What to Expect?

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Mischa252
Regular Member


Date Joined Mar 2014
Total Posts : 101
   Posted 4/1/2015 12:46 PM (GMT -6)   
Hi,

I posted back at the end of the year about some scary symptoms I was having. Mostly with extreme dizziness and leg weakness, to the point of paralysis. I was diagnosed with lyme (cdc positive) last March and have been treating aggressively for the past year. My major symptoms have always been neurological. Heaviness in legs, and a floaty/vertigo like feeling. I've had some very good months in treatment, and some very bad ones. After that "flare" at the end of the year, I went to the ER, cleared of anything "major." Went to my PCP and she ordered MRIs for brain, lumbar and thoracic. Just to get those approved thru my insurance was really hard with a lyme diagnosis.

It eventually passed, and I went on to have the best two months ever in my treatment. No symptoms at all. I was loving life. And around 3 weeks ago, my heart sunk when I got that feeling again in my legs. And it's been with me every since. It seems to have worsened, to the point I wasn't sure how long I can continue to walk without a wheelchair. Yesterday, I felt some subtle improvements. Needless to say, this is very scary and I'm dealing with a lot of anxiety and depression as well.

All of my MRIs were done in January. My brain and thoracic were fine. My lumbar showed "At L3-4, there is peripheral annular tearing in the central posterior. At L4-5, there is minimal disc bulging, without focal protrusion and at L5-S1, there is a small, shallow right paramedian disc protrusion. There are mild facet degenerative changes"

First let me emphasize, Im not looking for a diagnosis from stating my MRI results, I know this isn't the forum for spinal issues, just wanted to put that out there I had some 'moderate" issues with my back. Ive read that some of these issues can cause some of these symptoms, so I'm hoping that maybe that is the answer (although I know that wont be easy either).

My lyme doctor, also an osteopath really didn't consider those results indicative of the symptoms I'm having because it's only "moderate." And basically poo poo'd them.


So because all of my lyme symptoms are neurological in nature, I decided it's time to see a neuro, which is tomorrow. I still feel that deep in my heart, MS is probable, even with the clear MRIs. My next recourse is if nothing is uncovered with the neuro....next would be to see an orthopedist for my back.

My questions are this:

1. What is the probability that I would have to get more MRIs? They were just done two months ago. Is it typical to get them done repeatedly so soon?
2. If MS is still a probability, what other tests than the MRIs would be ordered?
3. The spinal tap, how bad is it? I've heard horror stories about people being worse off after. Has anyone had that experience? I will do everything I have to, but that one is scary.
4. During a first neuro visit, does the doctor typically do a neurological assessment in the office? YOu have to put on a gown, etc. walk on your toes, etc?
5. Lastly, I know with a lyme diagnosis it muddies the water a bit. Has anyone here had both the MS and Lyme diagnosis at once?

Thanks all, healing vibes to everyone.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 4/1/2015 5:23 PM (GMT -6)   
Hi Mischa,

It is really up to your doctor. Lesions can form nearly over-night. I once had MRIs just a few weeks apart and I had new lesions. If your doctor sees symptoms consistent with MS, then a new set of MRIs will be ordered.

In addition to MRIs, common tests for determining MS might be blood work, evoked potentials (extremities, vision and hearing), lumbar puncture and a neurological exam.

For me, the spinal tap was a bit uncomfortable. It was without lasting issues. It was very helpful diagnostically for me.

Most neurologists won't ask you to gown up. I did once to determine the extent of numbness on my torso. You will do a whole battery of tests. Walking on toes Etc. Some will be reflex in nature. Others will be tasks you are asked to do.

Lyme muddies the water a great deal. Many neurologists won't consider MS due to the fact that you have Lyme disease. MS is a diagnosis of exclusion. If there is another medical reason for your symptoms then MS is typically ruled out.

I have only known people who were diagnosed with MS who later found out it was Lyme. I don't know anyone who was diagnosed with Lyme who later found out it was MS. For me, Lyme, meningitis, HIV, brain cancer/tumor were all considered. One thing after another was ruled out until only MS was left. The acid test was that I have responded to MS treatments.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 4/1/2015 8:21 PM (GMT -6)   
Mischa,

Ditto on everything Gretchen said. All I will add is that the spinal tap (aka lumbar procedure) was no where near as scary as others had made it out to be. I even had an intern do mine and after a few minutes of him poking around near my spine a veteran doctor took over and it was completed in about a minute. Even when the intern was poking around, it was just more uncomfortable than painful. Sometimes my legs would jump when he poked certain areas (and that definitely made me nervous) but it really wasn't painful.

You could ask that only an experienced doctor do the spinal tap. Honestly, I think it could be an out-patient procedure. Maybe it is for some--I was already in the hospital when they did mine, but I felt no different afterwards.

