[Pepe]

I have not posted in a while but I do keep up with you all. I am very confused. I was just told that I have pernicious anemia. The symptoms are all very similar to MG, down to difficulty swallowing. Now, of course, I'm wondering if I really have MG. I have not been able to speak to my Neurologist yet. Has anyone had any experience with this? Thanks for any help!

[ras1256]

Hi Pepe,
I looked through your old posts but didn't see anything that mentioned when you were dx'd with MG. What tests were used to give you the dx?

I know one neuro mentioned pernicious anemia as a possible alternate dx for my MG once, so I would be curious if I were you too.

Talk to you soon.

Originally Posted by Pepe

I have not posted in a while but I do keep up with you all. I am very confused. I was just told that I have pernicious anemia. The symptoms are all very similar to MG, down to difficulty swallowing. Now, of course, I'm wondering if I really have MG. I have not been able to speak to my Neurologist yet. Has anyone had any experience with this? Thanks for any help!

[Pepe]

Originally Posted by ras1256

Hi Pepe,
I looked through your old posts but didn't see anything that mentioned when you were dx'd with MG. What tests were used to give you the dx?

I know one neuro mentioned pernicious anemia as a possible alternate dx for my MG once, so I would be curious if I were you too.

Talk to you soon.

Thank you for responding so quickly. I was diagonsed with MG in September 2007 with a single fiber EMG. I had a thymectomy last year that was significantly enlarged and I do respond to mestinon. So you can see where the confusion comes in. Do you have pernicous anemia? Thanks again!

[Maxwell'sMom]

Hi, I have anemia, but mine is cause from kidney disease. I am actually going today for my Iron infusion. I just finished 4 weeks of it, and found out that my iron levels still were too low, so I'm now going for another four weeks.
They checked my b12, and so far it's okay. But they may have you give yourself shots, and will no doubt have you do labs often. Any kind of anemia is no fun. I have to give myself ProCrit injections so that the Iron infusions will absorb into my body.
I didn't think I'd be able to give myself shots, but I've gotten pretty good at it. So you may surprise yourself as well.
Did they say what caused you B12 problem?
I wish you well, and I'm curious as to what they'll do for you.
Love Lizzie

[AnnieB3]

Hi, Pepe. Back in 1997 - 99, I was more and more tired out. After lots of research and seeing docs, I figured out I might have a B12 deficiency. Had to ask twice to get the test. My level was way below normal and was given B12 shots.

I didn't have pernicious anemia but a B12 deficiency due to no stomach acid. Without the acid, I couldn't digest my food well enough and didn't absorb the B12.

Pernicious anemia is yet another autoimmune disease. Antibodies (parietal and/or intrinsic factor) attack the stomach. They attack where the stomach produces stomach acid. People with pernicious anemia usually don't have stomach acid either but you should have a gastroenterologist check to see how much or little is left. If you don't have any stomach acid, then you can take Betaine HCL (over the counter supplement) to help you digest your food.

After my B12 deficiency, I still didn't feel well (weak and short of breath). A couple years later I was diagnosed with MG. It's possible that the long-standing, severe B12 deficiency upset my immune system enough to cause the MG. Who knows.

I started taking Methylcobalamin in 2000 and felt better than when I was on the shots. It's a tablet that you put under your tongue and it goes to work right away in the bloodstream. For people with pernicious anemia, it is impossible to absorb B12 through the GI tract. I take 5 mg (5000 mcg) of Methylcobalamin daily. If you have pernicious anemia, you need to take B12 daily - and folic acid - for the rest of your life.

I need to explain the B12/folic acid thing. If you take folic acid only, you can get a B12 def. If you take B12 only, you can get a folic acid deficiency. It had to do with the biochemical process of those vitamins in the body. Sorry, I forget to explain things sometimes.

It takes about as long to recover from a B12 deficiency as you've had it. Did you have numbness and/or tingling in your hands, feet/ankles or face?

Pernicous anemia (PA) affects the nerves, which can affect the muscles. MG affects the muscles (neuromuscular junction). It can be confusing but a good neuro can tell the difference. PA does not cause fatigable weakness.

If you had MG antibodies and then had PA antibodies, it just means you now have two autoimmune diseases and may get more in your lifetime. Though it doesn't mean that you will!!!!

Just have a good discussion with your doctors about all this. Make them explain it to you. Have them give you handouts if they have them. They should give you a complete treatment plan (like B12 shots versus taking sublingual B12). You do need treatment DAILY for the rest of your life for the PA.

I hope this helps you out.

Annie

[ras1256]

My blood work is still pending. I don't believe I do have PA, (my first B12 was ok, but I was taking over the counter B and my neuro has reordered the test along with many others) but we will see. I was dx'd MG in 2004, but my dx has come into question again. I have secondary issues going on so they are looking at everything on me again. I too respond to Mestinon.

Annie is much more knowlegeable in this area (as well as lots of others), so I'm sure her post has answered most of your questions. I'll just reiterate that you should write down all your questions and have your doc answer them for you.

Best of luck to you.

Originally Posted by Pepe

Thank you for responding so quickly. I was diagonsed with MG in September 2007 with a single fiber EMG. I had a thymectomy last year that was significantly enlarged and I do respond to mestinon. So you can see where the confusion comes in. Do you have pernicous anemia? Thanks again!

