I'm back, a year later, still no answers! desperate!

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I'm back, a year later, still no answers! desperate!

Postby SallyDC » Tue Apr 14, 2009 5:23 pm

Hi all,

I was on this forum about a year ago, scared to death i had ppms. well, after a clear brain mri last spring, i decided to try and take a breather from all of it. unfortunately, things haven't gotten better. in fact, they're way worse. A good number of you were so incredibly helpful and reassuring (shout outs to eyedoc, jimmylegs, notasperfectasyou, artifishual, g123, gwa, to name a few) i thought i'd come back! in fact, i just reread the posts/messages i received, and i already feel better!

to sort of go back to the beginning, two summers ago, there was something weird with my left arm. not weak necessarily, not tingly, but something felt weird, lower arm was stiff when i typed. i didnt notice it everyday, thought maybe i slept on it funny.

also, i noticed something "off" with my vision. not blurry, colors were fine, no eye pain, eye doc checked peripheral vision with some machine, optic nerve was "excellent" everything came back fine. couldn't figure out what was wrong with me. and not just one eye doc, i went to like 3 and none of them noticed anything wrong. still, i knew something was off. almost like my eyes couldn't focus or something. my anxiety went through the roof b/c i thought it could be horrible, something like a brain tumor. in fact, i believe i was so stressed that i gave myself a "non epileptic psyschogenic seizure." (google it, i know, i am officially crazy.)

eye problems (with the very occasional left arm weirdness) were my only problem for the first 5-6 months. then i started to get leg weakness, in my left leg specifically, and then both my legs, in the upper thighs. this is when i really started to freak. i had recently gone back to my optho and he agreed to get me an MRI of the brain. So, last may, i had a brain mri, w/ and w/o contrast and it came back clear. well, as far as my optho goes, that def. meant i didn't have ms.

it reassured me for all of ten minutes until i read that some ms only affects the optic nerves and spinal cord, hence the clear brain mri. well, i decided to take the summer off from investigating this mess, but went back in the fall after noticing what i'm sure is spasticity, specifically when walking the streets of DC in 95 degree heat and humidity.

this fall, i went back to my primary care physician, she ran all sorts of blood tests, all came back fine, negative on lyme (but i understand there is a general consensus those tests aren't always 100%, and i did spend most of my childhood summers on connecticutt and massachusetts, aka lyme central) and my b12 was 467, which i thought was interesting. Jimmylegs, if you're reading this, feel free to chime in! Clearly, its well above the 200 mark, but then i remember reading about how some drs think anything below 500/600 should be considered a deficiency.

by the time i saw her, my eyes were still somewhat bothering me, my legs were getting weaker, but i wasn't noticing the spasticity so much as the weather was cooling off. i also started getting weird leg pains, like not my muscles or nerves, but my bones hurt, like growing pains. one night when i was coming down with what felt like a little cold, my entire body, hurt so unbelievably bad i had to go to the ER at 2 in the morning. i tested negative for the flu, the ER doc was bewildered as to what was wrong, and after several doses of ibuprofen, she finally had to put me on percocet to get rid of the pain. i also started becoming sensitive to noise. oh, and occasionally i feel as though i can't completely empty my bladder, but thats rare. i also all of a sudden became somewhat lactose intolerant, and i noticed i was having problems wearing my contacts. anyway, my pcp saw my clear mri (i'm going to GW medical faculty so all my docs are in the same hospital, and they can all see my test results), and my normal test results (she dismissed my b12 as being perfectly normal) and tried to prescribe me an anti-anxiety med. i told her no.

well, from then, things have gotten progressively worse, so i finally got an appt with a neurologist at GW. but oh, did i mention, the day before my appt with the neurologist, his asst called and asked if we could push it back A MONTH b/c a "meeting" came up? I was almost in tears. i had been building this appt with him up for so long and now i had to drag it out another month??

fast forward another month (this march), and i finally got in to see him. he did a neurological exam, and i passed with "flying colors." he agreed to do a c-spine and t-spine mri w/ and w/o contrast, but he said the clear brain mri made him think i didn't have ms, and he wanted to check for anything structural. when i told him i was worried about PPMS b/c i read brain mris are frequently clear with ppms b/c it can only affects optic nerve and spinal cord, he replied with "my my, someone's been doing their research." if he only knew. Also, my cousin was recently diagnosed with chiari malformation, which can cause spasticity and eye problems. let me add, the spinal mri was the worst experience EVER. i knew i was somewhat claustrophobic from the brain mri, but ohhh myyy god this was bad, laying in that horrible machine for an HOUR AND A HALF not being able to move?? how do you people do it???


