Never ending pain

[NPP]

Hi, I'm a 49 y.o. man with many years of chronic pain that every MD I've been to can't diagnose.
In 2000 I had a L5-S1 laminectomy in which I have had pain/burning in my legs every since. It has gotten worse that for the past 3 years I can't work any longer. Past MRI's have only shown "mild disc bulge", and this year it also showed "tiny foci high T1-T2 signal in multiple hemagianomas" and "Diffuse heterogenous bone marrow signal, non specific"

I also have been diagnosed with vitiligo (I am caucasian) and tinnitus.

Over the last year the burning/pain has spread to my forearms, abdomen and right kidney area.  If I do kind of work with my arms, or expose my self to heat, the burning pain intensifies and never goes away, only lessens with ice and pain killers. When I lay down, the pain in the kidney area intensifies greatly and I can't sleep without a lot of pain medication. I have a right kidney cyst that is 12cm in size. Ultrasounds over the years showed that it has grown, and there is conflicting impressions. Some US's state it is a "simple cyst" and others state it is "complex".

***I am in pain 24-7 EXCEPT when I feel I am getting ill, such as a cold/flu. Then it is like a miracle, the pain goes away!!!!  The illness (cold/flu) never fully emerges, it will disappear within 24 hours and I am in full blown pain again, without any illness. All of my doctors do not understand this component, and in fact will disregard it when I bring it up as though I am crazy!

This year my pain also intensified immensely when I was on Doxycycline 100mg BID for over a week, tried it twice and stopped both times mid-course. (My doctor wanted to rule out an infection.)

Pain relief at highest dose of a steriodal pack (1 week pack). While stepping down off steroids, pain came back.

My most recent (abnormal) labs, and there are many, are listed below:

Cardiolipin AB:
ACA IgM  15  (0-11)
ACA IgG   22  (0-23)

Antinuclear AB:
positive AB, pattern:speckled, titer 1:160

ANCA: Results have "uncertain diagnostic significance"
IFA: Positive perinuclear AB

EMG: suggestive of sensory polyneuropathy; possible axonal denervation

TSH:  5.4  (.6-3.30)
K:     5.1  (3.5-5.0)
Absolute Lymphs:  1.4  (1.5-5.0)
Creatinine Kinase:  43  (70-185)
24 hour urine- Copper     13    (15-60)

Urinalysis:
Albumin:  Trace
RBC's:    5  (0-3)
Urobilirubin:  1  (tr-1)

Urine Electrophoresis: Trace Albumin

All subsequent lab tests were negative/normal values
such as: Vit D., VGKC,AB, Striated muscle, PCA type TR-type 2-type1 (YO),
Ganglion Neur AB, CRMP-5IGG, ANNA Types 1,2,3, Sulfatide ABS, Mercury, Lead, Arsenic, Cadmium, Heavy metals, Mag AB Dual Elisa, Lyme, Hepatitis C, Myositis Antibody Panel Plus, GM1 AB Panel, Paraneoplastic ABS,
Myeloma,Workup, Double Standed DNA. ENA Screen, Rheumatoid Factor

I am 6'2", 185 lbs.  I did lose weight quickly last year, without dieting, over the span of a couple of months, about 10 lbs, but now I have leveled off.

Thank you for your time in reviewing my case.
NPP

[NPP]

Thank you so much, that was a direction I was thinking also, but all the doctors (including a rheumatologist) I've been to have not been able to give me any definitive answers.

Good idea to suggest posting my health history on the autoimmune website.

Thanks,
NPP

[AireScottie]

I'm no expert at autoimmune, but this sounds suspiciously like an autoimmune disease which is destroying your peripheral nerves, causing the neuropathy.  That would explain why it goes away when there's something else to fight (of course, I'm slightly prejudiced, because that's what I have).  It looks like you've had bloodwork for some autoimmune diseases.  Have you been to a rheumatologist?  Have you had a lip biopsy for Sjogren's?  You might want to post something like the above over in the autoimmune forum.  You might get lucky and find someone who has had similar test results, and I know there are people there who know all about different kinds of Lyme tests, etc.

[ggreg]

Dear NPP,
Well, you've got three things going on.  I have no idea if they are connected in some way, but I can tell you some stuff that might help you get the right treatment for each.  I know exactly how you feel, I tore up my back in a car wreck and it took me years to get satisfactory treatment.  Back problems are common, but when they get out of hand, the resulting pain is quite profound.  

First, the thoracic spine multiple hemangiomas you stated as showing up on your MRI, that's a blood vessel tumor of the spine, which can ruin the stability of your back, and since you report the abnormality is now showing symptoms in your arms, and that means it needs treatment soon.  An orthopedist's best choice for treatment is to radiate the site, with a good chance of making it stop hurting and improving the condition of your thoracic spine, but sometimes surgical intervention is necessary.  

Two, the lumbosacral laminectomy has failed to help you, and thus you've got a kind of neuropathy in your legs, and the best treatment for "post laminectomy syndrome" is spinal cord stimulation, which is different from TENS (altho that is used too), and that should take away the burning pain in your legs, especially since other therapies have not given you relief.

Third, you have a cyst on your kidney that is painful.  Most of the time docs watch things like that, but I say that since you have pain so bad that it prevents sleep, by golly they need to take that cyst off with surgery.

In the meantime, one of the better medications for nerve pain is Lyrica, which is expensive so you got to have good drug insurance.  It has to be increased in dose a couple times in the first couple months, and the prescribing doc ought to know this, so when it loses effectiveness, he will be willing to up it for you, and soon you reach a plateau of comfort.  You can take it on top of the other stuff you take, and it does cause side effects that quickly go away, but you do wind up with blurred vision and a little imbalance when you walk.

I hope some of this explanation and suggestions will help you.  You need to have a very good orthopedist in your corner, and he can possibly refer you to other physicians for your other stuff.
GG