Sometimes it's not MS

[SNOOPY]

For the last year and a half (approximately) I have slowly started to lose my mind and mobility...my independance.

This was happening slowly and progressing month by month. For the most part I no longer drove, I scared myself and did not want to hurt myself or someone else.

I could no longer hold a conversation without completely forgetting what I was saying mid-sentence. When that happened all I could do is cry, I cried alot in the last year and a half. I no longer had any patience with anything or anyone.

I could barely walk...I would slide my feet. Breathing was becoming difficult. Everything was becoming very overwhelming.

I could no longer maintain my home, I couldn't do what I have always done for myself, my husband...my family. Depression started setting in, death was becoming more preferable...I was no longer the person I once was.

Through all of this I believed it was the MS and I was progressing at an alarming rate.

I now know it was not the MS progressing.

Everything I was expereincing for the last year and a half was not MS but the effects of one medication...

Lovastatin...used to treat high cholesterol.

I have been off of Lovastatin for approximately a month (give or take). The change has been amazing.

I year and a half of my life...gone, all because of one medication.

I decided to share my story so others

[KarenR]

Snoopy,

I am SO GLAD that you found out what was affecting you so drastically.

And you are so right. It's not always MS. Sometimes it's something far more serious and/or life threatening (think stroke, heart attack, etc.) Sometimes it's something very treatable, as was your case.

Finding the culprit is sometimes very elusive, isn't it?

This is a great lesson for everyone.

Thank you so much for sharing!

Be well,

[0485c10]

Are they treating your high cholesterol with something else?

i really like posts that indicate its not always MS. I can't hear examples of it enough. just because we are human being with MS does not mean everything is ms. hope they find a way to treat your high cholesterol effectively.

[Sequoia]

Oh Snoopy, I'm so sorry you've been feeling so awful for so long!

You've always been such a strong, courageous woman...and yet, I had a nagging suspicion for a while there that something wasn't quite right with you. I was getting worried, but there was nothing I could put my finger on so I figured I must be imagining it.

I'm very glad the culprit has been found and you're feeling better!

[HereIam]

Snoopy,

I am so glad you have found a resolution to this ridiculous "progression." I experienced the same thing as you, on simvastatin, only my reaction wasn't as dramatic as yours. Mine was take ridiculous fatigue and multiply it times 100. And then what do the docs do? Try me on every other statin in the universe, each of which induced the same reaction. Then what do they do? Since they have run out of ideas, they send me to a NP at a cardiologists office who promptly prescribes.... Crestor, one of the worst. I had it filled and have no intention of taking it. I'll call her and two weeks and say OMG it was awful, let's look at second line meds.

What has your doc gone to instead of statins?

[gomer]

STATINS are a problem for many people, MYSELF included!

I fought over the statin issue with my famdoc. MY cholesterol was not idea but within range, aka SUBclinical.

After the last debate, I simply waited till the day after that dr apt, quit taking my simvastatin, and wrote him a letter letting him know ME, MYSELF & I, all took a vote and decided to STOP the STATIN.

I WAS going down hill far to fast. Just getting out of my powerchair to walk across the kitchen was no fun! After stopping the statin I started getting better. NO I am not going to run a marathon, never could have done that even decades ago, but my limited walking is so much BETTER!

I also tried in vain to get my fam doc to put me back on thyroid (was on Armour), he refused to even consider it, saying he did NOT bother with SUBCLINICAL issues (well the cholestrol was SUBCLINICAL) go figure???

His advice was to get some Rogane OTC for the hair loss and IGNORE the waking up during the nite FREEZING cold. Even his nurse had suprised-shicked at how COLD I was at a blood draw for labs.

THYROID & STATINS.......
Statins are a known & documented problem in people with hypothyroid, even SUBclinical thyroid. MSers have a higher than occurance of issues with subclinical thyroids. (ran across it somewhere on a VA site)

The VA also refused to deal with my thyroid issue, the diabetes center said they dont get involved either. Fun-E since thyroid is part of the printed porticall in MY treatments plan, and in my over 4 years there NEVER tested once! When I asked about it the apt before my last one, the nurse said my TSH was tested fine several times, however my ENDO double checked and NO, NOT even a worthless TSH!

