Could it be MS? (Early Signs Questions)

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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lyndacarol
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Re: Could it be MS? (Early Signs Questions)

Post by lyndacarol »

gekco789 wrote:Well I took the kind of B12 that dissolves under your tongue so that it can get into your blood stream. She said wait a month after taking it and then see if my symptoms go away. They did not. She did not retest my vitamin B12 levels at that time. I asked the doctor if I need to take it everyday and she said no that would not make any difference.

When I was first told about my vitamin B12 being low I asked about shots. My doctor told me that most insurance don't cover shots and that they did not even have any of the shots in the office because there is the over the counter dissolve ones that you put under your tongue. I was told that the dissolve tablets work just as good as the shots. But since my symptoms did not go away the doctor is not sure if this has anything to do with vitamin B12 anymore. I am just really tired and ready to have some sort of answer. But I take it one day at a time. Should I just try taking the dissolved kind under my tongue everyday for a week to see if that helps?
The under-the-tongue form of B12 does not work for everyone. And even if it did work for you, a tablet once a month is not enough to correct a B12 deficiency. And it is known that injections work faster than sublinguals.

Since you have long-standing symptoms, low B12, and very short-term treatment (with possibly an ineffectual form), I cannot understand why your doctor would not retest for your vitamin B-12 level.

I believe your doctor is incorrect about insurance not covering shots. Your initial post stated that you feel tired all the time and have no energy; this is a valid reason for vitamin B12 injections, as I understand it; it is a matter of your doctor's office coding the diagnosis and treatment properly. I encourage you to ask your own insurance office. Is it possible that she discourages the idea of injections because her office does not offer the shots?

With the necessary doctor's prescription, you can get a 30 mL multi-dose vial of hydroxocobalamin, months' worth of injections, for about $40!
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Scott1
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Re: Could it be MS? (Early Signs Questions)

Post by Scott1 »

Hi,

Ask your doctor to check your uric acid level. A low level is indicative of a problem with purine synthesis which will impact on ATP and your ability to make energy.
As also for a fasting amino acid test. If you are deficient in any of the nonessential ones it would indicate either a problem with your metabolism or you have an infection that is scavenging the nutrional elements in your diet. Test for mycoplasma.
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gekco789
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Re: Could it be MS? (Early Signs Questions)

Post by gekco789 »

I have an appointment on Wednesday this week (8/26/15) with a third neurologist. Not sure what to think anymore since I have really been tested for everything under the sun. I just hope to one day have a diagnoises so whatever is going on I can take care of it and myself better. Frustation is the name of the game. The only test I have not had yet is a spinal tap. I have just been so weak lately that there is not much I can do beside laying down and being still. I have also lately beening having where my throat will get really dry and then feel like it is numb. A strange sensation like someone is grabbing your throat really hard. I do have asthma but not sure if it is related to that or not. The pain, weakness, and tiredness just don't seem to stop. I try so hard to be a positive person but here in the last week it has been very hard to do that. I will update more once I see the neuro number # 3; maybe lucky Neuro #3? Keeping my fingers cross but not betting my life on it (LOL).
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Re: Could it be MS? (Early Signs Questions)

Post by gekco789 »

Went to a second neurologist and he seems to think that I have fibromalgia but I am still not sure. I had a sleep study done and do not have sleep apena. This is so frustrating and is getting on my last nerve. I do have a moon shaped face and the red/purple stretch marks but had a 24 hour urine test done and blood work done in the past and it came back normal and do not have cushings. I am really out of ideas at this point. It sucks not knowing what is going on. I wish I just knew so I can fight the symptoms better.
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lyndacarol
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Re: Could it be MS? (Early Signs Questions)

Post by lyndacarol »

gekco789 wrote:Went to a second neurologist and he seems to think that I have fibromalgia but I am still not sure. I had a sleep study done and do not have sleep apena. This is so frustrating and is getting on my last nerve. I do have a moon shaped face and the red/purple stretch marks but had a 24 hour urine test done and blood work done in the past and it came back normal and do not have cushings. I am really out of ideas at this point. It sucks not knowing what is going on. I wish I just knew so I can fight the symptoms better.
Since you have had most of the blood tests suggested by the University of Chicago in an investigation of peripheral neuropathy (the name for the numbness/tingling you felt in hands, fingers, feet, and toes): http://peripheralneuropathycenter.uchic ... #bloodtest\

I wonder if your doctor would be willing to order testing for the following nutrients: copper, iron, magnesium, and zinc. Scientists have found that these mineral levels can be greatly lowered by the chemical, "glyphosate," which is the main ingredient in the herbicide widely used on our food crops. Glyphosate interferes with the regulation of vitamin D, as well (which you told us was low).

Glyphosate also negatively affects our organs, such as thyroid and pancreas (your PCOS?) among others; it also destroys the good bacteria in our intestines (Lactobacillus and bifidobacteria). It might be a good idea to add a probiotic, which contains these species of bacteria, to your diet – taking a probiotic might even help a spastic colon.

Since there is no test available in the US to determine the level of glyphosate, I wonder if you would consider your own experiment with an organic diet (to eliminate all sources of glyphosate) – at least a month or two – to see if it would make any change in your symptoms. A healthy diet of organic food would not harm you and might shed some light on the situation. (Be aware that wheat is especially sprayed with glyphosate – I recently began following an organic diet, also; I cannot find a source for organic bread so in order to have bread I have begun making my own with organic flour.)
gekco789
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Re: Could it be MS? (Early Signs Questions)

Post by gekco789 »

Well I went to a third neurologist who believes that I have Firbromaglia but still not sure that is what I have. I have changed medications from gabapentin to Lyric but I am still having most of the same symptoms. The pain is not as bad over all but when it is bad you might as well forget about me doing anything. I have had a sleep study test done and it turned out normal. So I am not sure where to go from here but any suggestions or test that would be helpful are always welcome.
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lyndacarol
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Re: Could it be MS? (Early Signs Questions)

Post by lyndacarol »

gekco789 wrote:Well I went to a third neurologist who believes that I have Firbromaglia but still not sure that is what I have. I have changed medications from gabapentin to Lyric but I am still having most of the same symptoms. The pain is not as bad over all but when it is bad you might as well forget about me doing anything. I have had a sleep study test done and it turned out normal. So I am not sure where to go from here but any suggestions or test that would be helpful are always welcome.
To recap: you have had a serum B12 test and the level was found to be low. You have taken B12 supplements, but are still having the same symptoms.

Since you say that any suggestion is welcome, here is mine: Discuss with your neuro the possibility of having two more blood tests – the homocysteine test and the methylmalonic acid test. Elevated levels for these two tests mean that your B12 level is low. The results of one test (the serum B12) can be misleading. And retesting now after you have taken B12 supplements would certainly yield unreliable results. I would think your neuro would like to confirm your B12 level with these two relatively inexpensive blood tests (Hcy and MMA).

The sublingual B12 supplements may not have raised your blood level of B12; the serum level of B12 should be at least 550 pg/mL; if your neuro or GP is not interested in raising your B12 level, request your GP to refer you to a hematologist. B12 deficiency can cause neurological symptoms.
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Re: Could it be MS? (Early Signs Questions)

Post by trixiehasms »

I take regular B12 injections and they really help for the awful fatigue. I started with once a week, then extended to every two weeks, then three, then a month. I went back to weekly after another flare but my naturopath even recommends daily injections during a flare. Worth a try! Hope you feel better soon!
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