Should I just give up?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Should I just give up?

Postby silverwings87 » Mon Jul 22, 2013 10:32 pm

I've been to a few doctors, they have mostly just passed me around to other doctors... I saw one Nero who basically didn't want anything to do with me because I didn't have insurence, said "we've got everything charted", and sent me out the door. I then talked to the nurse and she basically told me and not in so many words that they couldn't make any sort of a possible diagnoses or possible road to go down because it would cost money to get the tests.

I then went to a MS clinic, the PAC there found weekness in my right leg, found I was unable to walk in a straight line anymore and he said the tremor in my right hand was either an intention tremor or muscel weekness. I was able to get a MRI for free though the MS network (can't remember the name). I got my MRI (Just of the brain ) and all they found was one lesion, and said it was an age realated change. (I'm only 25)

I had one more appointment with him a bit later an he found weekness in my left leg this time, as well as an increased reflex. So he set up an appointment with a speicalist. He did look at my mri, and said it was all normal, did a very brief Nero exam (And I do mean brief ) and said, your mri is clean, you dont have Ms. Well, that's great and all, but then what is causing my symptoms? He then said, "we'll do blood work, if nothing shows on that, then usually with people who have a bunch of symptoms we cant figure out, we just group people with chronic fatigue if fatigue is there main symptom, or fibromyalgia if its pain.

Wtf?!?! I don't want to be grouped, I want to FIND OUT WHAT'S WRONG!!

So far all of my blood tests have come back normal, Including B12 and a whole list of other things, I'm taking 4000 IU of vitamin D and 500 mg of magnesium a day as well as a multivitamin Now, The magnesium has seemed to help with a little of my fatigue, but other than that everything is pretty much the same.

some of my symptoms started As long as five years ago but, they started becoming bothersome just three years ago, They started as a dot in vision, Saying the wrong word, and hands tingling.

They have now progressed to Horrible fatigue That usually seems to get worse right before I start having a flareup of whatever it is that's going on with me, cognitive problems Like my short-term memory and speech issues like saying the wrong word writing the wrong thing, Slurring my words, Not knowing my left and right Like I used to. I have Sudden laughing attacks,An intention tremor in my hands and sometimes my leg, and Dizziness Especially if I turn around too fast. My leg has given out just standing, and I seem to fall so much more than I used to.

when I get overheated I start getting really weak, my tremors And spasms intensify and I start feeling faint. I get occasionally the feeling on my left side of my back feels like somebody has their hand on my back or something strapped to my back or some some sort of pressure on my back it isn't painful but it Feels like a pressure. At times my legs feel so weak I feel almost like I have the flu I'm not sick at all but that's just the feeling, my legs just feel weak, like they are almost made of Jell-O or somethin.

Could be just positioning but I've never known a time in my life Where I've woke up so many times with a completely paralyzed limb.

I've gone through times where I've gotten really bad pains in odd areas like my arm for my leg and almost feels like a muscle cramp but it's not related to the muscle it feels almost like somebody's poking me with a marker or something. I get very sharp pains in my toes that almost like somebody's to sticking a needle in my toe repeatedly.

And the newest of all symptoms that have been happening are my twitches that started in my eye, I didn't think much of it Until lasted for about three months straight Off and on and then it moved to my upper lid, then beside my nose and then I had it beside my lip, On my lip, my chin, above my eyebrows, under my eyes on my cheek , in my hands (One time one in my hand lasted for three days straight,)I have it in my legs and On my arm( The one on my arm last for two days straight. )

I have some symptoms that are mild 24-7 now, But then I go through times when things are Amplified, And I usually get a whole new something to deal with.

I'm kind of at the point that I need to find out what's going on because it's really starting to affect my daily living, As embarrassing as it is, Simple Things such as taking a shower have become like climbing Mount Everest. In the mornings I have all I can do to talk myself into taking a shower and I find that I must schedule my time wisely because even when I take a cool shower I get so weak I can't finish everything like washing my hair and shaving and whatnot.

Work is difficult because I work as a vet tech, when my hand tremors as I'm trying to draw up a vaccine or dose it makes things twice as difficult (or doing anything fine like that) At times I almost feel like I'm on a dirt road in the car And trying to do all these fine things because things are shaking so much. Or when I'm trying to talk to a coworker or client and I cannot for the life of me say the correct words I feel like they think I'm an idiot. I have to carry a notebook around with me because my short-term memory is so bad and things are so fast-paced there anyway I can't remember my name let alone what I was supposed to do.

My fatigue has limited my ability to keep my house clean because I either can work or can clean the house and most the time I push myself more than I should. Which I know no matter what is not a good thing. When is really bad it's hard to even get through a day at work because I just feel like I'm carrying 1000 pounds on my shoulders and I just can't keep up with anything.

I really want to find out what this is but I just keep going around in circles with the doctors. When I went to the hospital one time the first part of my report says that all my symptoms at the time were consistent with MS but then the neurologists didn't agree, However they were the same neurologists that didn't want to do anything because of my lack of insurance. Then my my regular doctors hear about what's going on and their first thought is ms as well.

I still feel like it may be or be something like ms, Talking to other people with MS, I have not had a spinal mri, And I know some people have lesions only on their spine and no visible lesions in their brain, and some have ms without mri visible lesions. When from what I've read I don't think ruling out ms based on the negative MRI And the shortest Nero exam I've Ever seen, is that the proper way to go. But, I don't know where else to go I finally got a full-time job so I could get on insurance however I cannot afford it still, And all I seem to hear is "well, if you had insurance we could do this and, if you had insurance we could that."