anyway, the nurse of my neurologist called me back to give me my results. this was it, i thought, something is going to come back, lesions, atrophy, something. well, it came black CLEAR. i was shocked. brad pitt could have called and proposed to me and i would have been less surprised than to hear this. she said everything checked out normal,no lesions, no atrophy, no weird white matter/ grey matter business going on.

so i'm going back to my neurologist soon to demand an LP and some VEPs. i feel i've been a bit too complacent with the dr's and haven't stood up to them enough, and i know he's going to object to those tests, but ill keep pushing. and if he says no, i'll got to another doc.

right now my vision is still slightly off (though oddly it hasn't gotten worse really from the beginning), my left leg/foot is somewhat weak, i have occasional spasticity (more so in right calf, i think b/c it seems as though im losing some muscles mass in my left leg), more when im stressed, i still have some bladder problems, my thighs are still weak although i can walk fine and good distances (1.8 miles around the tidal basin to see the dc cherry blossoms thank you very much), only occasionally does my left forearm bother me, usually if i lift weights at the gym my elbow starts to hurt, or when i type a lot (such as now) my fingers/hand feel still. still sensitive to noise, but the bone pain has mostly gone away, as has the lactose intolerance, weird, i know.

so basically, i still think i have ppms, but now with the beginnings of some Fibromyalgia from the stress of it (hence the bone pain and sensitivity to noise).

occasionally, though, on a particularly good day, i somehow manage to convince myself i don't have it. I think: ok, so, only 10-15% of people have PPMS, and of those, only 1-7% start with vision problems, AND I had a clear spinal MRI almost two years after all of this and i'm 23 years old and female. what are the odds?

basically, i want to know if you think i should pursue looking at any other diseases besides MS. also, since i didn't show any lesions on the spinal mri, do you think that just maybe, if i do have ppms, it might mean a slower disease progression?? and if the LP comes back clear, then what??would i def. not have MS then? and is it possible that my quick progression is not necessarily due to quickly progressing MS and that it's just my stress that is making it so much worse?

this is has been a horrible experience. i can't focus at work, when i'm really down i'll start crying and i can't eat, and whats worse is that after the clear spinal mri my family was so happy and relieved that i "didn't have MS" that I cannot imagine telling them, esp. my mom, that i still think something is seriously wrong with me. she worries about me, not so much about me having MS b/c if i do we'll "deal with it then" but about me being so upset about it. the worst part of it is, even after these horrible tests and the even worse anxiety, i will still probably end up being diagnosed with PPMS. It's like running a marathon only to end up coming up in last place. And, according to one website, because its already affected more than 3 of my FS, it appears as though i'm going to be one of the unlucky ones who progresses more quickly to an edss of 8. awesome.

anyway, thanks to those of you who actually made it through this! I know it was insanely long but i had to get it out to some people who might listen, as opposed to the doctors, and you people seem to be much more knowledgeable of this disease anyway! When i suggested to my pcp and her med student intern/helper that sometimes ms has clear brain mris, the med student/intern rolled his eyes at me and scoffed. arrogant prick.

anyway, i swear i'm not usually that unpleasant! on an average day i'm calm and cool and put 100% of myself into being strong and not let this, whatever "this" is, burden my loved ones. I guess it's just a bad day and i'm just really frustrated. any help/advice/suggestions would be greatly appreciated!!
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Postby jimmylegs » Tue Apr 14, 2009 5:55 pm

hey there sal, welcome back even though it is not in any sort of fun circumstances :S
yes they'd probably dismiss the 467 level b12, but it won't do you any harm to get it a little higher as you mentioned.

and there's more testing you can get into besides b12, such as:
if you can ask for a few additional tests, try for
-vitamin D3 (25hydroxyvitamind3 not 1,25dihydroxyvitamind3)
-ferritin and RBC folate,
-uric acid, and
-zinc.

that's pretty much exactly what is on my current lab requisition. i'm taking a few days off my supplements so i can get a clean read of where things stand.
also what is your daily supplement regimen these days? can't remember where all the thinking was at exactly, last time you were on here.

ttfn,
JL
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Postby SallyDC » Wed Apr 15, 2009 2:48 pm

Thanks so much for getting back to me jimmylegs!

At the moment, I'm not taking any supplements. I know, I'm awful!!

I did, however, pick up some B12 and Magnesium at the store after work today (well, before work i quickly picked up what i thought was b12 only to get to my desk and realize it was B2. ugh). Anyway, I'll def. ask for those other tests next time I go in. I do remember having my uric acid done recently, and it was slightly higher. not high, within the normal limits, but on the higher end. Is that common with MS or is it usually lower?

