The story of a lucky guy who's got MS

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The story of a lucky guy who's got MS

Postby MarkLavelle » Sat Dec 24, 2011 7:55 pm

That's me - a lucky guy who just happens to have MS. I've got a feeling I'll be around a while, so I might as well introduce myself....

How can I feel lucky? I'm still here, and still able to do all the things I really care about doing. I'm posting now because I've pretty much accepted that I have MS (or something very much like it), and I figure I should get in touch with folks who have some experience dealing with it.

I've already survived late-stage lung cancer (in 1996, at age 40) and a metastasis to the brain (1998), so I've felt pretty lucky for a while now. Since then things had been going well, with only a brief episode of back problems from a herniated L5 disc 5 years ago.

Then on Thanksgiving Day 2009 I noticed that my feet went numb/tingly several times, and within a few days it became continuous. I assumed my disc was the cause, and went back to my physiatrist. By the 2nd time I saw him I also had some sciatica, and we both just assumed it was all disc-related. So I had a cortisone shot and started physical therapy. But after the paresthesia spread to my hands (Feb. 2010), he sent me to a neurologist - it didn’t make sense for a lumbar disc to affect my hands.

After lots of blood work, nerve conduction tests, a brain scan and a spinal tap (and a visit to a neuro-motor specialist who basically said "call me when you have more symptoms"!), my neuro told me it "looks like MS" in Sept. 2010. A month later, a neuro doc at the Stanford MS clinic said no way! I don't think he used the term at the time, but he wasn't willing to go beyond calling it CIS, and was even reluctant about that. He (and my back doc) thought it was more likely delayed damage from my 1990s chemo and radiation. At the time, my scans had only shown a single area of demyelination, in the cervical spine.

I kept getting treated for the back, but the symptoms inexplicably got worse even after a year of cortisone shots & P.T. By Nov. 2010 my legs were going dead numb after only a few minutes of walking or standing. Just before Christmas I had another Lumbar MRI, which revealed a cyst in my spine at L4-L5. After a failed attempt at collapsing the cyst via needle aspiration in Feb. 2011, the back doc gave up (i.e., recommended surgery :) ).

Also in Feb. 2011, my neuro ordered "3T" (high resolution) scans of my brain and c-spine. At my next appointment he unequivocally called it MS (new lesion in brain = multiple), but also ordered carotid & cardiac ultrasound scans, which apparently showed nothing unusual. In May I was finally able to get into the Stanford clinic to see my 2nd opinion doc a 2nd time, and he confirmed the diagnosis (and I've decided to stick with the Stanford MS clinic for treatment, partly just because they're already familiar with my brain from 1998 - my surgeon is still there!).

In the mean time, I'd been trying to get my back surgery ASAP and had everything in place for surgery at UCSF at the end of June. Unfortunately, at the very end of May everything changed - I started having visual hallucinations! At first it was just weird minor distortions in my peripheral vision, but by the time I saw my primary at the end of the week (for pre-op approval), the hallucinations were nearly continuous. I told him about the MS dx and he immediately suspected optic neuritis (ON) and referred me to an ophthalmologist. The next Tuesday on the way to work I was sure I saw cars passing me on the right when I was in the right lane! I took myself off the road that afternoon, and at an eye appointment a week later an ophthalmologist confirmed that my problem was neurological (i.e., not in the eye itself), and my right field vision (both eyes) was effectively zero (hemianopia).

Back at Stanford, an MRI indicated the vision problem was a *stroke*, and all concerned thought it best to find out about the cause of the stroke before surgery. After a little more blood work and a brain “MRA” (MRI angiogram), the stroke doc called it "small vessel atherosclerosis" and recommended going on a statin (and cleared me for back surgery).

Since the surgery in July (and subsequent PT), I've been thrilled about my back. I've still got a lot of strengthening to do, but sciatica and numb legs are a thing of the past. The miraculous part is that by surgery time (late July) my vision had already improved quite a bit (IMO). I didn’t trust my perception of it, but in Sept. the eye doc said my eyes tested normal! It's hard to describe how good it felt to hear that. For sure, I did the driving on the way home! ;)

So let's recap: no more back trouble, no stroke symptoms, and MS. I'll take it!

I'm probably about as freaked out as anyone so soon after being diagnosed with MS, but I also know that my current symptoms are pretty mild. Paresthesia in all limbs 24/7 is impossible to ignore, but I wouldn't (usually) call it painful or particularly limiting (not that I need an extra dose of clumsiness!). Beyond that, I just have occasional short 'attacks' of spasticity (hands,legs, feet) and what I call "electric torso" (tough to describe, but painful & maddening - maybe a topic for another post). I don't love it, but it's way better than not being able to walk or drive!

Best of luck,

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: The story of a lucky guy who's got MS

Postby euphoniaa » Tue Dec 27, 2011 12:46 pm

MarkLavelle wrote:That's me - a lucky guy who just happens to have MS.

How can I feel lucky? I'm still here, and still able to do all the things I really care about doing.

So let's recap: no more back trouble, no stroke symptoms, and MS. I'll take it!

Hi Mark, and a belated welcome. What a story! I'm sorry you've been through so much. I think we met on another thread, so I'm glad to see you're already finding your way around and getting to know posters a bit. I do recall some of your posts and often identify with your take on things. Our stories have as many differences as similarities, but I’m another one who still feels lucky after receiving multiple diagnoses.

I always say I’m plagued more by the sheer quantity of symptoms and dx’s than by their severity (unlike you). After my initial dx of both MS and HNPP (both my CNS and PNS are screwed up) in July 2003, my right knee (non-MS side) swelled up like a grapefruit while I was waiting for the LP results and I had to have my kneecap taped into place for 6 wks (degenerative joint disease) along with PT. While that was going on, a suspicious mammogram had me scheduled for a breast biopsy for January.

And the lucky part: :smile: That November they added Long Term Health Insurance at work and current employees could be ‘grandfathered’ in without exclusions for pre-existing conditions. And the taping stabilized my knee so that 8 yrs later I still don’t need surgery. And the biopsy results were benign.

Since then there has been so much more of the same that I’ve developed the attitude of ho-hum, another day, another doctor, another diagnosis. There’s no way for me to ever match my myriad symptoms to my myriad diagnoses (my neuro agrees), so I don’t bother to try.

More similarities: I agree with your comment above: “How can I feel lucky? I'm still here, and still able to do all the things I really care about doing.” Plus, you know what a physiatrist is! That’s the doc who diagnosed me, but very few seem to be familiar with the field.

Sending wishes of continued healing to you and everyone else today. :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: The story of a lucky guy who's got MS

Postby bartman » Sat Dec 31, 2011 3:44 pm

Mark ,
You should check into bartonella. It causes havoc on the eyes...neuroretinitis. Steroids/cortisone would only make it worse. The testing for bartonella is unreliable, you just need to treat it with minocycline. Also check into Lyme disease.
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