Tired and unsure....

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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Traci77
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Tired and unsure....

Post by Traci77 »

Hi everyone, I'll try and be as brief as possible. Any advice or input is greatly appreciated.
Rewind to about 5-6 years ago. I had "eye aches". It felt like a headache in my eye and numbness in my hands. I went to the eye doctor who sent me for an MRI because he suspected MS. My MRI showed lesions so he sent me to a neurologist. The neurologist said yes I have lesions but they are old and does not think I have MS.
Fast forward to about a year and a half ago....FATIGUE unlike anything I've ever felt! Night sweats and horrible back and rib pain! I had xrays and a cat scan of my back and chest that were completely normal. Then they thought possibly a kidney stone so they did an ultrasound of my kidneys. No stone, but i found out I have chronic kidney disease. But they said that is not causing my pain. pain may last 3 days or 3 hours....
Now a few months ago I started tripping. Not falling but I would tell myself to pick up my foot (right leg only) last week I started feeling vibrations in the right leg. Like a cell phone. I went to my doctor yesterday he said I have severe inflammation in my body but doesn't know from where. He just plainly said " you have classic symptoms of MS you need to see a neurologist. I have not made my appointment yet. I'm confused because i was told 6 years ago I didn't have it? Please let me know your thoughts....
ElliotB
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Re: Tired and unsure....

Post by ElliotB »

Follow your doctor's advice. Go see a Neurologist that specialized in MS.

Just because you did not have it six years ago, does not mean you may not have it now.

Good luck. Hope you feel better soon.
younglady

Re: Tired and unsure....

Post by younglady »

It could still be MS. Time changes the diagnostic rules - and with lesions, it still could be. Definitely see a new neurologist.
Traci77
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Re: Tired and unsure....

Post by Traci77 »

Yes, I am going to make an appointment. I'm just frustrated. I've felt bad for a couple years now but no one knows why. The pain in my ribs and back and the fatigue are the things that bother me most. Does anyone else have this kind of pain and fatigue?
Traci77
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Re: Tired and unsure....

Post by Traci77 »

Also, what else could cause lesions?
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jimmylegs
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Re: Tired and unsure....

Post by jimmylegs »

hi traci and welcome. sorry to hear you're feeling tired and frustrated.

not the most comforting fact here, but many different things can cause many different kinds of lesions.

may i ask if any of your docs have ever recommended or referred you to any kind of dietitian or nutritionist as part of your investigations? if not, that could be one avenue to consider exploring. if you can't get a referral, it does take some effort but it is possible to make a start on that side of things, independently and in parallel to the work your docs are doing. there are quite a few lifestyle issues that are known to be associated with the typical ms patient, and they are more often than not glossed over or evaluated poorly in the mainstream.

can you tell us anything about your day to day dietary preferences, lifestyle, family medical history, other seemingly unrelated health issues you may have experienced in the past, history of infection, any long term use of over the counter or prescription meds, even antacids or birth control, etc etc etc? when at your best, where do you sit on the spectrum of active to sedentary? if you interested in doing some independent work to find out what is going on, all these things can help provide insight.
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Traci77
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Re: Tired and unsure....

Post by Traci77 »

Im 38 married with 2 children, spinal tumor when i was 13. Tonsils and adenoids removed. Gallbladder, mutiple female surgeries. Hysterectomy at 26. I take Diovan, estrodiol, and zantac daily. My b12 has always been good but i have had a very low vitamin D. I had bacterial meningitis not long after my hysterectomy was in the hospital for almost a month. My diet is okay (could be better) I love all vegetables and eat alot of them. Im not overweight.
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jimmylegs
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Re: Tired and unsure....