[Pepe]

Originally Posted by AnnieB3

Hi, Pepe. Back in 1997 - 99, I was more and more tired out. After lots of research and seeing docs, I figured out I might have a B12 deficiency. Had to ask twice to get the test. My level was way below normal and was given B12 shots.

I didn't have pernicious anemia but a B12 deficiency due to no stomach acid. Without the acid, I couldn't digest my food well enough and didn't absorb the B12.

Pernicious anemia is yet another autoimmune disease. Antibodies (parietal and/or intrinsic factor) attack the stomach. They attack where the stomach produces stomach acid. People with pernicious anemia usually don't have stomach acid either but you should have a gastroenterologist check to see how much or little is left. If you don't have any stomach acid, then you can take Betaine HCL (over the counter supplement) to help you digest your food.

After my B12 deficiency, I still didn't feel well (weak and short of breath). A couple years later I was diagnosed with MG. It's possible that the long-standing, severe B12 deficiency upset my immune system enough to cause the MG. Who knows.

I started taking Methylcobalamin in 2000 and felt better than when I was on the shots. It's a tablet that you put under your tongue and it goes to work right away in the bloodstream. For people with pernicious anemia, it is impossible to absorb B12 through the GI tract. I take 5 mg (5000 mcg) of Methylcobalamin daily. If you have pernicious anemia, you need to take B12 daily - and folic acid - for the rest of your life.

I need to explain the B12/folic acid thing. If you take folic acid only, you can get a B12 def. If you take B12 only, you can get a folic acid deficiency. It had to do with the biochemical process of those vitamins in the body. Sorry, I forget to explain things sometimes.

It takes about as long to recover from a B12 deficiency as you've had it. Did you have numbness and/or tingling in your hands, feet/ankles or face?

Pernicous anemia (PA) affects the nerves, which can affect the muscles. MG affects the muscles (neuromuscular junction). It can be confusing but a good neuro can tell the difference. PA does not cause fatigable weakness.

If you had MG antibodies and then had PA antibodies, it just means you now have two autoimmune diseases and may get more in your lifetime. Though it doesn't mean that you will!!!!

Just have a good discussion with your doctors about all this. Make them explain it to you. Have them give you handouts if they have them. They should give you a complete treatment plan (like B12 shots versus taking sublingual B12). You do need treatment DAILY for the rest of your life for the PA.

I hope this helps you out.

Annie

Annie

Thank you for taking so much of your time to respond. I appreciate it. My primary did explain a lot. She has started me on B12 shots already and explained I wont absorb anything by mouth that is why I need the shots. I was definitely antibody postive and it was very high for PA. My confusion is and I guess I'm just hoping that could it have been PA all along and not MG??? I've been zero negative for MG diagosed with a single fiber EMG, VERY enlarged thymus, that was removed and I respond to mestinon? I guess I will have to wait to see my neurologist. Thanks again for your help Annie, You have been great! Take care of yourself!

[Pepe]

Originally Posted by Maxwell'sMom

Hi, I have anemia, but mine is cause from kidney disease. I am actually going today for my Iron infusion. I just finished 4 weeks of it, and found out that my iron levels still were too low, so I'm now going for another four weeks.
They checked my b12, and so far it's okay. But they may have you give yourself shots, and will no doubt have you do labs often. Any kind of anemia is no fun. I have to give myself ProCrit injections so that the Iron infusions will absorb into my body.
I didn't think I'd be able to give myself shots, but I've gotten pretty good at it. So you may surprise yourself as well.
Did they say what caused you B12 problem?
I wish you well, and I'm curious as to what they'll do for you.
Love Lizzie

Hi! Thanks for responding. Yes they have started me on B12 shots already. Its just confusing because the symptoms of pernicious anemia and MG are almost exactly the same and I can't help but wonder if it has been a wrong diagnosis. I guess I wont know until I go back to my neurologist. I was antibody positive for pernicious anemia but negative for MG and diagosed with a single fiber emg, plus a very enlarge thymus that was removed. Oh well, thanks again. I do hope that you are feeling better as well. I will keep in touch and hope that you do the same. Take care.

[Maxwell'sMom]

Hi, If you had the SFEMG, and it showed MG, I'm thinking that you Do have MG, and now have another Autoimmune disease. Which is Very common. Auto-Immune Diseases like to cluster together, chances are, if you have One, you do have others. Whether or not a person ever finds out what they are, is another story all together. But it is true, if you have one, others are probably lurking.
I suspect that this is what is happening to you as well. I'm Narcoleptic, with Cataplexy, and it can mimic MG as well. Sudden loss of muscles..etc.. Many experts believe Narcolepsy is an Auto Immune disease, so it would make sense that I have others.
I have to tell you, every time I have to see a new specialist for something, they want to retest me for everything, as it is hard for them to believe i have so many rare things going on. I'm like, look, if you can prove to me, that I don't, by all means, please, go a head, test away. But it always turns out the same. They come in with this look on their faces, and tell me, as though, I've never heard it before.
I am getting to the point, that I don't want anymore retesting, as there is just so many times a person can go through the same test just to appease a doctor. On the other hand, it can be a pain to have rare disease, as there are some doctors who want me as a patient to further their careers. I've learned to spot them not.

Annie, I just read about you and your B12 problems, I didn't see that when I asked you to talk about that on the spinal cord thread...oops..

Hope you'll be feeling better soon.
Best of Wishes
Love Lizzie