HELP! LESIONS ON BRAIN MRI! Neuro wants spinal tap I do not!

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springsjean
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   Posted 3/21/2010 9:07 AM (GMT -6)   
Ok eye still blurry and now painful so go for MRI even though neuro very dismissive on first visit. Neuro  leaves me a message on answering machine saying scarring and demylenization and wants me to immediately schedule spinal tap.  I really don't want this.  From what I have read, it is not definitive and very risky.  How do I plead my case?  I know I have lyme, but only 3 bands ever.  Do I approach my insurance company myself and see if they will pay for IV without spinal.  Do I ask infectious disease if he will order IV and see if they pay for without spinal. I know I should be going to LLMD but the ones around here take months to get into and don't take insurance.   I am so sick of tests and prep for tests and scheduling and not reliable results.  However, I am getting so worried about losing the vision in the eye so I know I gotta move quick.  ANY ADVICE WOULD BE GREATLY APPRECIATED.  Has anyone had spinal and had negative results.  I know they are not fun so I don't need details of the spinal.  Thanks so much. 

betterhealth
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Date Joined Mar 2010
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   Posted 3/21/2010 9:28 AM (GMT -6)   
When your MRI shows lesions, your neuro needs to do the spinal to check for MS. I just had a spinal in January and my oligloclinal bands showed MS however I have no lesions on the MRI's of my spine and brain. I will need to do another brain MRI in May to have another look for lesions.

I would suggest getting the spinal to rule out MS. If you do have it, you will want to start treatments for it to help slow the progression.

Please let me know what you decide.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


betterhealth
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   Posted 3/21/2010 10:02 AM (GMT -6)   
Have you seen an opthomologist regarding your eye pain? I had pain and tearing in one eye last August which turned out to be lyme related iritis which they treated with amoxicilin and eye drop steroids. Optic Neuritis is something else that you would want to rule out. You don't want to mess with your vision.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


achievinggrace
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   Posted 3/21/2010 10:25 AM (GMT -6)   
Seems like the risks of a spinal tap out weigh the potential benefits (ruling out MS and other problems). It must be very difficult to hear that there is actual evidence that your brain has been affected. An experienced llmd could better guide you through this awful process. Do find one.

springsjean
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   Posted 3/21/2010 11:45 AM (GMT -6)   
Yes I have seen an opthomogist and they found no inflammation but I failed the visual field tests. That was however before the pain started. Better health do you have lyme or ms or both? Did your spinal confirm lyme?

Traveler
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   Posted 3/21/2010 1:33 PM (GMT -6)   
I agree with Achievinggrace about the good,bad & the ugly of a spinal tap, but each of us has to make our own decisions. I have yet to be convinced (& I do quite a bit of research-type reading) that a spinal will produce any kind of results able to rule out, or to prove Lyme or any other TBI.

With that being said, I have to admit that I no nothing about MS, even though I too, have had a doc try to force that dx on me.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


betterhealth
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Total Posts : 230
   Posted 3/21/2010 1:40 PM (GMT -6)   
I definitely have lyme and my spinal revealed a past serious lyme infection as the antibodies were very high. My spinal also shows positive for MS, however my neurologist thinks this may because my autoimune system is having an exaggerated response from the Lyme. Not sure what to do now... my neuro just had me do more blood work to check again for lyme and all of the associated co-infections. If the bloodwork shows no active infection or co-infection he wants me to do high dose prednisone for a week to try to reset my autoimmune system. He has also recommended doing a week long treatment of IVig immunoglobulin. He says he thinks that I am somewhere between chronic lyme and MS. My sister in-law has MS, so my family is very familiar with the symtoms and treatments. I feel like I am in limbo right now.

I'll keep pressing forward. I just want to be careful not to take any false steps that could worsen my condition.

This forum is a big help in communicating with others facing similar issues.

