Still being tested

[kittenfood]

Hello. At this point, I'm not really sure what I have, but over time, it still feels like the cause of my problems might be MS, on top of some other things. I'm trying to get everything narrowed down to figure out what's causing what, but there have been a few constants while figuring some other things.

I originally went to the doctor for two reasons: 1, digestive issues and 2, brain fogginess/limb heaviness stuff. When I had the appointment, I wasn't having the issues with reason 2 and forgot to bring it up and basically went over digestive issues with him, he suggests a yeast book for me to read and tells me to call if it doesn't help.

I took awhile to make a second appointment, I think partly because I don't like going to the doctor (especially one who brushed off most of what I said) and because I wasn't completely convinced it wasn't anything more than stress over the years taking a horrible toll on my body.

Between the time of my first and second appointment (I think about 6 months passed), my health started to go downhill; One time, I worked 8 days in a row, with the 7th day a closing shift (until 11) and the 8th day an opening shift (6:30 in morning). My body was soooo exhausted, but nothing more than that until I went back to work after a 2 day weekend. My legs were extremely weak (jelly legs) which I passed off as stress related. I figured I didn't get enough rest. After that, though, all rested up, leg issues continued. I became really really stiff whenever I stood up, but didn't take much notice until the car broke down and decided to start biking to work. It helped greatly, but I didn't notice until my vacation when I went 7 days without biking and I was super stiff, feet dragging type walking. I started to stretch and decided I needed to keep biking. My diet was also downhill that week. I normally ate spinach everyday, but that week I did, which in hindsight might have something to do with it (very anti inflammatory??)


I also figured during this time that the fogginess (and other) issues were caused by low blood sugar and started making sure I ate regular meals, which helped greatly.

After the first appointment, I also started eating a spinach salad everyday because of something the doctor said about folate (and where better to find folate than leafy greens, hehe). Then, I noticed on the days where I didn't eat the spinach salad, I was feeling worse. Anyway, I now eat 240g of spinach everyday, because if I don't, I notice it the next day (or later in the day) with various symptoms (it turns to be 2 large salads, which is basically the foundation of breakfast and lunch, with other things on top to round out the meal).

My toes/feet started tingling/burning, first infrequently, then often. Biking to work was a struggle near the end; Even in 20 some degree weather, with a backpack on my back, I would get overheated and had got weak and had trouble biking straight, which I just took for being out of shape and tired. I nearly passed out in the bathtub a few times to the point I always had ice water to drink and a window open (in winter) just in case (this actually happened once before 1st doctor appt). I noticed that I felt better when I ate liver sausage (I can't think of how to spell the german name for it. hehe), and took to eating an ounce of it (most) mornings. I noticed I did better with foot stuff and I could handle the bike ride a lot better. I guessed b12 issues (which turned out to be true). I upped the liver sausage to 2 oz a day (still within safe limit for vitamin A), half in morning, half after work and feet tingling happened very rare after a few days. So, I started taking b vitamins after a blood test and started noticing getting feeling back into hands/feet/legs/face. Every so often, I will come across something new (like, oh, wow, that spoon from the fridge is COLD. I don't remembering it being cold yesterday). Great. Getting better.

Between the first and second appt, I also started to get confused (not what I would necessarily call the brain fog I had before that I now attribute to low blood sugar and stuff . . . which is ALMOST fixed since I started eating the liver sausage). I'm pretty sure it was weeks where I was at work and I would just stand there, confused, like "I know I'm supposed to be doing something . . . but what?" Its mostly gotten better now with my current diet, but I'll still do that, some days better than others, but that underlying confusion still seems to be there. Still could be b12, I guess.

