekim]

Up until 1 1/2 years ago I was in great shape. I was an open heart circulating RN but due to Rt. arm and neck injury I currently am not working.  I am 44 years old.  I've ran 2 marathons and use to bike the MS 150.  But, now I have the following sypmtoms and lab results and feel exhausted and achy all the time.  My neck discomfort really causes me concern. My rheumatologist doesn't seem concerned.  My IM states she thinks I might have MCTD.  Any suggestions would be greatly appreciated.  Not sure if I should see another Rheumy., what's going on, or if this is all in my head.

Labs: ANA is now 1:80 speckled - was normal, Sed Rate 23H, Cardiolipin AB IGM 10H, Immunoglobulins IGM 826.  Everything else is within range.
My sypmtoms are: hair thinning, dry, irritated eyes, frequent eye twitching, occ. floaters, sinus congestion, post nasal drip at noc, frequent canker and mouth sores, occ. throat fullness and difficultly swallowing pills, neck pain/stiffness with frequent burning sensation to right side of neck - cervical epidural injection x2 with little relief, neck clicking with moving of head C3-4, C4-5, C6-7 disc-type defects, occipital pressure, frequent HA

[holisticone]

Don't rule out mold exposure.  Many molds are neuro toxic (Stachybotros) and/or produce their own mycotoxins resulting in various symptoms (and usually go undiagnosed in traditional realms).  A mold Ab test should be considered.  Have you had any reason to believe you are or have been exposed to molds?  (look in water areas - under sinks, etc.)  It's difficult to find as it's not always smelled or seen.  Keep looking!

[Kevin Pho, MD]

The next step can be a neurosurgical evaluation to further look at the neck.

Many of the symptoms seems to be coming from the neck and associated possible nerve compression.  Initial evaluation can be done with a cervical MRI to evaluate the disks as well as for any protrusion.  Electrodiagnostic testing, such as an EMG can be considered to look for possible nerve damage.

If there continues to be symptoms suggestive of rheumatological disease (i.e. joint, muscle pain etc.), another rheumatological opinion can be considered - perferably at a major academic medical center.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[skeetelmore65]

A related discussion, HELP was started.

[dolphinpeople1]

You may have multiple things wrong.  Some of your symptoms sound like hypothyroid.

[KrisKraft]

Have you been tested for Lyme disease?

The symptoms you've listed are very similar to mine , as well as the hundreds of Lyme patients I've interviewed for my documentary. (I'm a marathoner who got Lyme at 42.)

The most universal Lyme symptoms you're listed are:

frequent eye twitching, occ. floaters
neck pain/stiffness  (often a sign of a Babesia coinfection)
chronic inflammation/pain in joints
arm vibrations and tingling
raynauds (really common) cold/numb/painful fingers when exposed to cold/stress
difficulty sleeping
occ. night sweats (often a sign of a Babesia coinfection)
GI tract pain, constipation, diarrhea

I would strongly urge you to see a Lyme experienced physician, which you can find by typing in your location to "Flash Discussions", then "Find a Physician" here:
http://www.lymenet.org/

Enter your symptoms under the "Medical Questions" section, and you can see what other people with similar symptoms think.

Only rarely will a rheumatologist test for Lyme, because they often follow the lead of infamous rheumatologist Dr. Steere, who has has positioned the disease as arthritis-only, rare, easy to treat, and easy to cure. He's written all the medical textbooks on Lyme, and edits most of the Rheumie journals. Typically the

You can see a comprehensive list of symptoms in peer-reviewed journal articles under "Symptoms and Characteristics (peer-reviewed literature)" on my website:
http://www.openeyepictures.com/underourskin/uos_resources.html

Be aware that testing through the commercial labs is notoriously insensitive, with the FDA-approved test kits missing over 50% of positive cases.

In my opinion, IGenex, which specializes in tick-borne diseases, is the only reliable Lyme lab, because they test for multiple Lyme strains, not just the B31 Shelter Island strain, and they report on the most specific Lyme markers, the 31kDa and 34kDA bands. IGenex has recently passed Cal., NY, and CDC quality testing with flying colors. You can download the IGenex testing forms from my website; give these to your MD if you want to use this lab. MDL isn't bad a bad lab either.

Fewer than half the people with Lyme ever see a tick bite or a rash. You have the right to take control of your medical care. Don't let the doctors drag your feet. Every day you have Lyme, the harder it is to get rid of.

KrisKraft
http://www.lymediseasefilm.com/

[Conniekim]

I have seen a neurosurgeon and he put me through PT.  I have also had epidural injections x2.  He stated that since I was only have arm and hand vibrations with hands falling asleep at noc and no actual radiating pain down my arms that I was not a candidate for surgery.  So, once I complete three series of epidural injections and I'm still having all of these different symptoms, what next?  Should I see another neurosurgeon and rheumatologist?

[Belledonna]

Hi
  Sounds like you need ot go to HSS (Hospital for Special Surgery) in New York--look them up on the internet. Also , good webste for Lupus is DXLupus.org---there are really good rheums at HSS. It would be worth your trip and this hospital has many specialists in the areas of your problems. Read about the hospital on the internet and you will see that they could get to the root of the problems. Many people go there for surgeries etc on joints...etc. Good luck.

[Conniekim]

I had test ran in Jan. and they were all normal.  In March my ANA was 1:40 speckled and Sed Rate was 22.  The other lab tests that were ran in May and were negative were: Chem Panel, CBC CK MB, UA, Cyclic Citrullinaed Pep AB, FT4, C-reactive protein, C3 & C4,Serum protein electrophoresis, Cryoglobulins,RNP, Smth, RF, DNA (DS), SCL-70, SS-A, and SS-B.  I realize that it does take time sometimes to receive a diagnosis.  I work at the hospital and know the Rheumy that I am seeing.  The last appointment he told me 5 times that "I looked good!" And that the current "labs should not give me pause to loose sleep over."  I may "look good" on the outside, but I feel horrible on the inside.  Any suggestions would be greatly appreciated.