UNDIAGNOSED SYMPTOMS FOR 2 YEARS NOW

[NEED_HELP_IN_WI]

Symptoms: Headache-trigger is TIME, worse as day goes on; Myofacial Pain, Neck Pain, TMJ symptoms, Tingling mostly in face, but also recently other parts of body like hands and feet; peripheral neuropathy in both arms; loss of muscle tone since this started; partial facial paralysis; only 70% of taste and smell; cystic acne that has progressively moved down my back and chest -a little bit of sweets or fats seem to make it worse. (never had that before this- kind of embarassing), palpitations in head, face, neck, upper back, heart, and lower back; cold sweats if I drink alcohol; episodes of outer body experience if I drink alcohol- I stand straight but it feels like my body is tilted 45 degrees to the right; recently it feels like some of my bones hurt-bottom of right side of foot when I wake up;

Tests: EMG-diagnosis peripheral neuropathy-no MS; Brain MRI w/wo-normal; neck mri: cervical stenosis: severe in some spots, but likely a secondary symptom and not a cause; Gluten test: negative; IGG/IGM Lyme Disease test-negative; Western Blot Lyme Disease test-negative; all rheumatological bloodwork-negative; precautionary HIV test-negative and they don't think I have this; no STD-never even had an STD; diabetic test-negative; colonoscopy and endoscopy-checking for inflammation, but none, incidental finding of 16 polyps only one precancerous on appendix which was removed;  MRI of abdomen is normal

Treatments: TMJ Physical Therapy; Neck PT; 21 Excercises 4 times a day and ice down face head and neck 4 times a day; quit alcohol for 6 months now; chiropractor since summer; accupuncture since summer; Meds are Diclofenac which really does nothing; on Bactrim now since beginning of the year and the numbness, tingling, and headaches are improved but not gone.

In a nutshell this started with a slight headache and stiff neck, which 4 months later turned into severe headache, 4 months after that the top of mouth hurt, then lower mouth, 3 months later then whole face and facial tingling, 3 months later the upper back, 3 months later the mid back, 3 months later the lower back. The acne seems to follow after where the pain is. All the symptoms get worse as the day goes on.

The gastro is to see if I have inflammation that might trigger this-haven't found anything yet. The neuromuscular is the one who is kind of overseeing everything. She thinks my autoimmune is attacking neurological system or vice versa, but is baffled why my atypical Anca went up when I was on prednisone.

[Jcrow28]

Could be systemic scleroderma, mitral valve prolapse, pulmonary hypertension or hyperadrenalism,  

[bamafan1983]

It could be occipital nueralgia. You can have simple nerve test done to see.

[PickledGinger]

Oh! Have you tried e-stim (electrical stimulation) for the pain?

Also, low-dose ssris or tricyclic antidepressants can help with nerve pain (by replenishing the neurochemically the pain burns through, I think).

And have they tested you for vitamins B12 and D?

[PickledGinger]

Weird. Sounds a little like RSD, but not. Or shingles,  but not.

Have you had a second opinion from another neurologist? Primary or not, the stenosis could cause a lot of the problems. If they could do anything for that .. it'd help, at least.

Also, some labs are much better than others with Lyme tests. And various criteria are used. (A lot of labs and doctors use the CDC epidemiological tracking criteria, which the CDC itself says should not be used diagnostically. The lab developed those guidelines to track Lyme ages ago; it knows more about it now, and would pick different tracking criteria ... but it has decades of data using the old criteria, so it's stuck.)

Ask to see the full lab report from that Western blot, see which bands were positive. (You can find more info at LyndNet.org)

You might discuss adding some of the antiinflammatory foods to your diet. Fish oil, ginger, turmeric, cayenne. Surprisingly effective in some recent studies. And cheap, easy, safe.

You might ask for a trial run of antibiotics, in case it's Lyme or some other infection. (Some people don't test positive for Lyme until they've had antibiotics. Weird, huh?) You might ask to be tested for some of the other tick-borne illnesses.

Good luck finding it, whatever it is!

(I had Lyme ... with the balance problem, facial paralysis, spatial ataxia, aphasia, rashes, itching, hair loss, fatigue, weajness, brain fog, and lots more, most of which went away after ridiculous amounts of antibiotics. I'd have done better if it hadn't taken 3 years to diagnose, so I know how frustrated.you must be.)