My b12 symptoms have been getting better, but I still feel like I've been getting worse. My last period, the week leading up to was pretty bad. Symptoms started coincided with my first day of PMS (jelly legs, speech problems (oh, did I mention my speech has gotten worse? Forget names of things and stuttering gets worse during bad days), so I just figured hormones, but it was the first time I ever had symptoms like that for PMS. Second day, jelly legs better and by third day, legs weren't really weak anymore. During that week, I also had two extremely bad allergic reactions -- not bad enough to go to hospital, but any worse and I would have because through swelled like crazy), one day after another (I'm pretty sure its mustard that set it off, which was a completely new allergy . . . but I'm pretty sure that's because of the leaky gut because I had a sauce that had whole mustard seeds in a few months prior and hadn't had mustard since), and after that, all the nerve type symptoms seem to cycle. Like that day and the next, it was like a review of all the symptoms I got over that past year and a half. Feet burning for a day, random shooting pains all over body (mostly back), and I think some other things can't remember at the moment. Day after that day was the day right before my period. I couldn't walk well at all. Not really jelly legs, more like it was taking a lot of effort to walk (like, okay, pick up foot, put it down . . . ) and feet dragging. I'm not sure how to explain it. I think if I walked slow, it could almost make my strides looks normal, but it was still enough that EVERYONE was asking me at work if I was hurt. And my job involves basically mostly walking, so I couldn't hide it. The more I kept walking, though, the easier it got. Amazingly, biking is easier than walking.

And the exhaustion. I've managed to get a regular schedule at work, so now I sleep regularly and don't have any sleep problems sometimes. I'm almost never tired except at the end of the day. But on really bad days, just something like counting money make me more exhausted enough that I took to counting while sitting. My diet does help greatly, though, but if I stray a little bit, the exhaustion comes back.

This last time I got sick, a few weeks ago, it was one of the 24 hour stomach bugs going around. It took me a week to get rid of it, and then I was still super super exhausted (this was during the time that counting money felt like too much energy being expended). The first day I was sick, I was having walking trouble again, but I took it for being in bed all day (I'd get stiff if I stopped the biking 5 days a week, which at this point is becoming less effective). I wouldn't say they were weak, but again, harder to move. The next day, I felt better (not good) and went to work. legs a little weak. The next day, worse than the first day sick. 3 days off to get better. By second day, I started making my salads into green smoothies so I would get food into me because my body can't handle fasting. I went back to work after the three days, a lot better stomach wise but super exhausted and horrible feeling and my legs were weak. I fell off my bike twice in as many days when I ways stopped (the first time, my legs didn't seem to correlate me stopping the bike with me actually getting off the bike and my legs didn't seem to want to catch me once I got off, and the second time, I was at a stop, looking right, lost my balance and fell to the left. Usually, in the past, if I loss my balance like that, my leg would catch it. This time, it gave out. I'm not good with being weak, and since biking helped my legs in the past, I took up running again (I took up running/jogging when I noticed my legs weak the first time, but then got stronger and I stopped). I fell twice during one of the earlier runs, I think my feet were dragging, but it helped get my legs stronger, but there's still a weak, shaky not not quite shaking feeling hovering in the background.

Somewhere in there (the main things that seem to be wrong all seem to start after an event, like too much stress on body, or during a 'bad patch' or getting sick, but unfortunately, I don't have a very good log because when this all started, I didn't think to keep one), I started to get muscle cramping. Well, actually, since I started to get feeling back from the b12. it started out as barely there (although, the day before one of my earlier period, my thighs cramped so bad I couldn't tighten them anymore. Thankfully, it was before I could feel a whole lot, and it felt more sore than anything. And I learned that actively tightening and loosening loosened the cramp a bit. That was an isolated issue, though. . . haven't had it that bad since), but its happening more frequently now. It usually my thighs, the left half of my neck and the left half of my back, although I've noticed some in my hands, too (left more than right, I think). More painful, too, but that might be because I've got more feeling now. Still kinda dulled.

Since I got sick this last time though, it feels like its taken me more effort to feel better like before I was sick. In addition to my 2 salads, I now have a green smoothie for breakfast and one after dinner (not spinach, some other leafy green that I mix out, with varying fruits). Also, I've noticed a decrease in tolerance to what is probably inflammatory foods (I noticed when I ate plantain chips and cheese. This happened two days in a row). Instead of the tingling I used to get (after stuff like grains and potatoes, which I originally assume was something to do with a rise in blood sugar (not high, just higher because my it happened after eating stuff that raised my blood sugar . . . whatever), but I think now is an inflammation thing (which makes more sense on the scope of things), its now pain. Not quite constant, though, like, the bottom of my feet/foot will hurt like I'm walking a pile of pebbles, and then it would subside. Then it would happen again and subside, then it would move up to my leg and then subside. This happened two days in a row.

