Post-Viral Neuralgia - the purpose of getting MRI's?

[traffictype]

I have Interstitial Cystitis and Post Viral Neuralgia from an infection I got in a friend's hot tub 18 months ago. I had gotten round itchy skin sores from the same tub six months prior (the only other time I was in it), but never saw a doctor for those. I'm an idiot.

An infectious disease doctor found high ANA levels, West Nile (probably got in the 90's in FL), and Herpes in my blood earlier this year. A Spinal Tap done by my neurologist showed no active infections.  

Next the ID doctor suggested MRI's of the Cervical, Thoracic, and Lumbar Spine. I put those procedures off for the last five months because they're expensive, but I'm now giving up and getting them done because the neuralgia is ridiculous. I get stabbed everywhere, anywhere, all the time, head to toe. Tingling, twitching, burning, I get it all.

My insurance is good - I'll only pay 10 %, but that's still over $600 as they want them with and without contrast.

My problem now is how non-communicative my doctors are. They are busy, quiet, or otherwise just not seeing the point in EXPLAINING why they need to cost me all this money.  Could someone out there tell me what the purpose of these MRI's is? My basic understanding is to 'look for inflammation.'  But what could be done then? What treatments are there besides the Lyrica that's affecting my ability to perform my live radio job?

I don't mind doing the MRI's or paying for them, but it would be easier if I could understand their purpose. And maybe get an idea on whether or not I'm going to have this for the rest of my life. I'm 37.

Thanks!

[CJLead]

Did you ever find out what was causing all the burning and pain? I ask because I experience what you are talking about but it goes from head to toe and makes it to where I cannot concentrate at all. I become irritable and my system wants to shut down. I did the spinal tap, Multiple MRIs, Ct scan, Xrays, blood work, you name it I have done it and I have been to three Neurologists, a sports medicine doctor, a rheumotologist, physiatrists and a few pain management doctors as well. I underwent two steroidal epidural injections where the doctor used omnipaque (iodine based contrast which I am allergic to and he knew this) in both procedures and I experienced a reaction to both and after I consistently and progressively became worse and have lost so much of my life that I can never get back. I am 37 and I have four children, before those procedures I was running 5 miles a day three times a week and worked out 5 times a week as well as maintained hiking activities and other things just to stay healthy. After these procedures I was left with a body that is not able to do much. Can ANYONE expain this at all, what is it that I have??? They say that I have developed a Centralized pain disorder that can happen after a trauma to the body, well those epidurals were definitely a trauma and I continue to suffer daily. I too have IC and was doing great with it but after those procedures I began to deteriorate and developed shingles from the continued and escalated stress this caused on my life. It is awful to live like this. I want my life back. Any suggestions on this at all, ANYONE???
Thanks.

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I never stopped in to report back. The MRI's in July didn't show any inflammation or nerve pinch. My hands have been falling asleep a lot so I also did an EMG on them. It showed Carpal Tunnel. I've found other IC sufferers with tingling in the hands and fingers. But I guess it's all a mystery how these things are connected.  My urologist said the IC bladder releases "Substance P" into the nerves, so there's a possible explanation. Thanks everyone!

[sadie1246]

you know I have had several test in my life I don't like cat scans as they give out a tremendous amount of radiation and an ultra sound doesn't obtain much info.  An MRI is the best I think because they can find almost anything that is there.  A lump, to the swelling of an organ to stones and twisted intestines so I wouldn't kick and go for it.  I have to have one next week.  

Your life is to important more so than a computer.  Don't let it go or you will end up like me.  By the way I get cold sores and I did not test positive for herpes.  I get them when I am stressed or ill.  

[traffictype]

Interesting. I've read posts by 2 or 3 people online who have IC and also Lyme Disease or Shingles. Most of the ICer's don't seem to have Neuralgia, though. Seems they usually end up with Fibromyalgia. My doctors still can't figure out how I could have gotten IC so fast from one single infection, after never having a single bladder problem my entire life. I keep telling them it was that hot tub! I should know! I was there when it happened! :) Darn tub gave me itchy round skin sores six months prior, so naturally it was suspect even without the other people getting eye/ear infections from the same night.

[patsy10]

Lyme testing is unreliable at best.  It is not uncommon to test negative and have it.  Lyme causes IC.  In fact, this is the probable cause of IC for the for the girl I mentioned above.

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The nerve pains started in the middle of my back, on either side of my spine, during the 3rd week after exposure to the infection and the first UTI symptoms. I learned quickly the pain was directly related to acids in food.

Changing my diet didn't control it, though. It got into the insides of my knees, then lower legs on either side, then my feet and toes, then the backs of my arms above the elbow, then below the elbow, then eventually into my wrists and hands. Then my fingers and my face. Various spots on top of my head, up my nose, you name it. The stabs are like a pin or knife is jabbing into me for about 20 seconds.

