Well, your description on Desert Flower's post makes a lot of sense.
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Well, my reg MD of 8 years told me I should see a shrink as the face pain, balance issues, etc etc must be in my head! So, I got a new Dr and within 30 days he said I had Pernicious Anemia and started B12 shots - immediate improvements! I was having hard time opening left eye, terrible pain on one side of my face etc.
So, I was thinking long term B12 deficiencies had caused all the trouble- as I was feeling a lot better most of last summer. Then winter came and some trouble started to flare again, balance, weakness - by end of day I was so tired I just wanted to lay down. Mind you I have always been an avid outdoors person, worked out etc so this was not normal aging to me...
Went to see a neuro Dr about month ago as neck was killing me, weakness terrible and breathing challenges. He ran many tests and suspected MG - blood tests came back positive so thats where we are at now...
I have had swallowing difficulties all my life and would get very tired chewing food - heck I thought I was normal - thats how everybody felt - right!
The allergy shots have been drug out thinking the face pain was sinus related - that apparently was long term B12 / MG symptoms so like many have said this disease has many faces...
Gotta run - thanks for the kind words!
Smokey
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Well, when I told my doctor of 15 years that I was so tired that I felt sick, she said "There's nothing seriously wrong with you." It would take another year and a half to get diagnosed. I asked her TWICE to get tested before she did it.
Have you tried taking methylcobalamin sublingual B12? When I got diagnosed with my B12 deficiency back in 1999, the shots weren't doing much for me. When I began taking the sublingual B12 a year later, that's when I began to heal. That was backed up with testing results that showed my B12 was barely crawling up with shots only. Then I stopped the shots and do B12 daily now (5-20 mg. twice a day).
It can take as long as you've had the deficiency and nerve damage to get it to heal. I still have some leftover neuropathy in my ankles/feet.
I get my B12 from
www.iherb.com due to the discounts. I like the 5 mg. Jarrow Formulas brand. The Source Naturals brand is good too.
With pernicious anemia, you do NOT have stomach acid. It destroys the parietal cells that produce it. So what you may want to consider is taking Betaine HCL with your foods. I don't have stomach acid and have taken it since 1999. It's a mild acid, usually made from sugar beets. I use the Solaray brand. 650 mg./250 capsules.
It's so important that you consider this because without stomach acid, you can have all sorts of problems like reactive hypoglycemia, increased infections, GI tract inflammation and a higher risk for GI tract/colon cancer. Some studies have shown that you can have an increase in allergies due to a lack of stomach acid too.
And if you haven't gotten tested for celiac disease, that may be a good idea.
How's your thyroid?
Many people with MG have a thyroid issue too.
I have MG and celiac disease. It stinks that more than one autoimmune disease tends to pop up. It might be worth your time to see an immunologist for a consult - like one in private practice.
I hope you have a good neurologist to manage your MG. Is there anything we can help with? There are a lot of smart and kind people here.
I wanted to start a new thread for you, in case your info got lost in the other post. Take care,
Annie