You definitely need to stay on top of this illness.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


stutterbug
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Date Joined Jul 2007
Total Posts : 478
   Posted 3/21/2010 2:04 PM (GMT -6)   
You know, I had absolutely NO problem with my lumbar puncture. Dont focus on what you have heard.  A lot of the horror stories are from spnal taps done a long time ago. Many places have an x-ray and the doctor can see exactly where it needs to go. It wont be bad.

CajunGrl
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   Posted 3/21/2010 2:14 PM (GMT -6)   
springjean,

I would do the spinal tap if I were you, especially if you have loss of vision. It could be MS and the spinal tap will show if it is. I've had this done before and it is not as scary as you think. I felt no pain at all....just pressure. You cannot stand up for....I think it is an hour after the procedure is done because it can cause I very bad headache.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


springsjean
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   Posted 3/21/2010 4:37 PM (GMT -6)   
Thanks everyone but the question is does lyme cause MS? Can you have both? MS means multiple lesions but unlike lyme they do not know the cause, right? But the treatments are so different. If I have lyme, I am inclined to think it is lyme and not MS unless one can lead to the other. You follow me?

CajunGrl
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   Posted 3/21/2010 5:36 PM (GMT -6)   
You could have both, or just the symptoms of MS, caused by Lyme. It's so hard to tell what's causing what but there is a protocol for people with Lyme and MS. Lyme Disease can also cause lesions on the brain.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


springsjean
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Date Joined Mar 2009
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   Posted 3/21/2010 6:14 PM (GMT -6)   
Thanks so much. i will keep ya posted. Another week of running to drs. and scheduling tests. However, I'm working and walking so I'm not gonna complaint. :)

GWB
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Date Joined Jul 2005
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   Posted 3/21/2010 6:27 PM (GMT -6)   
One advantage of getting the spinal tap is if you do show up positive for lyme disease it will make it harder for your insurance to deny your treatment since it considered to be more of a "traditional" test unlike lyme testing. If it was me, I'd be on the safe side and take the test like CajunGrl suggested.

By the way, yes, if you have Lyme disease, the chances having both are pretty slim. Lyme mimics MS, so it can be confusing to the doctors, especially if they have no clue about Lyme, which most don't unless they're a LLMD.

Gary

Harleyrider
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Date Joined Sep 2008
Total Posts : 283
   Posted 3/21/2010 6:49 PM (GMT -6)   

I too had lesions on MRI scan and vision was not good and the opthamologist did all kinds of tests on my eyes

and could not find a thing wrong. It wasnt until I did IV abx my second round of IV abx my eyes were not painful

or sensitive to light after that. I still get fuzz like vision, and it feels like I have sleepies in my eyes. But found out

that I do have allergies that cause dryness and itching and sometime watery.

But the neuro said that my lesions were caused by Lyme disease. There are other things that a neuro can do to

determine MS without a spinal. If you are willing they are willing to take your insurance money.

 

Good Luck hope everything works out for you.


 


Deejavu
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   Posted 3/21/2010 7:48 PM (GMT -6)   
Hi springsjean and everyone else,
 
In my opinion you are wasting your time, energy and whatever by getting a spinal tap.  The majority of taps do not show anything and will leave you in lots of pain.  It's your money and your body so it's your choice.  If you don't want it, don't get it.
 
Google Lida Mattman and MS and Lyme and you will be fascinated at what you find.  Lyme causes lesions in the brain that go away with proper treatment.   MS, Lupus, Fibro, CFS, etc. are just labels that doctor's give because they do not have the knowledge to identify lyme bacteria as well as lyme symptoms.
 
 
I lost vision in my left eye and it was due to lyme toxins which I didn't know at the time.  I had no other symptoms of lyme disease as well as no knowledge of lyme.   
 
Instead of getting a spinal tap, start on a good detox regime as those toxins can do more damage compared to lyme bacteria, yeah, sounds crazy right?  But it's true.
 
I became friendly with a patient of  Dr. B. (the Dr. B. with the guidelines) by accident and she went totally blind in both eyes because Dr. B. never told her about detoxing and by the time I met her it was too late.   She saw him for years when he was practicing on Long Island and never got better, why?  She didn't know about detoxing.
 
