Yikes! Ange! I really hope there is a mistake with the bill. Like another saying goes, you can't squeeze blood out of a turnip.

I'm sorry things have been so rough for you. That's way way too much time in the hospital. I hope someone here can give you some insight on different causes of flare up.

Keep us posted.
Cathi

You poor thing. Don't let the medical bills bother you (easier said than done) just pay what you can each month. No debtor's prison anymore. Your focus should be on rest and healing. I know this didn't cause your flare, but I would like to warn others to be wary of this treatment. I have severe iron defficiency and they started the IV InFed treatments on me. They pushed it way too fast. I felt my legs going as soon as I got up from the chair. The nurse is asking if I'm OK and I knew I had to get home and take some mestinon quickly so I ran out telling her to read my chart. By the time I got home my left eye was completely closed and the right eye was not far from it. My husband thought that I had a stroke because it looked like the muscles on my face were sliding off. It was awful. I took a mestinon and slept and slept. I probably should have gone to the hospital because my throat hurt and I was having trouble breathing. The symptoms were gone in two days and I was back to feeling normal besides the regular InFed side effects. Never again.

When I was still symptomatic daily I had a real craving for apple juice, it tasted so good. I started to have problems with vision and my legs going out; did some research and found out that fluoride and pesticides are bad for us. Most of your fruit juices have fluoride so we bought a juicer. Apples, if not organic, are one of our most pesticide laden fruits.

I hope you feel better and find some peace today, Kim

Wow, Kim, thanks for that info. My docs have mentioned iron infusion to treat my anemia and I had no idea. The reaction sounds similar to what I experience anytime they use an iodine based contrast.
Cathi

Cathi, I don't know which was worse the MG flare or the InFed side effects. The InFed side effects lasted a week, lots of vomiting, diarrhea and severe muscle spasms and the worst headache of my life. As I was checking out the week after the infusion the lady at the desk wanted to know if I was getting my infusion and I told her never again because of my reaction. This woman is healthy and had a severe reaction also. There is a 25% chance of anaphalyctic shock with this treatment. I'm going to try a good liquid iron supplement now.

Wow Kim your reaction to the intravenous iron sounds horrid and really scary! I have also had IV iron before but I had something called venafer which is apparently less likely to cause illness. They also gave me a minute test dose before beginning the infusion to see that I didn't have any reaction. They did say that there are 2 different kinds of infusions and that the other one was not well tolerated by most patients. Maybe that was the one you had? I know that after my infusion I had 10 weeks of relative health and a renewed vigour which I thought I had totally lost. I'm so sorry you had such an awful experience with something which should potentially have made things better! Hope the oral syrup helps you! We really don't need anaemia to make us even more exhausted than we are already! After reading your post I'm grateful that this time they decided to go with a blood transfusion instead of the iron. Eeck! Thanks for sharing ur experience.

Ange

Wow. I'm really not on board with the iron infusion. I've had an anaphylactic reaction in the past and never want to do that again. I'll write down those names in case I need that information in the future. I had blood transfusions in the hospital. I went into surgery anemic and came out worse. The doc has had me taking double iron supplements for several months and my last bloodwork showed I have eeked back up over the edge into normal. That's where I'd like to stay.
So, is anemia a common problem for myasthenics?

Would be intersting to hear what the others say Cathi. I always thought mine was as a result of the repeated plasma exchanges and chronic blood loss but perhaps there is something more to it?

I'm a complicated one; I have iron defficiency but no anemia because of the polycythemia rubra vera-too many red blood cells. I have been receiving phlebotomies for this condition, but they went to far and I'm iron defficient now. They want you to be a little defficient but not severely and I'm bottomed out. I have many, many diagnoses. You just gotta keep your chin up and learn as much as you can. Trust me, I appreciate my good days. lol The high dosage of prednisone caused me to have 2 cycles/month and I think that let to the defficiency also. They want to run tests and scopes to see if I'm bleeding internally, but I think things will straighten themselves out once the prednisone is completely out of my system. I didn't know that it could affect your body up to one year after getting off of it. Yikes.

