[Ann Marie Hetrick]

I have never had any bad reactions to the IVIG infusions. The key I have found is that you need to be well hydrated before you start the infusions. I only get thhem when I have a flare and when I know I am going to start getting them I super hydrate 2 days before with gatorade and while I am getting the infusions also. The nurses told me this the first time I ever got them and I have never had a problem. Good luck with your next infusions. They work wonders for me.

[Ann Marie Hetrick]

When I started on pyridostymine I had horrible gas pains and diarrhea. I started eating activia twice a day with a dose of the med and dannon lite and fit twice a day with a dose. This really help me tremendously. I am now on 120mg 4 times a day and tolerating well. I do sometimes have loose stools depending on what I eat.

[Ann Marie Hetrick]

Hi James. I bought a cooling vest last summer and it did help tremendously. We have AC and still wear the vest in the house when I am cleaning as even with the air down low I get hot easily and the vest helps. I also bought a cooling fan this year that goes around your neck and I love it too!! Hope this helps.

[Ann Marie Hetrick]

We have a UV light on our central aircondtioner that runs all the time to clean the air and I also open the windows and the doors after they leave and clean all surfaces touched. All repairmen that have come have been very good as they know my condtion.

[Ann Marie Hetrick]

I will agree that they have not had enough MG patients to to determine that it does not worsen MG. I too had been under control for years and after receiving my second and third doses of  Pfizer had had extreme fatigue, muscle weakness, and blurred vision. I had to have IVIG treatments both times every day for 5 days to get me back to where I was. My ACchr binding antibody test came back very high also, 534. I am putting off getting the fourth booster till the fall. I do not like feeling crappy after the shot.

[Ann Marie Hetrick]

When I was being weened off of the prednisone and starting on cellcept the pharmacist counseled me on the medication and said that it can cause fluid retention. I do watch my salt intake and keep very well hydrated to flush my medicine through. I have been on cellcept for 8 years and have had no problems with swelling. I do pee alot all day.

[Ann Marie Hetrick]

I am with you Sheila. The humidity really does a number on me along with the heat. I too keep my thermastat set at 71 but I turn it down to 68 when I go to bed, it is more comfortable for me to sleep. My husband says the same thing and complains about being cold. I tell him he can put more clothes on there is only so many I can take off. The gas bill in the winter is better because I keep it low then too. I can not function when I get the slightest bit to hot.

[Ann Marie Hetrick]

I had the pfizer vaccine in feb and march. I had a sore arm with the first and some tiredness more than usual. With the second shot I had a very sore arm that felt like someone was punching their way out. I also had severe muscle and joint aches for 2 days and increased weakness. It flared my MG up. I had been under control before the shots and then I started not to be able to focus and the muscle weakness got to the point I was having trouble walking. I had  IVIG treatments every day for 5 days and it did help get me back to my new normal as I call it.

I saw my neurologist last week and she wants me to take the booster. I am scheduled for Sept 22 to have it. I am hoping I do not have the same problem. I will update when I get it. I am not looking forward to it as I am feeling pretty good mow.

[Ann Marie Hetrick]

Dear Stanley, I see your are an old timer with this too. I had a long road to diagnosis. I had complained for years that something was wrong but the symptoms came and went. They tested me for everything but MG and concluded nothing was wrong with me and wanted to start me on an anti depressant, I was made to feel like I was a hypochondriac. I refused to take the anti depressant because I knew I was not depressed. I developed a sinus infection and was put on amoxicillin which is not good for MG. Well about a month later the symptoms got worse and when I was on the treadmill I had extreme muscle weakness and went down like a ton of bricks. I broke my nose and had double vision that did not leave, I went to the ED and they thought I was drunk. They thought I had a stroke or heart attack. It took me a month to get into my neuro opthamolgist. She immediately knew what was wrong after she looked in my eyes. She gave me a shot in the office. 30 minutes later the double vision was gone and was started on mestinon. After looking at my chart she said I had MG for years. She also said it was good I did not take the anti depressant because it would have made me worse. It took along time to learn my new normal, I was used to pushing through the fatique and I know I can’t. Prednisone in the begining really helped me and was slowly taken off and put on cell cept with the mestinon.  Sorry about the length. I tend to go on. It is nice to talk to people who really understand.                                                                                                                       My husband and I will be married 41 years Sept 20th. God bless you and your wife. May you have many more happy years together. Ann Marie

