Nanc, Boy, do I have questions!

First, you do NOT have to have B12 injections. You can take sublingual methylcobalamin daily, along with folic acid. HOWEVER, if your doctors have not tested you for the MTHFR mutation, they should. If you have it, depending upon if you have one or two copies and what gene, that will depend upon what you supplement with. It's a common mutation, and can affect what type of B12 you can absorb/use.

Are the B12 shots you're being given cyanocobalamin? If so, and you have the MTHFR, you might not be getting any B12 to your tissues right now!

Lupus waxes and wanes, as do the blood tests. FYI. Did a rheumatologist test you? Do you have copies of your labs?

You should find a dermatologist at a University. Make an appt. and discuss the rash. Develop a rash and get a biopsy. There is a lot they can tell by doing that! And they might want to do an immunofluorescent test to see if it is subcutaneous lupus. AND they might want to rerun the lupus tests. SCLE is not as easy to diagnose, that's why you need a dermatologist. Did they do the Anti-Ro antibody test?

Do you mean to say that you have a gynecologist who is also a urologist? They're two completely different specialties. I hope you don't have a gyno acting like a uro!! Not ethical.

Have you been evaluated by an endocrinologist? A low potassium would prompt me to see one. Or do you know why it's low?

Acupuncture is not the same situation as an injectable needle. At least research it. It might sound counterintuitive, but it helps to realign the abnormal nerve reaction.

I cannot stress enough that you need to have the MTHFR test. Have they tested your homocysteine or methylmalonic acid? Either or both can be increased if B12 is not making it to your tissues.

And since you are 47, you might be running low on stomach acid. It is thought that many allergies occur due to undigested food/proteins. The body doesn't recognize the proteins that aren't broken down and might see them as invaders. I haven't had any more since figuring out that I had no stomach acid for along time (I'm 55).

Undigested food basically rots in the large intestine, creating inflammation, etc. and can lead to a leaky gut, causing even more immune problems.

I suspect why, but why a low oxalate diet? Did they give a specific reason? Have you gotten kidney stones?

Sorry for the onslaught, but doctoring is about how you think about what's going on, and questions are very helpful.

I really hope you get more answers soon!

Annie

I would also ask for your thyroid to be tested. A lot of people with MG and RSD have untreated thyroid issue. I did. I had a partial thyroidectomy a few years before the onset of RSD due to nodules (Hashimotos thyroiditis, another autoimmune issue). I was never put on supplement TSH. Simultaneously with the MG diagnosis, I was diagnosed with hypothyroidism and put on synthroid.

Try not to get overwhelmed. MG is manageable but it does take lifestyle accommodations but you probably are well acquainted having to manage your life around the RSD. Lupus is also common with MGers and anemia (pernicious).

I agree with Annie that you should have your Vitamin D, B12, TSH, T3, T4, ANA as well as CBC with differential and a Chem 20 panel. Stay away from anything with Magnesium, it makes MG worse.

I have MG, RSD (under control), hypothyroidism, anemia and another autoimmune issue not labelled yet. All these disease separately cause muscle weakness. Having them together makes me even weaker. You often need to get them all under control to see dramatic improvement. It is hard for me to figure out sometimes if it is MG weakness or hypothyroid or am I anemic again.

Keep us posted and good luck
kathie

Hi Kathie!
I have had my thyroid tested numerous times, the last time was fairly recent. Looks like I may need to talk to my dr about lupus again...

I will go back and look at my last couple of blood work reports to see what all was checked. Thanks for the tip on magnesium. I have a big bottle of it that a neurologist recommended that I try for my migraines. I had my PCP check my magnesium levels and they were fine so I didn't take it. It is apparently a bladder irritant, so not too good for IC. There are actually a lot of vitamins and supplements not good to IC either.

Thanks for the reassurance, I am getting a little overwhelmed. I will be happy when the SFEMG is over and I know for sure about MG. My RSD is out of control and has been for quite some time. My IC is awful right now, last week and this week have been especially bad. My urogyno thinks that if we can get my RSD a little better controlled then maybe one of the IC treatments would help me more. Did I mention that I now have RSD down there? It is taking over I am glad yours is under control I am trying to find a new pain management dr and I need a new neurologist (the neuro ophthalmologist is the one ordering these EMG's and my PCP sent me to him).

Thanks for all the info and I will definitely keep you posted!
Nanc

I know what you mean about RSD and needles. I was very nervous when they did the emg and was afraid it would kick off the RSD again. I had to keep my leg elevated for a day and take it easy. I know the sensations that proceeds the RSD pain. If I stop everything, rest, get my leg elevated, takes something to reduce the inflammation and do no activity, I can overt the onset. I still do not want anyone to touch or do anything to my lower left leg. I do not even like to touch it myself or wear socks. I only wear clogs so it is easy to get shoes on and off without having to move or touch my foot. The RSD moved to my backs and hips while I was pregnant, so I understand some of your pain. It took years for my body to recover from my pregnancy. Aqua therapy was the only thing I could do. It is still the only exercise/activity I am able to do with my foot.