I'm sure there's more, but this is what I remember now because its most relevant right now. Sorry its so long, but just a 'feet tingling' and 'trouble walking' and 'pain' doesn't feel like it summarizes everything that's going on. I'm narrowing things down and getting then fixed, but something keep happening and then I get worse and it gets harder and harder to compensate to feel better than horrible. Right now, more than than 2 weeks after a simple stomach bug, I'm finally feeling half decent after adding the smoothies and forcing myself to run to help my legs (although I have some pain in my thighs right now; my diet seems to help the cramping only a little). The pain isn't joint pain, its between joints.

But anyway, does any of this sound familiar? I'm not one to freak out, I'm more trying to just figure out what's going on because its feels like it shouldn't be so hard to be able to get through a day physically. My aunt on my mom's side had a reeeaally bad case of MS, but I was too young to really understand what MS was other than how my mom described it (she basically explained it as the sheathing on her nerves were being torn off like the insulation on the pipes in our basement), so I don't really haven't anything to compare it to or anything. The doctor I have doesn't know much at all about that sort of thing (he tried to prescribe me anxiety medication for what turned out to be b12 issues because he thought I was having constant anxiety. I refused those because my anxiety is under control, and he referred me to a councilor who said I'm managing the stress of everything fine and didn't see me having to see him again unless I felt I needed someone to talk to. I did have a brain mri (none of spine) which they said turned up clear, and he seems to think that in and of itself ruled out MS. I need to make an appt, and I know he'll keep testing me for things until we find something wrong, but he also hasn't listen to all my symptoms or what I think might be happening to cause them from how I make it better (I'm a scientist by nature). He gets something on his mind and it sticks until he's proven wrong. I was hoping to be over this once I found out about the b12 anemia, but seems I was wrong.

[kittenfood]

My coordination with my hands has also gotten worse. Its harder than it was get get a key into a lock, but I don't think my hands shake, visibly, although they do seem unstable, especially right after they've come to a stop

[jimmylegs]

hi and welcome

have a read of this, and tell me what you think?:

MS Nutrition-summary pts 1st post, p.1
http://www.thisisms.com/forum/regimens- ... tml#p15460

[lyndacarol]

Welcome to ThisIsMS, kittenfood.

Every one of the symptoms you describe – from toes/feet tingling/burning to brain fog to fatigue to weakness to stomach and G.I. problems, etc. sounds like a B12 deficiency to me (I have NO medical background.). A person can develop a B12 deficiency at any time in life.

The last sentence in your initial post states, "found out about the B12 anemia." I assume this means that your doctor tested for a possible vitamin B12 deficiency by ordering the following tests: #1 serum B12 test, #2 serum folic acid test, #3 serum homocysteine test, and #4 either a serum methylmalonic acid (MMA) or a urinary methylmalonic acid (uMMA) test. I hope you asked for your own copy of these test results – would you be willing to share the actual result numbers with us? I assume you had not taken a vitamin/B supplement before these tests as that would have skewed the results.

Like you, none of us likes going to the doctor; but I suggest you compose a written list of all your symptoms (so you will not forget an important one) and return to your doctor to discuss them. With the complete picture of your symptoms, I'm sure he can organize the investigation to find the root of your problems – AND not all of your symptoms necessarily have ONE cause; it is possible there is more than one problem going on. Your doctor is in the best position to determine that.

We wish you all the best.

[kittenfood]

He hadn't ordered those others, just the b12, which I think was one hundred something. We're working on getting it back up to what it should be. I'm still hoping its just b12 and the symptoms are just becoming more noticeable as my nerves are healing. Still, wanted to put it out there because it feels like even though most of the things are getting better, some of the things are getting worse.

Thanks I've been keeping a log of everything recently, so hopefully that will help.

[jimmylegs]

a log is a super idea.

when i was b12 deficient it used to resolve so easily at first, then slowly, stopped working. it was only after i was at the point that my deficits were no longer reversible that i started trying to learn more and that was when all the other deficiency info started to crop up :S (not soon enough for me to get it all back though. had an accident before i had time to repair. lesson learned :S )