Ongoing muscle twitching started up in about the 8th-9th month. Large parts of my body would twitch all day and all night. And my fingers started tingling. The twitching, burning, and finger tingling always was worse when I ate something to upset my bladder, or if I put a hot pad on my bladder.

The twitching went on for about 8 weeks nonstop, then eased up and the tingling in my extremities got worse. My fingers and hands fall asleep all the time now. It's really maddening, but maybe it means I'm starting to heal?  

So, with the diagnosis of 'post hepatic neuralgia' (which I think is accurate), nothing should show up on the MRI's?

Thanks!

[DrNoopurMD]

Hi,

Could you please elaborate on your symptoms?
From what I can understand the doctor is looking for a differential diagnosis for your condition. A CT scan and MRI of neck is helpful in diagnosing any disc herniations, nerve compressions, tumors, bony spurs etc.
I suggest since this concerns you please try and talk to your doctor about the relevance of these procedures. You also have the option of seeking a second opinion.

[traffictype]

It's hard to get disability for IC - there just isn't enough awareness about the disease, or compassion. Your friend is lucky! I haven't even tried to get disability, but I bet it would require me to be unable to work or leave the house for a long time period.  I'm controlling it instead, with a careful diet and instills (medicine directly into bladder via catheter-yikes). And I'm trying to keep a positive attitude... believing there will be an end to all this eventually! Geez it was just one infection!

Bulls-eye rash - I bet you did get Lyme Disease!! I think you can get a blood test to be sure.  I've done the brain MRI's already - primary care doctor did that. This time it's the spine. Since my neurologist says "an infection must have gotten into the dorsal gangleon of your spine" then MAYBE something will show up. I doubt it, though. And I'm kind of getting used to the fact there can be a LOT OF PAIN and absolutely no real diagnosis when it comes to this sort of thing.

I sure hope a doctor pops in and explains why I need the three spinal MRI's with and without contrast :) Or I can ask my Infectious Disease doctor again.  

Thanks everybody!

[patsy10]

I forgot to say, in my case the MRI's were done to look for MS

[patsy10]

No. I don't have IC (thank goodness) but I know someone who does.  She's on disability for it.   I have the muscle and nerve pain, burning, twitching and all that stuff though.  Yes, it is very scary.  I've gotten used to it since I've had it for 3 years now.

The hot tub story is very gross.  I never go in hot tubs for that very reason.  

I really think the neuro wants to see if you have something going on in your brain that is causing your problems.

The only  diagnosis I have gotten is possible lyme disease as I had the classic bullseye rash.  I have improved considerably from taking antibiotics.

[traffictype]

Do you have Interstitial Cystitis?

I know it was the hot tub because I started having to pee every 5 minutes 36 hours later. It was my first time UTI and I spent about 6 weeks unable to sleep at all from what I believe were sores on my urethra. I had to be sitting on a towel all the time. Really strong antibiotics were doing nothing.

A friend who was also in the tub had an eye infection 2 days later that looked weird to his doctors, like Eye Herpes maybe. Anyway, mine started with urethral spasms, then food sensitivity, sharp back pains that I now know were nerve pains, then leg pains, then upper arm pains, then lower arm pains, etc to hell. I'm living off breads and veggies - everything flares me.

The ID doctor wanted the Spinal Tap and the MRI's. The Spinal Tap was much much cheaper so I did that first. She seemed disappointed. On my follow up visit she said all she can think to do is the MRI's.

This is going to cost me as much as a brand new computer. I wish somebody would explain some kind of benefit to getting MRI's in my situation.  Maybe I should bag the idea and keep withstanding the neuralgia. But it gets SO BAD and scary, ya know?

Especially the ones in the face and head... and my fingers won't let up.  I do feel like I'm going through stages... like there was the twitching stage, the tingling hands stage.... but where am I going? Straight down or on the way to healing?

Thanks everybody!

[patsy10]

I would guess that the doctor is looking for other causes for your symptoms such as a neurologic disorder.   Inflammation would show up on a spinal tap.  I would ask the doctor straight up "what are you looking for?"  I don't understand why they did a spinal tap before an MRI.  Usually the MRI is done first then depending on the results a spinal tap may be ordered.  The ANA test is a test for inflammation that may indicate an autoimmune disorder..It's a non-specific test but if it's elevated usually other autoimmune testing is done.  The blood tests that showed herpes and  West Nile sound like they were past infections according to what you wrote.  A large percentage of the population would show a positive test for herpes.  Anyone who has had a cold sore would test positive.  How do you know the hot tub infection is causing your problems?  I'm not a doctor but I have all the symptoms that you describe except for the sores you had.  After numerous tests (all negative)  I have no true diagnosis.