My repeat CBC was the same, hemolglobin at a 11, which is a mild anemia. Still have moderated spherocytes and my RDW is even higher at 22 (normal under 14.5). The rest of the blood work returned to normal except the albumin and calcium are still low. Went to the gastro, he thinks I have Crohns too. He ordered upper barium and a bunch of lab work. He wants me on a Celiac diet too besides the Crohns diet. He said I may have a celiac sensitivity.

I go to PT on Wednesday to evaluate for Neurological symptoms related to home safety. Has anyone ever done this so I know what to expect?

All docs mention about seeing a hemotologist, but no one refers me - Anemia and spherocytes usually mean hemolytic anemia. I see the neuro and endocrinologist next week and will try and get a repeat CBC to see if the anemia is improving. I am a month post IVIG, so if it is IVIG related, it should be improving by now. If it is not IVIG related and is autoimmune related like pernicious anemia, I would think it would be the same or worse.

I feel like my symptoms are stable now. I think the IVIG improved my breathing and bulbar symptoms. There is no improvement in my extremities. I feel like I have permanently lost the muscle strength in my arms and legs. Is this possible with MG? Has any one experienced this? Maybe it is just the summer heat and I would have been worse than I am without the IVIG.

I want a thymectomy more than ever. The hassle and post-IVIG symptoms are just not worth the benefits of IVIG. I feel like I have lost 3 years of my life due to MG and I want it back, like now. I am missing my daughter grow up. I want to go on a vacation, I want to go swimming in a pool and not sit in the recliner for the rest of my life.

Sorry, I am feeling very down,
kathie

Kathie it's good to hear that your symptoms and bloodwork are stable, but I can understand your feelings of wanting your life back. MG can and does take from us and its hard to accept that. I missed both my sons and daughters graduation from college due to MG. I am determined to be able to travel to Virginia to attend my daughters wedding in October.

Before I developed MG I have been diagnosed all in the last 3 years with Crohn's disease, Microscopic Colitis and Anklyosing Spondylitis, all autoimmune diseases. I have had 2 bowel resection surgeries to help with the Crohns. Unfortunately it's common that once we get one autoimmune condition many of us will develope another.

The IVIG should be wearing off soon and your bloodwork will return to normal in time, it's been bout 6 weeks for me and the blood tests are slowly returns to normal. Given the hemoglobin and spherocytes the Dx would be hemolytic anemia and it sounds like you are recovering from that.

The IVIG did a great job in allowing me to breathe better and swallow as well and im still enjoying the benefits. I have been able to cut my Mestonin usage about in half. But like you with the Hemolysis requiring blood transfusions I do wonder about the practicality of IVIG in the long run. Right now my Hematologist and neurologist are taking about ways to try IVIG again safely.

Thanks for the update

Take care

Joe

PS a great website regarding digestive issues, Colits or Chrons and most importantly finding ways to eat gluten free for Celiac disease can be found at:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=2

It's a great group there, very helpful and compassionate.

Thanks Joe, I am sorry you are going through this too. Gastro issues are particularly hard when your muscles are already weak and getting to the bathroom becomes an issue.

I have not been able to reduce mestinon. Please do let me know if they find a safe way to do the IVIG for you. The hardest part of this disease is missing the activities I would do with my daughter. I was the mom who always had the kids over, who took my daughter and 5 of her friends on vacation every year and took off once a week in the summer to take them to a water park, amusement park or the beach. That is the part of my life I cannot accept living with out. She is only 15, and I will be losing her to college in a few years and then she will be building a life of her own. This is not how I want her to remember our time together. I was hopeful for IVIG returning some normalcy to my life. Even if I could do some normal things like go to the beach for the day during my good couple of weeks in between IVIG, I think I could live with that. The thought of never being able to do that again is overwhelming.

thanks again and sorry for being so down,
kathie

Joe, what medication did they give you for the Crohns? Are you on a longterm non-steroid anti-inflamatory that helps the MG and the Crohns? If these are all auto-immune, they should be some anti-inflamatory that would help all of these diseases.

kathie

Hi Kathie. It is so hard being a single parent with MG...and other autoimmune diseases. While my 2 kids are out of college just now, I have missed their graduations last year due to MG mostly and AI diseases as a whole, I feel awful about that even though they have both been very understanding and mature about these circumstances....it does hurt though not being there as I know I should be.

The good news is that for Crohns or Colitis, one of the main treatments is Imuran (Azathioprine) which is one of the main non-steroidal immunosupression treatments that is approved for treatment of MG. I also take allopurinol to help my liver tolerate the Imuran, some people that take Imuran have blood tests that show that the liver is affected by Imuran, take allopurinol to protect the liver from this issue. If this ever comes up, be sure to ask your doctor to look at Allopurinol as a way to help your body deal with this med.

Overall Kathie the Imuran is a great med and an older medication that is fully understood, it's been around since the 1950's and works well with minimal long term risks for both MG and Crohns or Colitis. It is a non-steroidal immune suppressant but seems to be well tolerated. I also am gluten free for Celiac issues that are part of Crohns and do help with MG as well.

I fully understand your frustrations for as a single parent myself I have had to over the past many years rely on others to take my kids to activities while all I wanted was to be healthy enough to be a 'normal' parent. It hurts not be part of activities that I know I should be part of.

Like you I will be talking to my neurologist in early August about a thymectomy....I want some part of my life back. I am a physicist at MIT in Boston and while MIT is a great university to work for with a disability, I want to be able to work a normal work schedule and just feel somewhat healthy again, it's been a long few years with the Crohns and the surgeries, now the MG and I'll have to admit this is hard.

Thanks for your update Kathie, I am encouraged by your strength and tenacity, you have a lot of strength and are quite an inspiration, your great attitude will help you so much. I hope you can find a good team of doctors to help you as you deserve, it's been quite a time for you.

Best wishes for you each and everyday

Take care :-)

Joe

Our situations are vary similar. I work in IT at Princeton University. Right now, I am technically fulltime, but I am using my accrued sick and vacation to take Wednesday off to rest. They have been very accommodating to my needs and schedule as well as the several episodes of disability this year.

Stats on the thymectomy look very good - 30% chance of remission lasting 5 years, 85% showing improvement and really no downside, no one gets worse.

Let me know if you decide on a thymectomy and which surgical approach they take.
kathie

Thank you Kathie my next appt with my Neurologist is August 13 and I plan on discussing the thymectomy issue. So far MIT has been great to work for, I have not had to use any vacation time and I have been able to work from home a lot, as a physicist I usually have lots of data to sort through which I can do from home . I just got FLMA approved for the IVIG and to use this year and they pay me fully for all of the time off.

Thanks so much for sharing your experiences Kathie it has meant a lot to know others are dealing with the same issues. This is not easy that's for sure!

Take care :-). ...and thanks...

Joe