Post by jimmylegs »

ok that's a great start on the info.

possibly of interest: http://www.lef.org/Magazine/2006/3/report_drugs/Page-02
THE “SARTANS” (Micardis HCT®, Diovan HCT®)
The sartan drugs (including candesartan, irbesartan, losartan, telmisartan, and valsartan) are used to reduce elevated blood pressure. All are used in conjunction with hydrochlorothiazide, a diuretic.
Which Nutrients Are Robbed
Taking these medicines may deplete your supply of, increase your need for, or interfere with the activity of:
magnesium
phosphorus
potassium
sodium
zinc
coenzyme Q10

RANITIDINE (Zantac®)
Ranitidine is used to treat duodenal and gastric ulcers, gastro-esophageal reflux disease (GERD), esophagitis, and related ailments by inhibiting the production of stomach acid.
Which Nutrients Are Robbed
Taking this medicine may deplete your supply of, increase your need for, or interfere with the activity of:
thiamin
folic acid
vitamin B12
vitamin D
calcium
iron
zinc

many of the nutrients listed are also low- to mid-normal in ms patients (vs mid to high normal in healthy controls). to my mind magnesium, zinc, thiamin, b12, vit D3 stand out as ones to pay particular attention to in ms specifically, and chronic illness in general.

do you recall what your actual b12 level was by chance? levels can get really pretty poor before any red flags go up. have you ever had bloodwork done for serum magnesium, zinc, or b1? have you got a serum ferritin level in your records? also curious if you have supplemented or are supplementing D3 since getting that low result?

if you don't have this info, i wonder if the docs would consider running a test or two to ensure your levels are topped up, given your medication scenario.

in the immediate term, one thing you can do is run over your day to day diet to see if you are meeting (or in your case, necessarily exceeding) recommended daily amounts for essential vitamins and minerals. keeping in mind that the RDIs are sometimes on the low side anyway, and that you might well need even more.

to keep things simple, you can just start by going through your daily food routine and tallying up what you eat against this list of healthy food choices. i'll include lists here for iron and magnesium, since you mention that you are tired.

healthy iron sources: http://www.whfoods.com/genpage.php?tnam ... #foodchart
healthy magnesium sources: http://www.whfoods.com/genpage.php?tnam ... #foodchart

i'll be interested to hear how many mgs of iron and how many mgs of magnesium you estimate you are getting daily from healthy food sources (if you feel like going over those lists, and sharing what you learn, that is!).

edit: forgot to mention, you can run over your daily food and fluid routine to check pro and anti inflammatory balance:
http://inflammationfactor.com/look-up-if-ratings/
when you feel bad, aim for a daily food score of at least +100 on the anti-inflammatory end of the spectrum :)
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Traci77
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Re: Tired and unsure....

Post by Traci77 »

My blood work from last week said my b12 level was 292 and in normal range. However, my vitamin D was very low at 18?
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lyndacarol
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Re: Tired and unsure....

Post by lyndacarol »

Traci77 wrote:My blood work from last week said my b12 level was 292 and in normal range. However, my vitamin D was very low at 18?
I assume your serum B12 result was 292 pg/mL. According to the book and authors mentioned below, your test result is in the "gray zone" and considered to be a deficiency by many experts. In my opinion, your situation should be investigated more thoroughly. The serum B12 test alone is not adequate to determine a deficiency. It is often inaccurate; even taking a B12 supplement before testing can skew the results (By the way, medications – even like Zantac – can block B12 absorption.). Request that your doctor order a serum homocysteine test and a serum (or urinary, considered more accurate) methylmalonic acid test also.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:
There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.
Last edited by lyndacarol on Mon Jan 26, 2015 6:01 pm, edited 1 time in total.
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lyndacarol
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Re: Tired and unsure....

Post by lyndacarol »

Traci77 wrote:Also, what else could cause lesions?
A B12 deficiency, among many other conditions.
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jimmylegs
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Re: Tired and unsure....

Post by jimmylegs »

hi traci, 292 won't flag deficiency whether it's in pmol/L or pg/ml. i've been targeting at least 500 pmol/l for b12 for probably close to a decade now, even though the actual recommendation i was working from was only 500 pg/ml (which is more like 370 pmol/l).

i'm still curious if you have had or can expect to have any luck regarding some other tests - especially for the nutrients that might be affected by your medication. also interested to see whether you go through your diet for iron and magnesium. low mag intakes and associated low serum mag would be consistent with low d3

so late! time to sleep *yawn* sooooo tired
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