I know I have not been around for a while. I do check in and read posts from time to time. I have a questions that I'm hoping someone might be able to answer. It seems my MG is mostly "under control" However, I am really suffering with Lupus now. The pain in really bad. Does anyone know a good forum for Lupus? I did a search but could not find one comparable to this one Thank you all!!!
Dorothy

Dorothy,

I'm sorry you have been diagnosed with lupus too. It can be a very hard disease to live with, especially since you live in Florida! Stay out of the sun as much as you can.

I could help you a little, given that I spent ten years volunteering my time to the lupus foundation. There's nothing like "talking" to those who have lupus though. Here are a couple of contacts in Florida.

http://hstrial-lupusfoundati.intuitw...m/contact.html

http://www.lupus.org/webmodules/weba...939&zoneid=182

There is a LOT of information on lupus out there. Do you have a rheumatologist who you feel comfortable with? Are they knowledgeable of lupus (some aren't)?

Like any other autoimmune disease, the very best thing you can do is try to keep yourself as healthy as possible. Get regular checkups, eat and sleep well, take sensible supplements (especially vitamin D with calcium) and go in whenever you have ANY new symptom!!! That's so important with lupus. You never know where it will decide to attack your body.

Have you had a urinalysis and/or a chem panel to check your baseline kidney function? Lupus loves to attack the kidneys. And some of the drugs you can take for lupus can be hard on the kidneys.

Have you spoken to your doctor about the pain? With women especially, it's best to keep on top of the pain and not let it go too long. For us, it seems the longer it goes untreated the harder it can be to treat. There are many non-drug alternatives to anti-inflammatories like fish or flax oil, walnuts, etc. Lyprinol is something you may want to discuss with your doctor. Do you have widespread pain or has it localized to specific areas? For some patients, physical therapy does help. Acupuncture too.

I hope you can get hooked up with some lupus patients. Maybe attend a monthly meeting - most chapters have those. I really hope you can find a way to reduce the pain. It is NOT pleasant.

Take it easy and keep in touch.

Annie

Annie:

Thank you SOOOO much for responding! I feel so lost. All my tests for lupus came back positive ANA- anti dna, urine and kidney biopsy. It is such a looong story ( as we all have, lol) but I don't tolerate immunosuppresants. The worst pain is in my feet, ankles and knees. It is much worse at night making it almost impossible to sleep. It is ironic because as you know, I'm limited with MG but the lupus pain stays at bay while I'm moving it gets worse when I stop at night. I can't win!!! I was diagnosed a while ago. I had been having the pain and fatigue. Now the pain seems worse. I just started trying Ultram. It helps and is NON narcotic. I take supplements as you mentioned. I will have to find a support group. I think it's great that you volunteered for the foundation! I tried volunteering for a cancer center recently but they expected a lot of physical work and I could not keep up. I was very disappointed. I haven't worked in so long. I just want to feel "normal again" Thank you for letting me vent! I really appreciate it.
Dorothy

Dorothy, Have you had your B12 checked? If not, please do. Methylcobalamin sublingual tablets go right to work in the bloodstream. Some gets stored in the liver, some is used by the body and the rest is peed out!

Your feet and ankle pain may "only" be lupus but if there is any peripheral nerve component going on, it would definitely help to take B12. I have gotten mine at iherb for over a decade now (there prices are far less expensive than stores). I like the Jarrow brand (5 mg.) but the Source Naturals is good too.

Here's a thought. Maybe bring up having Flovent, an inhaled steroid, to your rheumy. No, you may not have asthma but Flovent is a tolerated steroid and it does go systemic in the body. It may be worth a trial of it. It helps to think outside the box with these conditions.

There are these things called "Boo Boo Buddy" gel packs for kids. I use them on my ankles/feet when my neuropathy flares. They are not too cold, so the chance of getting cold damage to the nerves is low and it helps in order to get you to fall asleep. Some people use Lidocaine patches but that might make your MG worse.

Well, we'll never be "normal" again HOWEVER we can have a new normal. And everyone wants to feel like they are contributing to the world or are useful. Do you have a hobby? Something you could do at home? Some people knit caps for children around the world. There are so many things you could do - take time to think about what you love to do. It will help keep depression at bay and can make you feel more normal. That's why I began, and finished, writing a book. I absolutely needed to do something, even if it took for what seemed like forever to do. It kept my mind off of my health crap!

You should still come here for support when you need it. We all need to connect with people, even if it's over the Internet.

I know how hard lupus can be on patients and their families. Keep pampering yourself and your immune system. Even the smallest amount of stress can flare lupus! Or MG for that matter.

I'm glad you are finding some relief.

Annie

Have you been tested for Celiac Disease or tried a Gluten-Free diet? A GF diet won't "cure" lupus, but it may help relieve some of your symptoms. Here's a great link with links to other sites with lots of good information:

http://neurotalk.psychcentral.com/post8767-2.html

Hope this helps!