Thanks!
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Postby jimmylegs » Wed Apr 15, 2009 2:57 pm

hey there, no probs! get with the program sal, ya baddie ;)

hate that when you grab the wrong bottle/package. say, if you go back to the store for the sake of b vitamins, probably best to go for a b-50 complex, not just a lonely b12!
what kind of mag did you grab?

with the uric acid, if the 'normal' range is 140-360, ms-ers on average fall around 194. relapse lower, remission higher.
healthy controls sit around 290-300. so if you're in that neighbourhood, awesome! if the numbers here make no sense to ya, tell me your results including units and i can figure out the conversion.
uric acid status is related in part to zinc status.

the d3 test is an important one - go for levels 100-250 nmol/L (you divide by 2.496 or something close to that to get the imperial units on that one). if you haven't been taking any supplements, dollars to donuts you are NOT over 100.

no worries have a nice eve :)
JL
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Postby notasperfectasyou » Wed Apr 15, 2009 3:27 pm

I'm not sure what to say. If this all happend to me, I'd try other doctors. Maybe other types of doctors and I'd get out of the GW system for second opinons. Meaning, I'd shop for a completely fresh untainted opinion. Maybe try a neuroopthomologist, or its called something like that. Get out of the city completely and see a neuro in VA. Check out the annual edition of Washingtonian for the top doc's list. Or better, subscribe to Washington Consumers Checkbook and use their neignbor to neighbor area to see personal reviews of doctors. top of the head ideas ..... Ken
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Postby jimmylegs » Wed Apr 15, 2009 4:09 pm

yes along that other dx vein, perhaps what you are dealing with is somehow peripheral - so far. aren't there people out there who have symptoms for years before the ms dx criteria show up on someone's scanner? i wonder what they would have said about your symptoms in the years before the mri machine.
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Postby patientx » Wed Apr 15, 2009 4:21 pm

Please don't take this that I am making light of your symptoms. It sounds like you are going through a frustrating experience. And I know how frustrating doctors can be sometimes. But I think as you approach this, you should do it without mentioning a specific condition. I've seen many forums lately (maybe because I'm spending too much time on the internet), where people have a certain set of symptoms, and already they're asking what they should do about their MS. And is your case, you've already narrowed it down to Primary Progressive.

Ken's advice is good. Maybe try Virginia or a drive up to Maryland for a different doctor. But if you do seek out another opinion, it might just be best if you describe your symptoms as best you can; providing a written timeline will be even better. Then let the doctor do his or her job.

i was worried about PPMS b/c i read brain mris are frequently clear with ppms b/c it can only affects optic nerve and spinal cord


I don't where you read that, but I'm not sure that's entirely correct. Others can correct me if I'm wrong. But, as I understand it, spinal lesions are more prevalent in PPMS, but that doesn't mean brain MRIs are clear. There is a disease called NMO/Devic's , where the optic nerve is affected and spinal lesions are seen without brain lesions.

I wish you the best, and I hope you find the cause for what is ailing you.
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To SallyDC

Postby lyndacarol » Wed Apr 15, 2009 7:21 pm

To SallyDC--First of all, welcome back.
Next, I will tell you that my first three MRIs showed no lesions and I was told that I definitely did not have MS. However, my symptoms continued and increased in number. I DO have MS.

As to your case, since the diagnosis of MS is usually made by ruling out everything else, I encourage you to work with a physician you trust, who is convenient for you (GW?).

I encourage you to READ everything you can find on the subject. You might consider titles found on the "Reading Nook" here. You might find The MS Solution by Kathryn R. Simpson, M.S. especially interesting because of the author's similarity in looking for the diagnosis. (Page 10) "I had everything tested that he and I could think of. We tested amino acid levels; did complex immune function tests; tested every kind of virus and bacteria you can think of; looked at fatty acid levels, parasites, digestive function, allergies -- you name it, we did it."

(Page 13) "I continued research on the rest of the endocrine system and also read up on thyroid testing. I soon realized that thyroid testing is completely confusing and there are a lot of variables to evaluate to get an accurate picture of your thyroid health.... Sure enough, when I finally had the whole picture, it was obvious I was completely deficient in one of the thyroid hormones that is virtually never tested: something called T3 -- unfortunately the type of thyroid hormone most biologically active in our bodies."

