signs point to yes

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signs point to yes

Postby csquared » Mon Oct 31, 2011 6:08 pm

I'm a 35-year-old man getting closer and closer to a diagnosis of MS. Here's my story:

About eight months ago, I experienced numbness and tingling in the lower half of my body. I could walk OK, but I felt unsteady because of reduced sensation in my feet. After a few days of this, I made an appointment to see my primary care physician. He examined me, asked some questions, and ordered an array of blood tests. My vitamin B12 level came back as being low, so I started getting B12 injections, weekly for the first month and monthly since then (I'm about to go to bimonthly). My doctor said that nerve injuries can take a long time to heal and that I shouldn't expect immediate elimination of symptoms. At follow-up appointments, further testing showed that my B12 was inching up into the normal range (though more slowly than my doctor was expecting), and I felt that there had been improvement in my feet and legs. After four months or so, though, I mentioned that I felt like the improvement had plateaued; I had -- and still have -- some tingling in my feet and lower calves. My PCP referred me to a neurologist.

Over the course of several appointments, my neurologist ordered MRIs of my thoracic spine and brain, both of which showed lesions, and a lumbar puncture, which showed oligoclonal banding in the CSF. He said that this didn't definitively mean that I had MS, but he suspected that I would probably develop it eventually. However, he advised holding off on drug treatment for now. He scheduled me for another MRI in January and helped arrange for a second opinion from an MS specialist.

That appointment was this morning. It wasn't definitive either, but all signs seem to be pointing to a diagnosis of MS. There was a lot of information, but if I recall correctly, the doctor said that if there had a been a contrast-enhanced lesion on the MRIs, he would have said MS was nearly certain. He gave me a diagnosis of clinically isolated syndrome, which will likely progress to MS, and suggested I start drug therapy sooner rather than later. He also said I should get an MRI of my cervical spine. We briefly discussed the available drugs. He does not feel that oral Gilenya (fingolimod) is appropriate for me and suggested an injectable, probably Avonex or Copaxone, though he likely won't be the prescribing physician, so we didn't come a specific conclusion.

At this point, I'm pondering whether and when to start treatment and which drug might be appropriate for me. I've told my immediate family and a few close friends, and I go back and forth between stoicism and crying. Everything I've read suggests that this condition is much more manageable than it once was, but the idea that my body may very well begin a slow decline is terrifying. And it wasn't that long ago that I expected my doctor to tell me that I had a pinched nerve or some other minor ailment, if anything at all.
Last edited by csquared on Tue Nov 01, 2011 6:54 am, edited 1 time in total.
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Re: signs point to yes

Postby CureOrBust » Tue Nov 01, 2011 12:58 am

I would find out why Fingolimod is not appropriate? it has a higher response rate in trials than the injectibles, and is a LOT more bearable to live with than an injectible, at least for me.

Also, if you do have a diagnosis for MS, the normal treatment for resolution of a relapse is treatment with steroids. Most use IV steroids, but I use oral prednisone (75mg / day x 3 days, no taper). Most people find these help clear relapses/symptoms well.

Good luck.
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Re: signs point to yes

Postby csquared » Tue Nov 01, 2011 2:50 am

Thanks for the reply.

Re: fingolimod
The doctor is not a fan of the potential toxicity. He also noted that several more oral drugs will likely be approved in the first quarter of 2012. I'll probably have another discussion regarding my options after I get the C-spine MRI.

