Newly diagnosed with questions
 

I was finally diagnosed end of May after every blood test and tortured muscle test came back negative or normal. After original neuro doctor sent me home indicating it was mental. I got a second opinion with the Chief of Neurology who knew right away. Did my first IViG treatment and Prednisone in June and felt great for about a month. The doctor tapered me off Prednisone, completed in October. Started Imurane and Mestinon at the same time in June. Mestinon was not working so stopped. My symptoms don't seem as extreme as I see others but are bothersome to me. I've had swallowing difficulties for a couple years and has never improved, walking up and down our stairs continues to be difficult. My breathing is a challenge when using my arms and walking, I.e. Folding laundry and carrying upstairs. Just 2 years ago we would walk 12 miles, now I'm lucky to walk 1. MG is a big mental challenge for me and has been extremely frustrating. I feel great in the morning then crash thru the day. How do you all deal with this?? My mind and body do not want to compromise with each other. I'm slowly learning to select my activities of impertinence.

I recommend a nice long nap mid-day and maybe a little coffee.
Mike

Hi, Antsy Pants! Welcome to the world of unpredictable MG.

It's good that you found a neurologist who was thinking clearly. ;) I'm pretty tired of them pulling that, "It's all in your head" nonsense on women who have very real symptoms.

MG doesn't like to be pushed. It will push you right back, possibly into a MG crisis. You do not want to go that far, because it will take much longer to recover from that and they often do more lovely drugs (IV Solu-Medrol) in the hospital, too.

No one "likes" to change their life, but it's necessary with MG.

Did you have any side effects of Mestinon?

I'm not questioning your diagnosing doctor, because your symptoms sound like MG, but did he even do a Tensilon test in order to "prove" you have it? Did they do a Single Fiber EMG?

Since you have breathing issues, it's important to find a good pulmonologist. They can assess where you are right now and try to determine what your "normal," or baseline, would be. They should do MIP and MEP in addition to the regular PFTs/breathing tests. MIP and MEP show how well you're doing at breathing air in and out, and they are specific to a neuromuscular disease.

An oximeter can be useful if you have breathing issues on a regular basis. When breathing is worse, your pulse might go higher as well (the heart is working harder to get you oxygen).

A pulmonologist can also do an overnight oximetry, to see how your breathing is while sleeping. It can be much lower if you're not doing well, and you might need a BiPAP or oxygen at some point.

Some drugs can make MG worse, as can a lack of sleep, getting too hot, infections, surgery, etc.

www.myasthenia.org
www.mdausa.org

It helps to read up on MG, because there's a lot to know.

Is there anything else you need to know or want to vent about? :cool:

I hope you can find a good balance between doing and MG. It takes some finesse and, even when you think you know what you can do, MG can always surprise you!

Annie

Thanks Annie
 

I was diagnosed with the Tensilon test. When I went in for the 1st IViG Treatment they started me with 50 mg Benidryl that, my husband, said I coded and at that time they gave me IV Steriods. That was interesting. I didn't have terrible side affects from the Mestinon, just excess salavating. I tried upto 120mg every 6 hours for a week with no change.
So much to learn and I really appreciate all the info you have given and what I've been reading on other posts.

Please feel free to ask any questions you may have. No question is a dumb question. You have a vast amount of experts here that are ready and able to help you.
Mike

i do have a question. My doctor told me it could take 8 months before feeling affects of the Imuran, Ugh. When I first started this adventure the Prednisone seemed to have given me my lost strength back for a couple months before it attacked me mentally. Now off of it. I was thinking about asking to go back on it to see if I could feel better. What are thoughts on that? He doesn't feel I'm bad enough to do the IViG again, which I agree but at the same time I would like another boost. Just worried about the side effects of Pred. I feel like I was stalking my doctor by constantly emailing him with every new or worsening symptom with the response of "you have to give the medication time". In my mind it should have taken effect within days. I'm really having a hard time accepting this but trying hard to work on it.

I have been on prednisone about 5 years. Started at 80mg now on 7 1/2 mg. I was on Imuran for 12 months it almost killed me. I lost 35 pounds. My dr said 6-12 months before it worked. I stuck out the 12 months and when I stopped Imuran for 2 wks I felt like superman but that was short lived. So my Dr was convinced it was working but it made me too sick. I'm now on Cellcept and it started to work after 6 months. I haven't had IVIG in over a year. Don't get me wrong, I'm not 100% but have learned a little about how to live with crazy disease.
What I'm saying is Imuran may work for you. But you need to give it time. As you will learn there is no magic bullet. What works for one might not work with another!! As for the Prednisone once you start it is hard to get off. The 80mg did solve my double vision.
Best Wishes,
Mike

Hi,
Welcome to the site. I have found out more information from all these great people. I have been diagnosed for a year now. I'm on Mestinon and time release Mestonin at night. I just completed my 6th round of IVIG. I feel much better for 6-9 weeks afterwards. I can't say anything different than anyone else except you are not alone in frustration and wondering "what's next". I was a very active physically fit person. Now I'm understanding my limitations and naps have been a must for me. At first my legs felt like lead and steps usually equalled a fall. Now I know how to negotiate steps a bit better. I have an excellent pulmonary doctor which has had to grasp my once in awhile asthma flare up to ongoing respiratory issues. I have routine breathing test output and input etc. I had to accept as a non smoker ever that my breathing test last month dropped to 32 percent efficient. The big thing I find that helps is my support system and my own self acceptance. (Work in progress) and to know triggers such as severe cold or heat. I love outdoor fires but I know it can trigger my asthma that triggers my MG. I'm a lucky person to have good doctors and people to support me on those not so good days. Positive surroundings and low stress go a long ways. Good luck!

update on my new treatment
 

This is my update on MG treatment. So after being frustrated and depression setting in I talked with my neurologist about doing something more. Tired of being tired and not be able to do things with my family, having trouble swallowing and trying to climb my stairs. I've had 2 IViG treatments and on Azathioprine, though my doctor said he can tell I've improved strength wise my day to day activities were nonexistent. He recommended Rituximab. I had my first infusion January 29 on February 3 I woke up feeling like a new person. Walked 3 miles feeling great, didn't need to take a nap. Haven't needed to lay down and recharge, havent needed to drink coffee to get me thru the day. I can feel my muscles quivering from weakness just because I haven't been able to exercise. I've been able to walk 2 miles a day since. I go tomorrow for the second infusion. I have never been more excited about getting my life back (at least for awhile).

Thanks for updating us. So happy to hear that you're doing better. Adjusting to the diagnosis of MG and learning to manage your day can be a challenge. And finding the right combination of drugs that'll help you, takes time. Remember not to push yourself too much. The quivering muscles could be from not exercising much or it could be from your muscles being fatigued due to the MG.

Prior to my diagnosis I was very active and trained for triathlons. Even almost 5 years later I find it hard to accept that some days I can only walk 1 mile (if that :rolleyes:). When I have pushed myself too much, I have major fasciculations in my legs. My neuro says that the fasciculations are most likely due to fatigued muscles. It's a delicate balance.

I hope you continue to experience improvement with the infusions of Rituximab.
Cate