Earlier today the hospital performed the SSEP and VEP tests ordered from my neurologist. The VEP was a walk in the park but then came the SSEP....
Let me say that prior to the test I read about 15 things that said the test was absolutely painless, and I have an extremely high pain tolerance as it is. I was certainly not expecting what was to come....
First the technician spent 40 minutes trying to stimulate the correct nerve with the "electro stimulator wand of pain" before he realized they would need to use electrodes with needles on them since the regular ones were not conducting through my skin enough.
He inserted the needle electrodes and I think he ended up either having the voltage set too high or put the electrodes in the wrong place because the only muscles it ended up stimulating were one in my heel and another in my ankle, which when pulsed with voltage felt worse than the most excruciating -feels like your tendons are going to snap- charlie horse I have ever had... and the amazing part is the technician left the room to let the computer record the data before I could tell him how much pain I was in! I was stuck like this clenching my teeth and attached to a nest of electrodes for about 30 minutes....
Needless to say I wanted to kill someone by the time the damn test was complete....
That Igenex test better come back this week or there will be hell to pay! All I need is for Mr. Neuro to decide he needs to shock me again in his quest for the holy MS trashcan diagnosis grail...
I can't believe I have had a fever for over a month now and the neuro is still in MS land, no other tests for anything... I guess I will have to see if my LLMD who is also my PCP will start testing for other causes as well since the neuro has not tried to rule out any of the Bacterial, Viral, Fungal and other potential causes of my problems.... Sigh
Frustrated and tired, -Bob Posts: 67 | From New Hampshire | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Bob.
I FEEL your pain!
I must've gone through the same battery of tests, in about the same order. With a neurologist, with MS on his mind and positively no interest in my tick bite with EM rash history.
The zinging of the shocks and the violent muscle contractions are really wild, aren't they? Not something you want to do again soon.
My VEP's were OK, though it hurt my eyes to look at the checkerboard. My upper SSEP's were abnormal and both arms were noted to have "absent cortical responses." I am not sure what that means and if my neuro ever did condescend to talk to me (doubtful), I wouldn't be able to understand him anyway. When I've tried looking it up I only find references to comatose people. :-) I do have bilateral numbness and pain in my forearms. However, I am usually not comatose, unless I forget to take my Provigil.
I submitted myself to these procedures despite thinking I might have Lyme disease because my MRI found 11 brain lesions and my headaches were so severe I seriously imagined I might have a brain tumor. So while I hoped to find out that I had Lyme, I wanted to satisfy myself that nothing else was lurking. I also let them do a spinal tap, which returned like most Lymies - negative for Bb, elevated proteins/pressure.
A week or two after all of this, I got back my CDC positive IGeneX test with six bands - some double and triple positive.
So I could submit to Lyme treatment fully confident that was what was REALLY going on with me.
With a DIFFERENT doctor, mind you. A real LLMD. Not my neurologist, who continues to refuse to believe even my Western Blot.
I hope you'll get your test results back soon and get on a good course of treatment and that your doc is truly Lyme-literate so you can put the fright-mare of "possible MS" behind you and begin getting better!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hi, I feel your pain (sorry) too! I've had more of those tests than I can count. For years they were normal but now they are all abnormal in many ways - funny now the neuro is even concerned, lol.
The llmd said the lyme will affect the nerves and that once we clear the lyme (will that happen?) then the tests should be ok.
Sorry you had to go thru that 'torture', hope you never do again!
Good luck with the results.
Posts: 799 | From home | Registered: Sep 2004
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posted
I also was being pushed by a neuro to do painful and invasive tests, which I declined. He was not happy about it.
Only went to him to document the muscle wasting (obvious to the naked eye) in hopes it will encourage lyme doc to find a more effective treatment. Yes, I know this should not be needed, but his office seems to have a set pattern of treatments, regardless of symptoms or response. Don't tell me to find another doc, I know that and have tried mightily. Am going this great distance because he takes my ins.
Neuros just don't seem to be clued in to lyme. The one I went to got that stuffed frog look when I mentioned lyme. So, we will see what he has to say in his report, which should be here today or tomorrow. Had to pester them to get it, even though appt took place a month ago.
If I thought there was any usefulness in these tests, maybe there would be a reason to undergo them. But they don't seem to diagnose, prognose, or prescribe a treatment. Just give you some itis of the fibers or fasciculations or some darn thing which is not helpful, in my view.
Have you noticed how many medical things are like this? You get an itis of this or that, like gastritis, which is an itis of the stomach. Now what do you know that you didn't know before?
And on top of all that, the neuro charged my ins co for a level 5 appt after only 10 minutes spent with him. And he had the nerve to question my lyme treatment! If that report isn't helpful, maybe I will do something about it.....
Posts: 8430 | From Not available | Registered: Oct 2000
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Isnt it incredible? My neuro has checked off the "extensive visit" tier on my visits which are literally 5 minutes long in which he he redutes any info I have, ignores my symptoms that dont fit with MS, tells me I need a test then pushes me out of the office..... That's at least $350 for the 5 minute EXTENSIVE visit.... that can't be legal!
He is so thoughtful he checked off the tier under that for my visit before I had insurance.... $180 for 5 min in which he told me to come back when I had insurance since the tests were going to cost at least $10,000 and he couldnt do anything without them.... Mind you this was before I suspected it could be lyme, but now I have to stick with the neuro for a couple more weeks since I feel the MRI will be useful to rule out any of the more incidious possibilities like tumors or a sinus mass... so it will make me relax a bit to rule those out. I will never do another SSEP I just did it because when I read the descriptions they all stated it was painless so I figured what the heck why not? I guess the people who write about these procedures have never had one performed on them...
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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I had to laugh about the absent cortical response.... Sounds like the technician did not place the electrode properly on the correct area of your head so it did not pick up or record a reponse. I guess your neuro thought comatose people could walk into his office? Night of the living comatose Lymeys!
I am sorry you had to go through this crap as well, you are right about ruling out things like tumors, I will feel much better just to know the MRI is clear. I am dying to get my Igenex tests back just for the hope that it is lyme and I can relax and take a deep breath then fight those evil spirochetes and show them who's boss!
<- Bruce Lee getting ready to kick some spirochete flagella.
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
As a matter of fact, it isn't legal to charge for an extended visit (level 5) if you only spend 5 or 10 minutes with the doctor. Ins co would be very interested to hear about it, but don't ever try to get any help from a doc who does this after you report him to the ins co. I would only do this to someone who was not treating me for lyme, was uncaring and otherwise a jerk, and could not interfere in my treatment.
Just got the report in the mail. Worthless, as I suspected. He just regurgitates everything I said, does not even make the connection between muscle wasting, increased difficulty in swallowing, voice shot, and neurological causes! I feel sorry for people who have other neuro diseases, if they have to see docs like this.
BTW, the MRI in many lyme patients is clean. The brain fog and other problems are more likely to show up as hypoperfused areas on a SPECT scan. However, some lymies show brain lesions, which tend to resolve with treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
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