At this point, I haven't taken any steroids. Would doing so make any sense for symptoms that are now eight months old? Also, I'm sure this is covered in more detail in another topic -- and obviously needs to be something I discuss with my doctor -- but is it common to take both a maintenance drug and occasional steroids, or does each of these represent a discrete treatment approach?
Last edited by csquared on Tue Nov 01, 2011 6:42 am, edited 1 time in total.
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Re: signs point to yes

Postby CureOrBust » Tue Nov 01, 2011 5:06 am

csquared wrote:The doctor is not a fan of the potential toxicity.
Welcome to the world of MS treatments... I of course am not your dr and have considerably less medical training and knowledge, but for me personally, I am not a "fan" of certain brain damage. I drew the line at Tysabri, that one was scary for me, with the potential for PML, not so much the death, but the irreparable damage you would live with for a non fatal case.

csquared wrote:He also noted that several more oral drugs will likely be approved in the first quarter of 2011.
You may be comfortable with the injections, I wasn't, and they (rebif) did not work for me. The current oral has been shown to be more effective, and there are no reports of bounce-back on stopping, so I would check if it is an option to take fingolimod until the "new orals" are available. I personally would not be holding my breath on their arrival, or that they are as effective with less potential toxicity.

csquared wrote:At this point, I haven't taken any steroids. Would doing so make any sense for symptoms that are now eight months old?
Normally I don't think they are prescribed that way. But I and others here have said that they notice the difference on old symptoms as well, simply less so.

csquared wrote:but is it common to take both a maintenance drug and occasional steroids, or does each of these represent a discrete treatment approach?
The standard treatment used to be one of the injectibles (CRABS) on a regular basis to avoid relapses, and an IV of steroids to manage a speedie recovery from a relapse when/if it did occur. That was the treatment prescribed for me when I was first diagnosed. Make sure you find out exactly what your steps are when / IF you experience your next relapse, no one took me explicitly through the steps beforehand.
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Re: signs point to yes

Postby want2bike » Tue Nov 01, 2011 5:50 am

Get all the infromation before you choose drugs. Have the doctor show you the studies suggesting these drugs work and what the side effects are. Ask you doctor about the Risk Sharing Scheme which was a drug study done in England. You might want to consider the Swank or the Paleo diet. They have shown success in treating MS. The things we put in our bodies are what causes disease.

http://www.facebook.com/notes/ccsvi-in- ... 1295097210

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.franksherwood.com/tnms.htm

http://video.google.com/videoplay?docid ... 466113431#
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Re: signs point to yes

Postby jimmylegs » Tue Nov 01, 2011 2:36 pm

hey there, thought i'd chime in because i was b12 deficient (among other things - poor nutrition - 15yr vegan) before dx, and b12 deficiency is one of the differential diagnoses docs are supposed to consider before they label you an ms patient.

in my case, there was a mix-up with my doctor's computer so they did not plot the 'no data' point on my b12 history - that was the test where no level was detected. therefore i got put in the ms round file. later i found out i had a lot of other nutrient deficiencies in common with ms patients.

you're smart to take the b12 thing seriously - you could think about taking a b50 complex because b12 also needs B6 and B9(folic acid) to absorb properly. magnesium and iron are also needed (but don't supplement iron without knowing that your zinc status is optimal - many ms patients are low in zinc and low zinc results in iron deposition which can cause an inflammatory reaction in the body - you don't want that)! if you want to know about good forms of zinc, magnesium, and iron, i can help you out.

classic b12 deficiency causes thoracic and cervical lesions, it is less common to have brain lesions from b12 deficiency but not unheard of - there was a study out in 2009 where they treated a man who had brain lesions with b12 and he improved.

fyi oligoclonal bands in the CSF indicate chronic inflammation, not ms in particular. you might want to learn about the 'inflammation factor' concept in foods - you can track your score over the course of the day. if you are feeding yourself an inflammatory diet, you can switch it up and aim for an anti-inflammatory score on the order of +100 or higher per day. the web site www.nutritiondata.com below provides IF rating info on a wide variety of foods.

ms patients are known to be lower than healthy controls in b12, b vitamins in general, vitamin d3, magnesium, selenium, and zinc. uric acid levels are also typically low (secondary to the low zinc). if you are interested in pursuing that line of inquiry i can help you with what tests to ask for, what your results mean, and what to aim for. the links included in my signature below provide additional reading if you want to follow up on this idea.

hth!
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