posted
well a sign of relief for now, mri of head and neck was normal. doctor thinks it could be some kind of systemic infection or neuropathy. she said the dangerous had been ruled out, no ms, no syrinx, no brain tumore
she said she'd seem me in 4 weeks and if i still have problems we'd scan my t spine...i have a eng scheduled for next monday for vertigo. i asked her about western blot they only send it for a western if elisa is positive.
here's kind of an embarrasing question, i forgot to ask her though, if i had some kind of cancer that was in my spine wouldn't if affect my whole spine or could if affect just a certain part? kind of freaked about t-spine as i have a history of smoking....i know, a nurse who smoked, bad, bad, but one step at a time.
i still think i'm going to follow up on the lyme doc in ct and also i'm going to ask my pcp for an mri of my knee as i continue to have pain going up the stairs. i told neurologist this and she said arthiritis but my sed rate was normal.
she also felt my lymph nodes under my right arm and asked if i've had a mammogram recently. i get my next one on dec. 1st day after i turn 40 and have had one every three years since 30.
also my reflexes are hyperactive...i think they always have been but don't really remember, is that bad? again, forgot to ask i was just so excited when she said my mri was normal i wanted to run before she changed her mind....lol
karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
| IP: Logged |
posted
Thank God your MRIs were clean! I have PM'd you.
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Ok, a couple of things, hyper active reflex is a common finding with Lyme.
While there are a number of possible causes which also have to be ruled out, you might want to investigate a brain profussion SPECT (single photon emmission computed tomography) done. The are inexpensive and can show a lot. The purpose of this would be to see if you can observe a low blood flow on one side of the brain. If this occurs, there are a number of infectious and physical cuases but you will at least have a direction to look at. Alternatively you might want also look at a brain MRA with focal flow rate measurement, this can show a similar thing to spect but does not give global picture. Usually it is done on both sides of the brain while you are sitting in the MRI machine for some other stidies.
These tests are not specific to Lyme but are another piece of the puzzle that can send the investigation the correct direction.
Still, from a lyme perspective, the knee and the hyper reflex sound familiar. Quite often everything else can look normal.
You sound freaked out by the possible findings of the tests and this may make the symtoms appear worse. Be careful on this as you may soon find that the test result become depressing in the there is no glow in the dark type findings, then the realization will set in that the problem is not so easy to find despite the progressive symtoms. This is the norm rather then the exception for neurological disease.
Also the cancer in the spine thing I don't think is credible (but anything is always possible). The combination of single sided body weakness and the facial numbness are not supportive of a solitary spinal lession being the cause and in addition, the cranial nerves are seen on the MRI and where clear.
Asside fronm brain tumor, neurological symptoms can sometimes be caused by paraneoplastic syndrome, Ie a distant cancer that secretes powerful enzymes and proteins that cause neuro symptoms. Lung cnacers apparently have a higher rate of this syndrome associaed with it. This possibility is rare and always quite low on the list, still a PET scan can likely rule this one out if you are so inclined to do one.
In all cases of the above, you will og course have to consult your Dr. as the info above is only intended to help provide a basis for futher research and discussion with your Dr's.
Hope some of this helps.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Karen,
Congrats on the negative mri. That is alway good news.
I really suggest you get a western blot done at a reliable lab like Igenix or MDL. I had Lyme in my system for 17 years before I was diagnosed. Test after test for every symptom that arose was negative.
My Elisa kept being negative. Because the longer you have Lyme, the fewer antibodies your body actually a makes to it. It makes a positive Elisa even harder to find.
A negative Elisa does not mean no Lyme. It is of course your choice, but it seems to me a lot of money is being spent on a variety of tests.
If you really suspect Lyme, than follow the route that will tell you whether you have it or not. The tests your doctor is running will never tell you if you have Lyme or not. It's your choice, but that's my opinion.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
Karen, what are your symptoms? You sound like you have some of the questions I have!
I have worried about spinal cancer myself. Actually I still worry about the paraneoplastic syndrome that David mentioned because I know that my neuro symptoms could be caused by a cancer that hasn't been found.
Just wondering since I have one-sided symptoms, myclonic jerking, etc. Did you have a spine MRI, too??