[Ann Marie Hetrick]

I received both shots of Pfizer in Feb and March. The first shot I had a sore arm and was a little more tired than usual. That lasted about a day. The second one I felt like someone was punching my arm from the inside trying to get out. Two days later I had severe muscle aches and joint pain And more fatique. The symptoms kept getting worse I developed muscle weakness again and blurred vision. I felt almost like it was trying to go to double vision which I had for a month before I was diagnosed 8 years ago. I had to have 5 days of IVIG for 3 hours each day to help with the flare from the shots. The IVIG did get me back to where I was before the shots. I had been stable on 480mh of mestinon and 100mg of cell cept a day. I see my neurologist next week. I will discuss about the booster shot. I am leary because of the reaction I had. I too have been having some muscle knots that seem to move since the vaccine. So glad for this forum .

[Ann Marie Hetrick]

I too have had urge incontinence especially when I have a flare. When I feel the need sometimes and I do not go right away I have a problem holding it. This happens especially when I am feeling tired.

[Ann Marie Hetrick]

I do my grocery shopping at 6:30 am . I basically have the store to myself. It usually is just a few customers going to work and picking up donuts and coffee. I do not like going anywhere that is crowed and avoid it as much as possible. I do alot of my my shopping online for clothes and other things. I take cellcept and mestinon.

[Ann Marie Hetrick]

I did fight my husband for a long time about getting a handicap permit. I too want to walk to keep strength. We did get one for me but I really do not use it unless I am really having problems walking. It has come in handy a few times as I also have two bad knees and when they are acting up and the myasthenia combined  I have a hard time walking. I feel guilty though because when you look at me I do not look like I have anything wrong with me. They are good to have when you are not feeling your best.

[Ann Marie Hetrick]

Summer heat and humidity saps the strength out of me too. I have to stay inside in the air conditioning . When I try to do anything in house I have to have the air turned down low and I still have to stop and rest. People think I am crazy when I say I prefer winter over summer because I can function so much better.

[Ann Marie Hetrick]

I have had to have IVIG treatments twice in the past year for flare ups. I was an outpatient and received every day for 5 days. It was for three hours each time. I really did not have any reactions. They had me drink 3 bottles of gatorade while I was receiving the infusion. They said it would help with the side effects. They also told me to drink it when I went home. The treatments really did help me.

[Ann Marie Hetrick]

I have been getting muscle cramps lately and never gave the mestinon a thought. I take 2 60mg tabs four times a day. I also find that stretching and rubbing aspercreme on the muscle helps. I also have been drinking gatorade too. I am also glad for this forum. Nice to know I am not alone.

 

[Ann Marie Hetrick]

I do not have a problem with watery eyes I do have dry eyes but this happened after I had my cataract surgery. I have to use soothe eye drops several times a day. I do have the runny nose and increased salvation especially after I take a dose.

[Ann Marie Hetrick]

I have a bruno stair lift and it is amazing. I only use it when I really feel I have to. It has come in handy quite a few times and does save energy and strength. I really used it after I got my second dose of covid vaccine because it flared my MG.

[Ann Marie Hetrick]

Hi Jerry. I was diagnosed over 8 years ago with MG. I had severe weakness and double vision. My neurologist started me on mestinon for the first 2 weeks then added prednisone doses slowly until I was on 30mg every other day. I saw a dramatic improvement but it did take about 6 months. She then tried to take me off prednisone and the symptoms started to return. So we slow started cutting back on prednisone in 2.5mg doses and I was started on cell cept also as this was going on. I currently only take mestinon 120mg mestinon 4 times daily and cell cept 500mg twice daily.