Paranoid vs. headed in the right direction?

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Paranoid vs. headed in the right direction?

Postby SaintBernards4 » Tue Aug 16, 2011 7:07 pm

Hi, all...

I know that MS can present so very differently in each person but I'm looking for a bit of insight from people who are dealing with MS to either tell me that I'm being unnecessarily paranoid...or seek out a different doctor who will dig deeper.

I'll try to make this as short as possible...

Fall of 2009 (age 41 female) I was feeling PROFOUNDLY fatigued - to the point that I was sleeping 14 or 15 hours a day and still not feeling like I'd been to bed at all. I WANTED to join in life, but was just too exhausted to do so. Climbing just one flight of 13 steps would cause the muscles in my legs to burn and feel like Jell-O. I also was having problems with feeling off-balance, my right leg felt like it was a half-step behind in rhythm as I walked, I was having these odd dizzy spells where I was feeling as though I was floating half-in & half-out of my body as I moved and my moods swung wildly and unexpectedly from incredibly anger (and I didn't know why) to bawling my eyes out (and I didn't know what about). Additionally, I was having terrible, nearly constant muscle twitching, my hands & feet were tingly, I was dropping things and I was having a little trouble with my handwriting. Lastly, I had multiple periods where I'd have zig-zaggy sparkling lights in my vision before I would lose the left portion of vision in both eyes. The first time it happened, the ER doctor told me it was amarousis fugax (??spelling??) and that it was "benign" so I didn't seek medical opinions after that.

Eventually, I saw my PCP and he went directly to the "You're depressed" line and wanted to shove anti-depressants on me. He didn't offer testing of any kind. Prior to going to the appointment, I had spoken with my first cousin who has Pernicious Anemia and, feeling that many of my symptoms mimicked a vitamin B-12 deficiency, she urged me to ask for that testing. I pushed and wouldn't back down until the PCP relented. My B-12 level was 250...not low according to the lab, but low enough to account for my symptoms according to my cousin's Hematologist. At his urging, I started B-12 injections and within weeks my level was up to 1400 and my symptoms had all but disappeared. His recommendation is that optimum B-12 levels should run at least 900, preferably more like 1300-1400.

Fast-forward to Fall 2010, I noticed that I was beginning to get a low-grade tingling back in my legs, despite continuing with the B-12 injections. At random occasions I would have some dizziness, increased fatigue and even some blurred vision in my left eye but I couldn't put any pattern to it and racked it all up to being overworked and tired. It did make me start to sit up and take more notice, though, and I noticed a "spell" in March 2011 (age 43).

The numbness in my feet and legs seemed to suddenly crank up overnight. At times, I could hardly stand to put on socks, never mind a pair of shoes. If I did anything physically active, the muscles in my legs tired quickly and had that "lactic acid" kind of burn in them. When I walked across uneven ground, I had some trouble keeping my balance. The increased need for sleep had returned as well and I noticed the blurred vision in my left eye. Unfortunately, I didn't write down how long the symptoms lasted before clearing.

I was doing fine until 2 weeks ago when the tingling in my feet returned. The best way that I can describe it is that it felt like I had my feet submerged in a barrel of carbonated liquid. I tried to ignore it but it soon escalated to a horrible burning/itching that reminded me of that same sensation you get when you've been outside in the cold too long - my Grandma used to call it Chilblains, but I don't know if that's actually a correct name, or just the one she gave it. The blurring in my left eye returned and, this time, I had some trouble with what I guess could be describe as some slurring of certain words. Over a few days I could feel the tingling "climb" up my legs to the fronts of my thighs and my hands began to burn, as well. At the height of the burning, the backs of my arms were involved along with all of the other spots that I mentioned. I also noticed that the burning became excruciating whenever I took a hot shower and then took several hours to die back down to its previous level. I do a lot of walking at work and I would notice that the muscles in the backs of my calves felt very tight the longer I walked, like I was getting Charlie horses. If I sat for a bit, they'd loosen but would return after I walked for a bit again. I also was fatigued enough that I laid around and/or slept on the couch every chance that I could get. I pushed my PCP to recheck the B-12 but he wouldn't go with any further testing. The level was 1193, so it doesn't look B-12 related.

Am I justified in thinking that my symptoms could be MS...or am I just paranoid over nothing like my PCP is trying to convince me? Why did the B-12 injections seem to help at first, but not now? Should I look for a different doctor who is more willing to entertain other ideas?

Thank you for any advice/insights that any of you might be able to give.

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Postby lyndacarol » Tue Aug 16, 2011 8:37 pm

SB4 – I am not a physician, but as a person with MS I think your description could fit with that disease. As you discovered with the B12 adventure, symptoms may have many causes. Even the symptoms that you felt improved by taking vitamin B12 may have had another reason altogether (or no reason at all, spontaneous remission can be part of early MS) and only happened to improve coincidentally when you got the vitamin B12.

If you feel that your doctor is not interested in the detective work necessary for finding the root of your problems, then seek out a new one. You are not paranoid; you KNOW there is a problem. Different doctors have different talents; you need one who enjoys "sleuthing!"

My own suggestion is find one – GP or internist – who will establish a baseline with a thorough physical exam and very thorough blood work, especially a cortisol test, thyroid hormone tests, and a fasting blood insulin test (in addition to a glucose test – glucose and insulin are two separate tests). My current suspicion is that insulin resistance (and its resulting excess insulin) is fundamentally involved with MS; this idea is not generally accepted by anyone else.

You have found a supportive community here. We welcome you; we welcome your questions and input here.
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Postby jimmylegs » Tue Aug 16, 2011 8:46 pm

welcome to TIMS, st. b. lots of support here :)
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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