Annie:

Thanks again! I give myself monthly B12 injectios as I ALSO have pernious anemia. My level is checked regulary, and has been great! I think somehow you knew that I LOVE the idea of Flovent (never heard of it before) My primary is great going "outside the box" so I think she will definitely be on bored. The links you sent have been very helpful. I will certainly try to attend a meeting. For some reason, I'm having a harder time with this lupus diagnosis than MG. Thanks Annie for your help and listening.
Dorothy

Dorothy, No offense to anyone but B12 shots are archaic. The shots are cyanocobalamin. Cyanocobalamin has to be converted by the liver into methylcobalamin before your body can use it! Methyl-B12 goes to work right away in the body.

Since you have pernicious anemia (PA), you need to take B12 forever. I know that the shots are "paid for" by insurance but taking that B12 on a daily basis will not only help you to heal better but feel better. I take my B12 twice a day (5 mg. at a time). I use the sublingual methyl from Jarrow at iherb.com. The shots were not making my peripheral neuropathy any better and my levels were not climbing up very high.

Besides, the shots are made using cyanide in the "purification" process!

So you've got three autoimmune diseases. I think any one person should be limited to two. That is so not fair. And not that you would want FOUR, but I think Teresa's suggestion of at least being tested for celiac is a great one.

The other thing about pernicious anemia that doctors don't often tell patients is that because of the destruction of the stomach's parietal cells, you don't have the ability to make stomach acid. Did anyone tell you that or what to do about it? I don't have stomach acid but supposedly don't have PA (no antibodies). I take Betaine HCL (Solaray brand) with everything I eat to help digest the food. It's a mild acid, usually made from sugar beets. Keeping the GI tract happy and healthy is very important in keeping the immune system in the best shape possible. A lack of stomach acid is implicated in a lot going wrong, including increased infections, inflammation and GI tract cancer.

I'm glad you like the idea of using Flovent. It might even be good for someone with lupus, since the risk of pleuritis, etc. is greater. My body couldn't tolerate the "regular" steroids but I can handle Flovent (I do have asthma). And there are different strengths of Flovent, so if you have, for example, a lung infection, your doctor could increase it temporarily until it gets better. I hope you have a good pulmonologist, just in case you need one!

Sorry to go on and on but it is so frustrating to have these diseases and then to not have enough help for them. I know doctors are good but sometimes they don't go quite far enough for patients. Not that they have time. I'm glad you have a good doctor.

Annie

Annie:

No offense, ever This is why we are all here - to learn. My B12 levels are really high. My doctor did tell me about not producing acid. She also said this is why sublingual is probably not the best choice. Since my levels are sky high, do you think this is still the issue? I hope you don't mind my asking, but you certianly seem to have done your research. I did not know about the Betaine and certainly will try it. Also cyanide - OMG! Well, about the three autoimmune disease, thank you. Hold on to your hat, I recently had bw because of stomach problems and not being able to tolerate immunosuppresants and now they are telling me maybe crohns! Can you believe it? My stomach is fine when I'm not on immunosuppresants - even with all the mestinon. Thanks for taking the time!

I have my doubts that it's crohns. You have an autoimmune attack on the stomach, due to the PA. Do you have both parietal cell and intrinsic factor antibodies?

What kind of immunosuppressants are you talking about, since they are not all created equally? Steroids reduce the gel coating of the stomach, which leaves you open to more pain and infections. Steroids are antiprostaglandin drugs. Our bodies need prostaglandins, like to ensure that gel coating of the stomach thick and stays healthy!

B12 will ALWAYS be an issue. It's a forever thing for you.

Sublingual B12 is not the same as B12 tablets. B12 tablets are swallowed, which are NOT good for someone with PA. Maybe your doctor didn't know a lot about sublingual tablets. They are absorbed under the tongue and go to work in the bloodstream, bypassing the GI tract. It's the same principle as taking baby aspirin or nitroglycerin, which both go right to work in the bloodstream. Sublingual methyl B12 is the best choice for those with PA or a lack of stomach acid. Yeah, I've done s-loads of research on that one. So has Rose, who was on the gluten forum a lot. At least I think she's still there.

Your B12 levels were low, right? Now they should be high whenever they are checked. That is normal. And you can't get too much B12! Mine are always high. Totally normal when you take B12 daily. Did they check your homocysteine or methylmalonic acid levels too? They can be elevated in a B12 deficiency. My homocysteine level was high (back in 1999).

Look up autoimmune polyglandular (or polyendocrine) syndrome. You may not have this but it's interesting.

http://www.fpnotebook.com/Endo/Adren...SyndrmTypI.htm

http://emedicine.medscape.com/article/124183-overview

I hope doctors will not throw drugs at you without figuring out or sure what is going on first. And I hope you will ask for the celiac antibodies to be checked (gliadin, reticulin, endomysial and tissue transglutaminase).

Adding fish oil or flax or good nuts like walnuts to your diet that contain omega 3's may help with the stomach issue. I take good omega's daily. Before taking Betaine, I had a lot of infections, reactive hypoglycemia from my undigested food "dumping" into my small intestine, etc.

I'm sure you and your doctor can figure all this out. Hang in there. It isn't easy having MG but lupus is a major challenge.

Annie

Annie,

I did have the celiac antibodies done and they said they were fine. I was shocked too! You have given me a lot of good suggestions, and I appreciate it. Like you said, right now the Lupus is what is kicking my butt - so I have to address that. I hope you are doing well right now. Thank you again.
Dorothy