Posts: 331 | From virginia | Registered: Nov 2005
| IP: Logged |
posted
vachik, my symptoms are so transient they are hard to describe. i started with vertigo and eye problems, then the vertigo went away as did the eye problems, then i felt like i was walking to one side.
then after five days on zpac, my whole body jerked, burned, my face when numb and my feet were vibrating. that also went away.
then i reached up for something at work and i felt like my arm went flaccid. that went away as well. when i wake up in the morning my right arm feels very light, no heavy but light.
i have a cat scan, blood work, cardiac workup, mri of head and neck.....everything normal. i will now go for a EGD, something to do with vesitublar disorders. my symptoms remain transient. i really dont' feel like i have some kind of mestatic disease as it only affects one side also i don't have any problems breathing or any heart like problems. i think as dave mentioned "paraneoplastic disease" i really quite rare and i think blood work, especially electrolyets would probably show some discrepeancies if this was the case. although i'm not sure of this, as i'm only a nurse, i think calcium and cbc, h and h, etc. would kind of give a heads up to some kind of systemic neoplastic disease.
hope this helps, i'm not sure of the above but just using kind of gut instinct.
karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
| IP: Logged |
posted
Congratulations on the normal mri. I know that was a relief.
You said you think you're still going to follow up on the LLMD in CT. Do you have an appt yet?
You sound as if you're in doubt about seeing the Lyme Dr.
Of course it's your decision to make, but if I were in your place, I would postpone all tests except Western Blot by IGeneX until I was evaluated by the LLMD.
He/she will consider all possible diagnoses & only run the tests that are needed.
From all you've said, it seems likely that you could have Lyme and/or other Tick-Borne Diseases. You need to be evaluated as soon as possible by someone who treats TBDs almost exclusively.
If you don't have that appt yet, I recommend you call ASAP.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Have you read in the Newbies section or on the ILADS website (www.ilads.org) that the ELISA has about a 65% accuracy rate and there is only a certain window of opportunity when it will work?
My ELISA was negative even when I was in full-blown Lyme symptoms. My Western Blot was clearly positive.
Painful knees were among my first symptoms - which I wrote off to old dancing class injuries but have since found out to be a common Lyme symptom.
I have much of what you've described - burning, tingling, muscle weakness, etc., except my symptoms were not transient, they just got worse and worse. Neuropathy is my worst problem and it kept spreading throughout my body the longer I went misdiagnosed.
I'm with the group that says go for the IGeneX Western Blot.
Take care and keep us posted, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
A systemic infection such as lyme IS dangerous. Im glad that yoru MRI of your head and neck was normal. Iw ent through all that testing. Even my EMG for chronic vertigo showed....
I wasn't having vertigo ...
It ended up being lyme. I hope you do see the LLMD.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Nurse.
You said:
quote:she said she'd seem me in 4 weeks and if i still have problems we'd scan my t spine...i have a eng scheduled for next monday for vertigo. i asked her about western blot they only send it for a western if elisa is positive.
First, congratulations on your clear MRI. Now, here's what you need to do.
Call your doctor up and tell her you want a western blot ANYWAY. Because you know the ELISA misses almost half of all chronic lyme cases and is worthless as a diagnostic tool. Print off "The Basics" from the ILADS site.
Tell her "Humor me!"
Tell her, "It's my money and my health."
Why is it you are willing to continue getting every test under the sun OTHER than one simple western blot?
You sound way more willing to believe you might have any number of rare disorders over plain ole lyme disease.
You MUST assert yourself enough to ask for a western blot from IGeneX. Call them and get the kit mailed to you. Tests 188 and 189. Then march into your doctor's office and politely explain you'd like them to sign off on the authorization sheet.
We've posted numerous statistics on the failure rate of the ELISA for you. Print some and take them with you. Don't expect your doctor to already know this. She doesn't.
Why won't you do this very simple blood test? From one vial of blood, you will likely have more information than all the tests you've had so far put together.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
I would advise you too seek a lyme neuro.. there is the best one right there in connecticut...let me know if you need his number...it sound as if you may need a spect scan...its an important test as it is highly accurate...dont be scared of it...it is a test of function of the brain..i hope your neuro is an llmd?if not they are NOT trained to treat or diagnose lyme disease...trust me ive been there...hope the best... eric
Posts: 593 | From long island ny | Registered: Apr 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic