NeuroTalk Support Groups - Update on my current status: Questions

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- - Update on my current status: Questions (https://www.neurotalk.org/peripheral-neuropathy/218141-update-current-status-questions.html)

Quote:

Originally Posted by mrsD (Post 1132844)

I notice a few things... but really I cannot comment on everything.

Your MCV is just almost out of range. That indicates poor B12 status.

Your B12 is marginal, and you could try 1 mg a day of methycobalamin for a while and see if that helps. 400pg/ml is the new low and you are hovering over that. If you were on the way down when that test was done, you could be below it now.

Your white cells are quite low. B12 can help that a bit, but also it might indicate that your are fighting some kind of virus. White counts may go down if you have a viral illness. (your EBV titres were elevated).

The TSH of 3.31 is normal on a the old scale of .1- 5.0..but the new scale you would be just out of range and mildly hypo as the new scale ends at 3.0. Not all doctors use the new scale however.

You might think about getting a DNA test for methylation capability. Some of our posters here have done that and all of them showed genetic errors. I am beginning to think when people show up here with stubborn symptoms and a genetic panel would be helpful. 23andme.com offers this for $99.
The FDA will not let them "evaluate" the results but they do give you the results so you can look them up yourself.

Thank you so much for taking the time to look through my labs and offering this advice. All these are good points, and I will look into all concerns you have even more. I have been on B12 injections, but sparse. I am getting injections every two weeks, at 1ml. I have been getting these for two months (4 injections in). I am also taking 1000 mcg of oral B12 daily (have been doing this for one month). Sorry I failed to mention this before. I know it takes time to see the benefits, so I am not sure if I have been supplementing long enough. Thoughts? I will look into ordering this test.

If your levels were tested while you were taking B12 in any form, the results could be falsely elevated and not accurate. No shots for at least 3 days before, or oral... and 7 days would even be better.

When using the oral... make sure it is on an empty stomach with no food for an hour after. Oral is not passively absorbed well when food is present.

Quote:

Originally Posted by Susanne C. (Post 1132853)

Have you decided that this isn't hereditary neuropathy despite the family background? Trouble with stairs and muscle weakness are prime symptoms, and fatigue naturally follows from trying to perform the same tasks with weakened muscles.

Thanks for this information. The hereditary component has def. not been ruled out. I FINALLY got an appointment to a neurologist!! Unfortunately, it is not until April 27, but at least I know it is going to happen. I am hoping that he strongly considers my family history. I also have DDD. I had back surgery at 19. And the pattern you describe is EXACTLY to the T on how I feel. When I finally have the energy to do things, I do a lot of things around the house. I even pushed myself to vacuum and run a couple errands, and then what do you know? By that night or the next day my weakness sets in. SMALL things such as holding the phone up to my ear causes extreme weakness. It feels so muscular, almost like MGers describe their symptoms. And once I rest for a couple days, I feel like I can do things again, then the pattern repeats itself.

I have a strong gut feeling that my health issues are hereditary. I am otherwise so healthy and young, eat well, exercise. It is a hard pill to swollow, dealing with this at such a young age. And my profession, wildlife biology, is very physical! If this is something chronic, how will I manage my career? Trying not to go there, but I just know that physically I cannot perform my physically demanding job. I am lucky for the meantime that I have a lot of computer work to do dealing with data and don't have to be outside working. Most days it is hard to compute as well. Within an hour my hand will go numb or my arm and elbows are burning.

I am a strong person, and I know that so many people on here struggle way worse than I do, so I hate to sound whiny. I just pray that some answers come my way soon. I also pray for all the others in similar situations. :grouphug:

Quote:

Originally Posted by mrsD (Post 1132865)

I was not supplementing orally or getting injections when the test was ran. It was after the testing when we started the injections and I started taking the B12 orally. Because I read so much about the B12 and knew my levels were moderately low, I wanted to see if it would help to incorporate more B12. I have been taking the B12 on an empty stomach, for the most part.