O flip Kim how confusing!! It seems so many of us have more than one auto-immune condition and it just confuses the whole picture. Is your polycythemia auto-immune based? I have anaemia from the iron deficiency and seem now to have developed some clotting abnormality which they query is as a result of auto-immune vasculitis. What a maze these diseases create and like you say, the treatments sometimes just mess things up further and have long lasting side effects. I really hope your body soon manages to get rid of all the residual steroid effects and that you can get your iron levels back up again. Do you by any chance know of symptoms other than the anaemia caused by iron deficiency? You would be the perfect person to answer that question. I tend to put all my symptoms down to my MG but sometimes it just doesn't make perfect sense? Hope you experiencing better days!! Hugs
Ange

They polycythemia is a rare blood cancer and I have lived 3 out of the 10 year life expectancy. I don't go by that stuff anyway. I start daily chemo next year or so they (hemo) think.

Extreme fatigue
Pale skin
Weakness
Shortness of breath
Headache
Dizziness or lightheadedness
Cold hands and feet
Irritability
Inflammation or soreness of your tongue
Increased likelihood of infections
Brittle nails
Irregular heartbeat (arrhythmia)
Unusual cravings for non-nutritive substances, such as ice, dirt or pure starch
Poor appetite, especially in infants and children with iron deficiency anemia
Restless legs syndrome an uncomfortable tingling or crawling feeling in your legs


These were from the Mayo Clinic website. You also lose your hair evenly and some have bleeding gums. The ridges in your nails (if any) run vertically. You know, Ange, I always think that my symptoms are one of my many dx's or a side effect of med's. How the heck are we supposed to know? Then people tell you to call the doc, which one? I've got too many specialists on the payroll and if you call the wrong one, they get upset. I don't call, just keep appointments. They want to diagnose me with something else and I can't take the med's for treatment so, what's the point? Statistically speaking, I cannot have as many dx's as I do now. It is just too unreal. Sorry, got a little sidetracked venting.

The fatigue with the iron deficiency is a lot worse than the MG fatigue. One thing I noticed was that I was either barfing or shaking from lack of food. You really don't want to eat when you are severely deficient. So, when I would eat something it was the worst thing possible because I needed the most calories. Even tried the Ensure, but vomited. My body does not like that stuff.

Ange, have you had your other vitamin levels checked? Thinking outloud, but I do have other suspicions about the deficiency. Malabsorption for one. Seems like that may be something I have to batttle all my life. What's new? lol Wish you all the very best, Kim

Very interesting. There was a lot of talk when they found my anemia, one doc would get upset about it but the next would say no the rbc count was fine. Turned out to be iron and transfer levels that were low. Of course after surgery it was full blown anemia too. Now that my blood work looks better the pcp was very on board with continuing the iron supplements because "that's why your blood work is better". It makes me wonder what's going on that this is even a problem. I know you guys understand when I say I'm really tired of new problems cropping up.

Kim, I'm so sorry to hear about the blood cancer. I love your attitude though, they really can't tell you you only have ten years, I mean seriously....10 years!? A lot can happen in 10 years and you have the right attitude.
Cathi

Thanks for that info Kim! I have a whole host of those symptoms and am totally addicted to ice! Very weird!! I've also sometimes wondered about the malabsorption thing especially because the oral iron I was on for months did absolutely nothing to raise my iron levels despite the fact that it was supposed to be a chelated iron and easily absorbed. I haven't had all my vitamins tested but know that my folate, vit B12 and 6 and especially vitamin d levels have been consistently low and my electrolytes are also sometimes problematic so maybe you have a point. Am told that all my drugs can cause these deficiencies though so who knows? I hear what you say about all the specialists! It gets to a stage where no one really takes responsibility for decisions because they all expect the other one to do so, so you end up landed with it as the patient. Also how dare they get annoyed when we call them yet they do! O gosh we could drive ourselves mad trying to make sense of what is going on with us!

Yip Cathi I know exactly what you mean about all these new probs cropping up. Also once they do they are never properly accounted for and I find myself analysing and getting horribly frustrated because nothing seems to ever fit perfectly in the box. Know what I mean?

I am so sorry about the blood cancer and also to hear that you too have had to go through the trauma of doctors telling you you have such a shortened life expectancy.
I'm delighted to hear that you are not taking them to heart! No one but God knows when our time will run out and these doctors who feel it's helpful to say such unproductive things to patients should be shot! It's not ok to take away a persons hope ever!!! I was told 10 years ago that I had about 3 months left to live. Well shows how wrong doctors can be hey. Just recently my vascular surgeon told me out of the blue that I should start doing all the things I want to do before I die. What a shock, so I really understand ur trauma and the work you must have done to get back to that positive place you are at now and to focus on living instead of dying! Good for you!!!

Anyway guys I am very grateful that we at least have a forum where we can share, advise and support. With our positive attitudes and perseverence we will get there!

Hugs
Ange