Life with MS & EDS

September 8, 2010

What’s one more pill?

Filed under: Uncategorized — by mseds @ 9:46 pm
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I used to hate swallowing pills.  I think that’s why I avoided vitamins for so long.  Then came injections for my MS.  After Copaxone and now Rebif, what’s a few pills?  My New Year’s Resolution was to start taking a multi-vitamin every day.  So far, this is the only New Year’s Resolution I’ve ever kept.  I added extra Vitamin D to that routine, so I now take 3 pills every day.  On Rebif shot nights, add to that 2 Aleve.  I’m up to 5 pills some nights.  So, what’s one more?

I recently read about Vitamin B12.  Until learning about CCSVI, I never would have thought to look into B12.  The more I learn about MS and CCSVI, the more it occurs to me that we need to be looking at the whole body.  MS is a complex disease and cannot be looked at through the narrow Central Nervous System lens.

Symptoms of a Vitamin B12 Deficiency are very similar to MS symptoms.  Per Wikipedia:

Neurological signs of B12 deficiency, which can occur with or without anemia, include sensory disturbances (due to damage to peripheral nerves caused by demyelination) and irreversible nerve cell death. Symptoms include numbness and/or tingling of the extremities, altered proprioception, impaired sense of smell, loss of appetite (anorexia), disturbed coordination and, if not treated in time, an ataxic gait especially in the dark when there is less visual reference[2]. In extreme cases, B12 deficiency can lead to a syndrome known as subacute combined degeneration of spinal cord.

B12 deficiency can also cause symptoms of mania, psychosis, fatigue, memory impairment, irritability, depression and personality changes.

Not all of these symptoms overlap with MS, but the majority do: fatigue, depression, sensory disturbances, demyelination, tingling of extremities, and so on.  Neurologists are just recently starting to talk about the importance of Vitamin D, but why on earth are they not mentioning B12?  My suspicions about neurologists continue to grow.  Why is it that the are so quick to prescribe expensive injections and other medications when something as simple as popping vitamins isn’t even mentioned?  It’s completely frustrating.

I’ve also learned that B12 plays an important role in anemia.  I’ve always just thought that was iron-related.  I’ve been anemic my whole life (I haven’t eaten red meat since I was 12 and rarely ate it before then.)  Every blood test I’ve ever had has shown that I’m anemic.  While pregnant I was told by my OBGYN to take iron, but no one ever mentioned B12.  At least the OBGYN was willing to discuss vitamin supplements, unlike my neurologists.  Dr. Specialist sees my quarterly Rebif bloodwork results, which always show anemia, and she just blows it off.  Dr. Generalist and my general practice doctor have ignored that, too, even though I’ve specifically asked each of them about my iron levels.  Again, very frustrating!

Speaking of anemia, from what I’ve read, B12 deficiency can occur with or without anemia, so you can’t only go by your regular labwork reports.  It looks like I am going to have to ask them to specifically check my B12 levels.  Not that I want them to take yet another vial of blood, but it seems that this information would be at least as critical as knowing whether Rebif is killing my liver, right?

The more I search on the benefits of B12, the more blogs and other websites I find that talk about the relationship between B12 and myelin.  Wikipedia has an interesting scientific explanation about the relationship between myelin and B12.  It’s a bit over my head, but still worth a read.  I wish I would have come across this information sooner.  I wonder what else is out there that is so painful obvious and simple to address that I’m missing because I’m not informed enough to know to go look for it?  If it wasn’t for my mom-in-law mentioning B12 and sharing an article, I never would have thought to Google it in the first place.

In honor of the Jewish New Year, I’m adding onto my New Year’s Resolution and adding B12 to my routine.  I hope B12 is as great as Vitamin D has been.  I’ll keep you posted!

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July 14, 2010

Achieving Normal

Filed under: Uncategorized — by mseds @ 7:24 pm
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During my first quarterly Rebif bloodtest, Dr. Generalist had ordered a Vitamin D test.  As you may recall, I scored a 39.  I was told that was “normal”, but most online advice says you need to be over 50.  So, instead of keeping with my 3,000ICUs of Vitamin D daily, I added another 2,000, even though it wasn’t doctor-recommended.  My total daily Vitamin D supplement was up to 5,000, plus whatever I got from food (e.g., milk, Vitamuffins, etc.)  I absolutely noticed a difference in my energy level.  I’m still chronically fatigued, but I am no longer on the verge of tears because of it.  It becomes very obvious to me and my husband when I forget to take the vitamins.  I knew there was a big difference, but I didn’t have proof.

