[AnnieB3]

Well, your description on Desert Flower's post makes a lot of sense.

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

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

[Smokey56]

ANNE,
I can sure relate to the many that have fought symptoms for years and Dr's could not come up with an answer - when one has excellent health they truly do not understand the value and its so easy to judge others as lazy or incompetent. Life can have many challenges for sure..
Anyway, B12, well, I took sublinguals for a month or so with little effect. My PCP said it was unlikely I could absorb B12 that way and rec the shots. I bought a book written by a nurse called "Could it be B12? " and it is well written and explains many possible related symptoms. It also rec 3 diff tests need to be run to accurately know what your body is doing in regards to B12 levels.
I am not sure if Thyroid is OK - I have had sooo many blood tests I can't imagine that was overlooked but I will check into it. I do seem to have a lot of nervousness - and at times type almost in a frenzy so its a thought to look into...
I am pretty comfortable with my neuro dr - he is very aggressive and twice he has got on the phone calling other Dr's to get me in immediately for diff tests so I think he realizes the challenges an MG patient can face...
Will also check the celiac testing. Funny but I have noticed hoarseness seems to be a fairly common symptom and allergy's to foods would make sense - I have wondered if swallowing malfunction may leave foods in the throat longer causing inflammation???
So, I am a newby at this and like so many looking for answers and relief...
Thanks for re-posting as I did not want to derail Desert Flowers post for sure -
Best Regards.
Smokey

[AnnieB3]

Oh, you didn't derail anything! I simply wanted to talk about a few things.

You have to give sublingual B12 some time to work. And many doctors do NOT know about sublingual B12 or the many studies that have been done that show it is better than shots. Yeah, you may need both.

The shots are cyanocobalamin, which gets stored in the liver first and then is converted to methylcobalamin so that the body can use it.

Methylcobalamin goes right to work in the blood stream and gets to your tissues so they can use it. The reason you can't get it through food is due to the pernicious anemia attack on the stomach.

Yes, I'm saying your doctor is not necessarily "wrong" but not informed well enough.

You should get copies of your records, if you can. Thyroid disease is so common among MGers. It can be Graves or hypothryoidism (with or without antibodies) or an inflammatory attack on the thyroid.

Did they do a chest CT to look at your thymus gland? Some people with MG have either an enlargement of it or a tumor (more rare).

I think your body needs time to heal. Look into the many ways to make your immune system happy, including enough sleep, whole foods, decreasing stress, etc.

It takes a while to figure all this out, what is this and what is that. MG is all about weakness, not inflammation. So the more you do, the weaker any of your 640 skeletal muscles can get.

Keep asking questions. And give yourself time to adjust to all of this!

Annie

[Smokey56]

Good Day Anne,
The book on B12 goes into pretty deep detail about the diff types of B12 shots and rec the methyl but like you said almost all facilities use the cyan version which is slower...
Had chest CT and everything looked good - no tumors or enlargement so for now that's a bit of a peace of mind.
Breathing has been an issue for most of my life - had many spells of shortness of breath - thought it was all allergies and asthma - last few years though it has become a constant thing and I would notice I was laboring doing simple things. From about age 19 I can remember laying down flat and becoming very short of breath - many times I would have to sit up again - nobody could ever explain it but now I think it may have been an early symptom of muscle weakness as I have read others with the same delima...
I am on 30mg x 3 daily for now - dr wants to increase to 60 but trying to let my stomach issues calm down before jumping up. Been on about 3 plus weeks so not sure how long it takes to reduce gas and indigestion issues? I have noticed better breathing from 30mg so that's a plus
Like many I am hoping its not ALS, my neuro does not think so, comforted a good friend some years back that passed at age 43 from that and it was not pretty...

Have a great day!
Randy