Best of luck,
Frank

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 4/2/2015 7:02 AM (GMT -6)   
Thanks Frank. That reminded me of one more thing. I have heard that real time fluoroscopy can help. It's like ultrasound. They can find a space between spinal vertebra much easier.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Mischa252
Regular Member


Date Joined Mar 2014
Total Posts : 101
   Posted 4/2/2015 9:50 AM (GMT -6)   
Thanks so much guys for your responses. They helped a lot. I'm getting ready to go for my appointment. Scared :(

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 4/3/2015 6:20 AM (GMT -6)   
What did the neurologist say? How was your exam??
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Mischa252
Regular Member


Date Joined Mar 2014
Total Posts : 101
   Posted 4/3/2015 8:23 AM (GMT -6)   
Thanks for checking up on me Gretchen, to put it mildly....it was a disaster. It was the WORST experience I EVER had with a doctor. And I've dealt with a lot in my 45 years.

To sum it up, she basically chastised me for believing I have chronic lyme, despite providing her with my proof. We actually argued about it. Her bedside manner aside, I felt like I was on trial for coming to a neurologist with a chronic Lyme diagnosis.

She said "if you have Lyme, then why are you here?" I said that ALL of my symptoms are neurological in nature, and when I got to the point of using a cane, and potentially a wheelchair, I felt it was necessary for another opinion. If you are unwilling to accept that, I"ll be on my way gladly."

She said IF it WAS MS, after my last "flare" in December and the MRI I had during that flare, it would have showed a lesion. So she felt it wasn't MS because of that, AND, IF she would request another MRI she would have nothing to compare it to, because the first MRI was clear. She also said that there is no way my insurance company would approve another MRI with a lyme diagnosis.

I just wanted to get a neurological exam and get the hell out of there, just so see if there was anything "off" but at the point, her ability to remain objective was comprised, and I should have left. After the "exam" she said I "passed."

She then went on to diagnosis me with migraines and depression, because this is clearly connected to my inability to walk. (sarcasm). When I said that I had some lumbar issues that could be? the reason for the leg weakness, she said that doesn't make sense, then why would you have the dizziness??" I retorted with the same rational, that IF I do have depression and migraines, why cant I walk??"

So, she wrote me a script for anti depressants, told me to up my metoprolol (for high blood pressure), keep a log of migraines (which I never once had OR said I had) and come back in a month and then "Maybe" she would do a lumbar puncture for lyme (PCR) test.

Despite how disturbing this was, it was good. I knew I could be in store for some opposition to a Lyme diagnosis, but I certainly didn't expect hostility. It actually strengthened my resolve to keep advocating for my health. It may very well be Lyme, and I'll just have to accept that - it's just that the inability to walk I am not willing to brush under the rug until I explore other illnesses, like you said, MS is a disease of exclusion, and sometimes so is Lyme.

I think my next option is to see a chiropractor, and have him look at my lumbar MRI, and I'm sure he'll do some xrays as well. At least I might get some temporary relief with him.

Lastly, someone at work has MS, who was outraged at my experience yesterday, called her neuro today to see is he would be willing to consult with a lyme patient and he said he has lyme patients, which is encouraging. So when I get the energy to try again with a neuro, I'll probably go see him.

For now, I'm just exhausted physically and mentally and I'm going to try to enjoy my weekend for once, even if it's on the couch. lol

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 4/3/2015 12:41 PM (GMT -6)   
Sorry to hear about your experience. Most neurologists look at Lyme Disease as infectious disease specialists did AIDS in the late 80's. If you wernt gay and Haitian you didnt fit the bill. In other words, they feel its somewhat highly unlikely to have Lyme if you can not confirm you have been bitten by a tick, if you live in an area that is not prone to deer ticks or the disease itself and or have not experienced the less than typical bulls eye rash.

Ive seen several neurologists and an infectious disease specialist. The infectious disease specialist completely wrote Lyme off based off of his own intuition even though i had a false positive ELISA and a negative (Canadian) western blot - The Western Blot that they perform in Canada only screens for 2 types of bacteria that can cause Lyme. So ive gone ahead and sent blood samples to IGENEX and are awaiting the results. My neurologist has already made a diagnosis of MS and doesnt believe it is lyme either but is willing to entertain the idea pending the results from IGENEX. Some of my symptoms are atypical of MS thus prompting me to explore other avenues.

Dont give up.

Post Edited (Chris_1234) : 4/3/2015 12:46:18 PM (GMT-6)


Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 4/3/2015 3:51 PM (GMT -6)   
Mischa,

Please consider writing a review on that particular neurologist. This can usually be done by simply Googling the doctor's name. Typically there will be a site that will allow you to submit a review.

I ask this not so you can vent, but to forewarn other neurological patients. Personally, I would never want to be seen by this doctor and would appreciate any heads up I could find on them.

Thanks,
Frank

Mischa252
Regular Member


Date Joined Mar 2014
Total Posts : 101
   Posted 4/6/2015 11:46 AM (GMT -6)   
Frank, I did this when I got home that night. I couldn't sleep until I did. lol

Thanks for your input Chris, can I ask - what were the symptoms you have/had that were typical of MS?
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