So, I brought this up with Dr. Specialist when I saw her last month.  I had asked her about Vitamin D at some point last year.  At that time, she wasn’t on board with its benefit and didn’t recommend blood tests to check levels.  She’s since changed her tune now that more evidence is out there.  She wrote a script to check my D levels during my 2nd quarterly Rebif blood work.  Sure enough, the results confirmed what I’ve noticed.  My level is up to 61, definitely over the 50 I was hoping to exceed.  The extra 2,000ICU daily brought my levels up by 22.  I wish everything was that easy to fix.

I’m enjoying my small victory and success with going against doctor’s orders to do something that was clearly in my best interest.

February 26, 2010

Mind Over Matter

Filed under: Uncategorized — by mseds @ 10:01 pm
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As you know, I’ve been less than happy with Dr. Generalist and dumped him a few months ago.  I tried a new generalist that Dr. Specialist recommended.  My husband and I met Dr. Generalist II about a week ago.

I brought with my giant folder with MRI films, CDs, lab reports, doctors notes, and other papers related to my diagnosis.  I think my Ehlers-Danlos letter is in there, too.  After talking with the gentleman for a while, it was time for the exam.  It was the standard, “walk down the hall and back, walk on your heels, walk on your toes, shut your eyes, put your arms out, and touch your nose.”  Okay, I’ve done this all before.  No problem.  I’m good at the drunkard tests.  Well, I used to be good at them.  This succession of task orders was quicker than in previous exams.  I’d like to blame the pace for my inability to find my nose!  I thought I did somewhat okay, thinking that I hit the bridge of my nose rather than the tip, but I was mistaken.  While the doctor left us alone for me to get changed after he checked my reflexes and sensation, my husband turns to me and says, “you know you missed your nose, right?”  I explained that I didn’t think I was that far off to which he responded, “the first time you hit your eye.”  Yea, whoops.  He was probably right.  At least I was able to laugh about it.

After I got dressed, we went back into Dr. Generalist II’s office to talk.  While I was getting changed he had time to review the contents of the giant folder.  We talked about my history and where to go from here.  I explained that the original Dr. Generalist felt like he was playing second fiddle to Dr. Specialist and that he didn’t know enough about MS, so it just wasn’t working out.  It was only slightly less awkward than trying to explain to a new significant other why you dumped your ex.

We got into a discussion of MRIs and if I should keep getting MRIs down at Penn.  While we were on the topic of MRIs, he commented that, “given these MRI results, I’m surprised you can walk without a cane.”  I’ve had a hard time getting that statement out of my head since he said it.  I asked if it was unusual.  I take it that it is not common because his response was, “it’s better that you look like you do than your MRI does.”

Somewhere during that discussion we also talked about my Vitamin D levels and I said that I have no idea what my level is, but without daily supplements, I get extremely fatigued.  He said that the 3,000 IU I take daily is probably a good amount, but that he’d like me to get my blood tested to see what my levels are so that we can adjust the daily amount if needed.  I need to get my 3 month Rebif blood work soon anyway, so I’ll do that at the same time.  I’m glad he suggested the test.

I also asked about CCSVI.  He said I was the third person that week to ask about it.  I confirmed his guess that there’s a lot of buzz online about it.  He confirmed my assumption that the neurology world just isn’t ready to get on board.  He did say that he read the research and that it’s usually the kind of thing he’d be suspicious of, but he respects the doctors at Buffalo and that he’s curious to see their research.  I told him that I applied for their study and the testing there.  I guess that’s still my only hope since no one around here is willing to do the testing.  The folks at Buffalo sent out a note today saying that over 500 people have already applied for the testing and that they hope to contact people soon.  They plan to start testing in March.  That was good to hear!

So, the guy seemed decent and knowledgeable enough that we decided that I’d see him twice a year, but keep seeing Dr. Specialist for the MRIs.  It’s better to keep with the same MRI machines and I’d like to keep seeing her.  I’d keep seeing her exclusively, but she thinks it’s important for me to have a more accessible doctor in case anything ever comes up.  I think this guy won me over when we were talking about my diagnosis process.  I explained that I’d have been diagnosed much sooner if the first neurologist would have checked my spine back in 2001 and his response was that it’s not the patient’s responsibility to have known that.  I liked his attitude.

Ever since finding out that I have a lot of lesions on my spine, I’ve always been curious why I have so few symptoms.  My optic neuritis in my right eye seems permanent and I fatigue without Vitamin D, but otherwise it’s easy to forget that I have MS (except for the Rebif shots, of course.)  Then I have a neurologist basically confirm that it’s pretty amazing that I’m as symptom-free as I am and it makes me wonder.  Some people say it’s luck, some have even said it’s because G’d is with me (not sure about that one), but I think it’s mind over matter.  I’m someone who can talk myself out of getting a cold and will myself not to puke when nauseous (except while pregnant), so is it that strange to think that it’s mind over matter that I walk as well as I do?  Mind over matter is pretty powerful and I need to stop second guessing it.  It’s just not an option to lose the ability to walk, so I plan to keep on walking.

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