You have the strength to get through this. I have to say there is no pain like RSD pain, nothing compares. And if you have managed that, you have the strength to handle MG if that what it turns out to be. Stay calm and try not to stress. I will be sending a few prayers your way.

kathie

Yeah, i was really concerned before having that last EMG. It did cause me to flare up, especially in my face. Did I tell you that I have RSD in my face, hands, feet, shoulders, left arm and left leg...oh, and my girly parts? You are so right, no pain is like RSD pain. I can only wear certain shoes (slip ons) and certain socks...but not always. I bet being pregnant with RSD was rough.

I'd say that 23 years with RSD and all of the other things I have dealt with along the way has toughened me up. Thanks for all the info and support, it helps a lot. Also, thanks for the prayers!
Nanc

Nanc, Thanks for the answers!

I hope this article helps to explain the MTHFR mutation. It's like having a kink in the biochemical pathway of B12. If you don't get the right sort of treatment, you continue to be B12 deficient.

http://mthfr.net/mthfr-c677t-mutatio...ol/2012/02/24/

The sun causing clogged pores? Time to find a better, more knowledgeable dermatologist AND rheumatologist. It seems that you have some sort of overriding "itis" and a cause should be found, as well as solutions (i.e., low oxalate diet).

BTW, They don't know what caused my reaction to the sun, but they thought it might be polymorphous light eruption. The only way to determine what it might be is to have a biopsy of the rash.

Do you have copies of the lupus labs? If not, get them and check to make sure Anti-Ro was done.

I have allergies, too, Nanc, but many supplements are free of most allergens. Was the sublingual B12 you tried methylcobalamin? Did you try a different brand (such as Jarrow)?

Please don't be overwhelmed! I'm sorry if I contributed to that. You have a lot going on, and I certainly know what that's like. Just take one thing at a time.

Did you go gluten free? If not, see if your doc can find someone (maybe ARUP labs) who still does the Reticulin antibody.

I'm really sorry you are so limited in what you can do. I totally get that. It's very frustrating to have a body that dictates your life! I hope you will get answers soon.


Annie

Thanks for the link, I will look at it tomorrow when my vision will hopefully be a little better than it is at this moment.

I agree about the drs, but at the moment I am focusing on finding a new pain management dr and a neurologist. Good drs are so hard to find. I have had the rashes covering both arms for several years...hair follicles??? Come on!

I don't think I have a copy of lupus labs, I will have to look thru my records and ask my PCP if I don't.

You know, I cannot remember the sublingual B12 that I tried, been a while. I am super sensitive to pretty much everything I take, or try to take. This makes it a huge challenge for the drs trying to treat me...for anything. You should see the medication allergy list I carry with me...

I went 100% gluten free around 4-5 years ago. I was tested so many times for celiac. The last GI dr I saw was after I went GF, he said he couldn't do a biopsy at that point because I was already GF, and the biopsy is not 100% accurate anyway. My PCP and I decided to try it and it made a huge difference!

Don't worry, you have not overwhelmed me. You have given me a lot to think about and talk to my dr about. I just have moments when it all catches up to me and today was one of them...very high pain levels too!

It is hard for people to understand, but yes, I am limited...very limited in what I can do. Would like to try water therapy, but have that transportation issue.

Well, I need to try to sleep a bit.
Thanks for everything!
Nanc

And my eyes were buggy from having an eye appt. today. And obviously my brain, too, because I forgot something.

When nerves are damaged from a B12 deficiency, and they encounter B12, it's not necessarily going to pleasant.

As nerves heal, they can HURT. Go to the peripheral neuropathy forum here and talk to those guys about the process of healing peripheral nerves. Nerve sensations can be anywhere from paralyzed (can't feel anything) to hypersensitive (nerves overstimulated) to numbness to pain, etc.

So perhaps the "pain" or headache you felt was simply the brain responding to having something it needs.

Annie

Hi Annie!
I have been getting B12 injections for several years now. My PCP checks all my levels regularly. My B12 will go up and we will skip a month or two and it will drop. At last check it was in the middle of the range. I really do not think this headache was related to my B12 levels as it was more that a month since my last injection and I know my level is ok at the moment, but some others might be related. Definitely something to think about and pay closer attention to. I will check out the peripheral neuropathy forum, thanks for the tip.

Nanc

Nanc, I think there was a misunderstanding.

You said: I tried sublingial B and they gave me an instant bad headache.

I'll try to be more clear.

If you have the MTHFR mutation, cyanocobalamin shots are doing nothing for you. Your body can't use it. They are not HEALING your nerves and other tissues. B12 is stored in the liver. The cyano is probably being stored in your liver but not helping your tissues.

Cyano needs to be converted by the liver into methyl before it is "sent out" and is used by your body.

That's why I thought you could either have a MTHFR issue or your liver isn't converting cyano to methyl.

And that is why I wondered if the methyl B12 you took caused a headache, due to your body finally getting the B12 it needs to the tissues and causing healing, which can come across as pain.

Is that more clear? I hope so!

Annie