There are many possibilities to check out; my own personal recommendation (to no one's surprise here) is that the insulin levels should be established (This hormone is secreted in the pancreas -- one of the nine glands in the endocrine system. This system regulates and controls an extraordinary number of your body's functions; it makes more than 100 hormones.).
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Postby LR1234 » Thu Apr 16, 2009 3:51 am

Hi not trying to hijack this thread but I have abnormally high insulin levels (after a 3 hour glucose test) and I have suffered with attacks of low blood sugar. Do you think this could have some connection to my MS?
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Postby jimmylegs » Thu Apr 16, 2009 5:42 am

LC will agree fully. there's a thread around here linking glucose insulin inflammation, c reactive protein, and a bunch of nutrients, which you may find interesting. i'll see if i can locate it..
Last edited by jimmylegs on Thu Apr 16, 2009 5:48 am, edited 1 time in total.
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Postby jimmylegs » Thu Apr 16, 2009 5:47 am

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Postby SallyDC » Thu Apr 16, 2009 6:17 pm

Thanks all!!

It seems the general consensus is to start looking around for another neurologist and get a second opinion, which I most certainly will do.

Jimmylegs: I think i calculated that my uric acid was 224. Hmm not so high, huh? And that magnesium I got is 250mg, plain old magnesium (no other vitamin with it.) how does that sound? too high? should it be with another vitamin? and i take it at night before i go to bed. does that sound right?

Lyndacarol: GW = George Washington Medical Faculty Associates, it's the hospital connected to George Washington University here in DC!

Now it's just a matter of not going crazy in the midst of all this. I guess until I see another neurologist, I'll try and focus on anything but what the future might bring. So my main question is: how do you do it???


have a great evening! :D
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Postby jimmylegs » Thu Apr 16, 2009 7:28 pm

heya, yes 224 for UA is a bit low if you're using those healthy controls as a guide :S
i'm experimenting to see if zinc repletion helps with my UA level, and i'm getting the blood taken tomorrow. i'll let you know how that pans out - if your UA is down, your zinc could be down too.

optimal zinc = 18.2

with magnesium 250 is fine. you want to take 2 per day, at separate times. one at bedtime is great.

if you can find some d3 and calcium to go with your other daily 250 mag, earlier in the day, cool. :)

by what kind, i meant what form. mag citrate? oxide? some are less absorbable than others. if it's oxide that you've got, i would not recommend going higher than one a day for a week, then bump up to two and see how your body handles it (the less soluble forms are laxative, kinda hard to absorb nutrients when things are blasting thru ya too fast!)
HTH,
JL
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Sally I'm in a similar boat

Postby JenniferF » Sun Apr 19, 2009 10:59 am

Sally, just wanted to say hello and that you aren't alone. Eye don't have the eye symptoms, but as far as the arm and leg thing, I've got that going on big time. (If it makes you feel any better, I've got some interesting heart symptoms probably totally unrelated, to kind of spice up *my* day. Probably benign, lol. Nothing like 'probably' on a heart thing, lol.)

I'm on hold diagnosis-wise. We've ruled out the problems that I would want to treat aggressively (a tumor, for example). But I recognize that it is difficult to explain to a physician that I have muscle weakness when "weak" for me is stronger than many people are today due to sedentary lifestyles, and because in a simple squeeze-my-hand type of test, sure I can make my weak hand squeeze hard once or twice, no problem. The fact that I know something is wrong is not a symptom the Dr. can objectively evaluate.

I suppose I am fortunate, in that if I do have MS I would rather take a watch-and-wait approach to managing the illness. I can see where if you are the type who would want to start aggressive treatment ASAP, getting a specific diagnosis would be important to you.

Anyway, right now I look at it like this: If I do have MS, either it will out itself with more dramatic symptoms, or it will settle into a nice benign case (my choice, hehe -- where do I sign up? :-). Meanwhile, I'm just doing what is best for everybody: I rest when I need to rest, I exercise as I can to stay in shape, I try to eat well and take what supplements make sense for my situation, and I try to stay calm and low-stress.

Meanwhile, I am getting good at asserting myself. Frankly, it doesn't matter whether I have MS or am just a natural weakling, if I need to sleep or rest, I need to do it. I don't owe anybody a Dr's note in order to explain why I have decided this or that activity is not one I am up to right now.

***

Anyway, I feel for you. Since a diagnosis seems to be important to you, I will ditto the others and suggest you to start fresh with a different team. In the meantime, I'd encourage you to make it your goal to be as healthy as you can be, regardless of whatever illness it is that you have. No matter what you've got, no matter your age, the basics of good care are the same and have been shown to help every condition. That to me is really heartening.

Good luck & hang in there!

Jen.
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Postby jimmylegs » Sun Apr 19, 2009 11:59 am

jen what kind of heart things..
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