Were you tested by IgeneX?   If so, how long have you been on antibiotics? 
 
I hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


springsjean
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Date Joined Mar 2009
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   Posted 3/21/2010 8:15 PM (GMT -6)   
Very scarey stories. Ugh. How does MS show up in spinal tap or are they just testing for active lyme? Very confusing stuff. Eye is definitely worse when straining to use computer or watch TV. Outside gardening, eye was fine. I am on antibiotics a year but went four years undiagnosed. On zithromax since January and eye went blurry about three weeks after starting zithromax so I'm not totally convinced zithromax hasn't circulated the lyme toxins and the lesions could have been there a while.

GWB
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Date Joined Jul 2005
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   Posted 3/21/2010 8:36 PM (GMT -6)   
Deejavu is 100 percent right. I don't disagree with her at all. You will never get an accurate diagnosis until you see an LLMD. However, the fact that you *might* get a positive test from the spinal tap (it's rare but it does happen) could be helpful in getting your insurance on board for treatments.

While it's true, most LLMD's do not take insurance (very few do) still, your LLMD can give you the papers to send to your insurance for reimbursement if the spinal tap proves to be positive. That would be the ONLY reason I'd get a spinal tap, not to confirm whether or not you have Lyme disease, but just so you might get your insurance on board. Spinal taps are extremely unreliable for testing for Lyme.

The most important thing you can do at this point is to get into an LLMD asap and if you have Lyme disease get immediate treatment. Considering what's going on with your eyes, and in light of what Denise said, this is nothing to mess around with.

Gary

springsjean
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   Posted 3/21/2010 9:14 PM (GMT -6)   
OK so that leads me to how do I find a GOOD LLMD in NJ? Went to first one in Howell and did not like at all. Can anyone recommend one?

Hockey Mom
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Date Joined Feb 2010
Total Posts : 9
   Posted 3/21/2010 11:32 PM (GMT -6)   
Sorry - I can't help you with the NJ piece - but I do want to tell you that I didn't have any pain after my spinal tap. In fact it was a MASSIVE RELIEF to the pain at the top of my head (for about 2 weeks anyway). So don't fear the worst about the test.

Mine showed some white blood cells in the fluid although I've been on antibiotics for 6 months. I have my MRI April 15th.

Like others have said, every test needs to examined for pros and cons. If you are fighting an insurance company like I am, it leaves less options.

Good luck!

Nicky D
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Date Joined Jun 2009
Total Posts : 361
   Posted 3/22/2010 9:58 AM (GMT -6)   
Hi springsjean,

I'm sorry to heat about the brain lesions. The good news (or 'better' news, anyway) is that if they are caused by Lyme, it's possible they will go away with treatment.
I would tempted to do the spinal tap. I have never had one, but I have close family who has (non-Lyme people though), and I know a girl with Lyme who had one as well. Neither one had complications or lots of pain. If you do do it, drinking caffeine beforehand is supposed to help prevent headaches.

I just think it's important to make sure that something else isn't going on as well. I agree with the people who said it can be difficult to rule out Lyme from a spinal tap, but maybe it is possible to rule out MS? And if you get lucky and your spinal tap is positive for Lyme, that will be a HUGE help to you.

Since this is affecting your visions, you don't just want to hope it is just Lyme, because if it is something else, and you don't catch it, you could end up with permanent vision problems.

Good luck!

CajunGrl
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Date Joined Mar 2009
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   Posted 3/22/2010 10:58 AM (GMT -6)   
I also agree that it is important to rule out other things, like Nicky D stated above. If it is MS, you need to get on treatment, ASAP. I had no complications with the spinal tap and I did not hurt at all after.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


GWB
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Date Joined Jul 2005
Total Posts : 571
   Posted 3/22/2010 11:04 AM (GMT -6)   
springsjean said...
OK so that leads me to how do I find a GOOD LLMD in NJ? Went to first one in Howell and did not like at all. Can anyone recommend one?


Email me (click the email icon) and I'll send you some links to find LLMD's in your area.

Gary
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