The best I got was from another nurse(?) at the diabetes center and gave me some guidence and info. I got a generic sub on my own. I titrated my dose back to what I had been RX'd before, and doing so much better.

MY thyroid seems to swing a bit, come and go, possable hasimotos (autoimmune).

Autoimmune diseases, having one increases the odds of having others. MS & psorasis are well documented in my case, my diabetes is a bit atypical but possable type-1a more likely type 1b, my diabetes is wierd and my label has changed a few times. Type-2, type-1, IDDM, & "other".
My wierd diabetes has been more like RRDM muc like my RRMS.....lol (no such formal reconized RRDM label exists. I had a scare of going on shots (insulin) when I was 14, again in the Navy at age 22, then in my 30s was hospitalized for diabetes...... ... I ended up on insulin shots, now Rx'd 5 shots a day.......not counting daily Copaxone shots now.

Back on THYROID... I sleep better, no waking in the middle of the night FREEZING cold, feel better and my hair is growing back. About the same time I seem to ahve thryoid issues again, my cardiologist had to lower my coreg due to lheart rate being too low, that is also back to my previous thyroid flare level and back on previous coreg dose. (have mild to moderate heart valve issues with my aortic, mitral and tricuspid.

Gomer Dr of Been There, Done That YEP!

[Spydre]

Snoopy,

I'm so glad your problems were figured out. You've inspired me to check all my meds for any problems that may be happening to me.

One thing I did find, by accident. The Geodon that I take for bipolar, if I'm up late and take it when I go to bed, causes the morning fatigue. I mean, if I get up at seven I nap until noon kind of fatigue. But I can't take it much earlier than midnight. Otherwise I'm asleep on the couch before my 16 year old goes to bed, or I fall asleep instantly when we get in the bedroom (causing another bedroom problem).

But my project this week will be checking all of my meds out, especially since I'm on a lot of them for various things.

So frustrating for you.

Hope you have no lasting effects.

[gomer]

PS...
This must be MS..........lol

I 4got to mention, my cholestrol went up after stopping the statin, but, after starting back on thyroid med it went back down.

THYROID is often an over looked villian in the cholestrol ring.

Gomer

[candycane]

interesting!

Very interesting! My cholesterol is slightly high (low thyroid too) & I've been avoiding meds. I'll think carefully & discuss this with my doc before I choose a statin med

[bubbadan]

Hi, I have also been having leg weakness while on Statins. I quit taking them and noticed a huge difference. I too am still on my thyroid med and all seems to be ok except elevation of my Cholesterol. maybe it will come down after a little while.

[susieqj]

Snoopy, I, too, am so sorry you have been feeling so bad for so long!

I'm very glad you found the cause of your problems!

[Shallwearpurple]

lowering cholesterol

This won't be possible for many people, but it might help someone...

I needed to learn to grind my own wheat and bake real home made bread due to food allergies for two of my children. After I started this, my cholesterol went down.

It is well known that whole wheat can help, but grinding your own whole wheat is better. If you can't take the time and energy to bake bread you can mix the ground wheat with a pancake or muffin mix to get the whole wheat in and not have as much effort.

I grind flax seed in a small, cheap coffee grinder and add it to bread, pancakes, muffins, and even casseroles. It is suppose to be godo for the brain and other body functions.

I haven't been able to do all that it takes to keep up with the bread baking in the last two years, not as often as I once did it...still my cholesterol has stayed down with occasional use.

[rdmc]

Yay, Snoopy! And thank you for sharing such informative news!

How did you figure this out?

I was wondering the same thing.

[Beema]

Just for the record I had this same thing happen to me with a statin drug back in 2001. I almost died as my liver enzymes and CPK were very high and the drs weren't paying attention. Thankfully a wonderful nurse practioner in my neurologists office had the intelligence to order blood tests and found I had the rare muscle thing(sorry can't say the name right now) that you get from statins. After 10 years I still have lingering damage from that. We all need to be super aware of our medications and possible side affects. My drs learned from that to not always blame everything on my ms.