Do you think I should just give up, and deal with things as they come? DOES any of this sound like ms? i feel almost like I have to wait until my leg completely gives out and stays out for anybody to take me seriously.

Thank you for your time if you read all of this, I know it's seriously long and probably has so many typos.
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Re: Should I just give up?

Postby NHE » Tue Jul 23, 2013 4:33 am

Since you're in diagnosis limbo AND have MS like symptoms AND since you work as a veterinarian technician, then it may be possible that you have a flea borne infection. The People's Pharmacy interviewed two doctors that discussed how chronic infection from flea (and tick) borne diseases can mimic autoimmune conditions such as rheumatoid arthritis and others.

Please go to the People's Pharmacy site immediately and download the three interviews with these doctors. The show originally aired on June 15th and the interviews will not be freely available for much longer. ... y-disease/

Right click on the links to the mp3 files and select "Save link target as..." or whatever similar option your browser provides.

In addition, here is a link to their full research paper.
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Re: Should I just give up?

Postby jimmylegs » Tue Jul 23, 2013 6:14 am

hi silver :) sorry to hear you're feeling discouraged :S

glad to hear the magnesium may have helped some. still plenty you can look at going forward.

to start, I don't know if we heard back from you on the following:

if it's nutritional it could be low magnesium, for a variety of reasons (often insufficient dietary intake plus various kinds of stress), prior to starting supplements.

magnesium status is known to be low in ms patients. if you high dose d3 without carefully balancing and timing the magnesium intake, it can drive magnesium levels down still further.

290 mg is below the daily recommended amount and your absorption from supplements depends on the form you are taking. for example magnesium oxide while it contains a high proportion of elemental magnesium, it is an insoluble and therefore poorly absorbed form. as such it can useful as a laxative, but not so much for relaxing muscles.

timing of supplemental intake is also key. if you take your magnesium at the same time as the d3, it can be monopolized by the d3, leaving none to supply the hundreds of other body processes that depend on magnesium.

you can try evaluating your diet for magnesium density, your lifestyle for magnesium depletion (include researching any medication you take for possible effects on magnesium status), ensuring (if you have not already done so) a highly soluble absorbable form of magnesium supplement like magnesium glycinate, and timing your supplemental intake carefully so that you take half of it at the same time as your vitamin d3, and the other half well away from any competition from d3.

are you planning to test for both d3 and magnesium levels?

are you still on.. what was it, 2400IU d3 and 290mg magnesium? did you have your serum d3 and serum magnesium tested in the end? i'd be very interested to see the 'normal' results to evaluate whether they match patients' low normal, or healthy controls high normal.

what nutrient tests did you have besides b12, iima? curious if you've investigated your levels of other suspect nutrients for ms? could be good to have them all optimized and conclusively ruled out as sources of your symptoms. i'd be looking at magnesium levels to start, for efficacy of your regimen, and also your levels and intakes of magnesium cofactors like zinc and b6. vitamin ,b12, d3 and mag supplementation all work better when zinc is optimized, and your resistance to infection would be better also.
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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Re: Should I just give up?

Postby CaliReader » Tue Jul 23, 2013 3:59 pm

I am very sorry to hear things are so rough.

You asked "Do you think I should just give up, and deal with things as they come? ... i feel almost like I have to wait until my leg completely gives out and stays out for anybody to take me seriously."

If your leg gives out, or your eye, or anything disabling that lasts for more than a day, go straight to the nearest emergency room.

You asked, so here is my two cents about taking things as they come.

- If you can take things as they come and also not give up, you will do better. If you can't do anymore right now, you can plan things to do in future. If the people you know won't help you, you can contact other groups who might.

Example. If you are in the US, the new Govt help re paying for health insurance will probably expand your opportunities re doctors in January.

If it were me, I would do these things.

1. I would see what my primary doctor can do about making me feel better now. Ask for generic drugs only.

2. I would wait until next year before asking for more MRI's. Next year I would also get a lumbar puncture.

3. I would call the MS society or other MS group and ask to speak to an MS nurse for advice on how to live with
your symptoms.

I hope very much that NHE's theory is correct, and that these flea borne diseases have a cure.
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Re: Should I just give up?

Postby lyndacarol » Tue Jul 23, 2013 6:47 pm

silverwings87 – I know your symptoms have been occurring for several years and this has been a very difficult time with no definite answers, but I encourage you to grit your teeth and stay tough! Do NOT give up! No doubt, my suggestion comes from my own determination to fight this awful disease of MS. You have not received the diagnosis, but you can join me in my determination to fight whatever problem you face (whether MS or not).

Make a list of your symptoms, discuss them with your PCP, emphasize that your symptoms negatively affect your everyday life (showers, washing your hair, cleaning house, etc.) and your work as a vet tech. Pressure your PCP for a "probable" diagnosis – assuming that you do have MS, I am not sure that neurologists are worth the money (especially if you have no insurance), since they have no "fix" for MS.

Start your own program with an EXTREMELY healthy lifestyle – diet and exercise. First, eliminate processed foods from your diet. Next, remove all trans fats from your diet. Then, remove all artificial sweeteners and even table sugar as much as possible. Add lots of vegetables and some fruits to your diet. Jimmylegs can offer you many suggestions there, if you ask her.

Get plenty of good, restful sleep; work regular exercise into your schedule; soak up 10-20 min. of sunshine per day – if you are in Colorado, do you hike in the outdoors?

A healthy lifestyle can even improve one's mental outlook; get yourself into the best possible physical condition you can – if this is MS, you will need mental and physical fortitude for the fight. All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: "Insulin – Could This Be the Key?"
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