kathylee

[kathylee]

I have had to reschedule my appointment for the presurgery appointment..the second was supposed to be 7-3 but my internist talked to new neuro to see me again for more tests so I don't have to wait till August for the new muscle specialist or figure out how to deal with going clear to Mayo clinic for teting and treatment. I need the myasthenia gravis evaluation. My breathing is worse and my immune system is getting weaker trying to cope with the stairs at my new apartment. The 'crash' I had about a month ago really scared me. I woke up hurting all over, my whole chest was in troulble in multiple ways...symptoms I've had before but far worse. The appointment unfortunately is now clear into August but they put me on the call list for cancelations. Also this is my local doc not at the university where I saw the cornea specialist.That guy new my other doc and said he'd do afine job. But I'm gonna need someone who will work with me around my medication sensitivities so not sure id that will be this doc or someone at university. I will say that the exam at the university was the first time I haven't had 2-3 weeks of major eye irritation from the drops they put in for the exam so I am gonna get the names of what they used!
By the way name of the cataract starts with encapsulated. He said that kind can grows fast. The one in my other eye is the usual kind he said it would take 5 years to have a 1% change.
Kathylee

[irish]

kathylee, I am glad you are on the cancellation list. It would not hurt to call every day or two to see if there is a cancellation. It certainly sounds like things are not going well for you. Remember if you are having problems with breathing that do not improve to call 911 and get yourself to ER.

I don't know quite what to tell you because I have never had a myasthenic crisis. The gal at my infusion that has had 9 of them says that her last one really went fast. She started having breathing issues in the morning and by noon she was in the hospital and on the ventolator. I guess I am thinking it could go even faster than that. I don't know if I told you that I asked my neuro how you knew you were having a crisis. She told me when you wake up in ER on a ventolator. Man that scared me big time. Now I see to it that I don't push myself over my limit. Years ago I pushed myself all the time as I did not want my muscles to get weak no matter how "tired" I was. Boy, was I ever dumb!!!

I have found that my mestinon medication really helps me. I am to take in the the morning even if I don't feel weak. My neuro wants me to keep some "on board" every day so that I am protected at all times. I always end up taking 2-3 within about 5 hours after I get up. Sometimes I take some before I get out of bed but need to keep crackers at bedside. Mestinon makes you nauseated on an empty stomach. I am wondering if your GP would order mestinon for you. I have been told that if you don't have myasthenia gravis it won't hurt you. If it helps you that is all the better.

Many people take the 60 mgm tabs 4-6 times a day. I can't take the 60 all at once so I do the 30 mgm and then in 1 1/2 hour I take another 30 mgm and then again in 2 hours another one if needed. This medication doesn't stay in the body long and is pretty well gone in 2 hours or so.

They also make a long acting timespan that lasts 12 hours. I have some on hand but have not tried it yet. Mestinon makes you sweat similar to salogen and I don't want to have to sweat for 12 hours straight. Keep us updated on how you are getting along. Do you have friends or family close by to help you go to doctor etc if need be??? Hope and pray all goes well for you. Irish

Kathylee, I just went to the next thread and was reminded about your daughters upcoming surgery. I want you to know that any kind of stress, be it physical or emotional, can make myasthenia worse. Hope you can keep calm in the face of all that is going on. If you can you are one great woman.

[kathylee]

Irish,
good thought about asking my GP for the mesitonin. I see the neuro Thursday and since she IS one of the exceptional ones, just not a muscle specialist, I do have hopes. I go the data from last breathing tests including verification on the ones I failed that arent in the results cause well they said their were no results...isn't that dumb! It was a big result for me! I tried the perfussion test 3x and could not do it. Then I did a test he said mimics marathon runner breathing. Couldnt do that either. He said both require muscle.( he being the tech in pulmonary department I asked to go over the stuff with me.)  I had assumed this stuff was all in black and white but I guess not. Now I have to take with me for PROOF. The tech that did the test said that the last time she saw results like this was in a woman with myasthenia gravis. If not for her I'd still be shooting in the dark.
Does the sweating case increase dry mouth, nose, etc and/ or dehydration? I've already had to increase my water in take to keep up with normal sweating this summer. Are ther any other side effects?
I miss walking so badly. Ive felt depressed last few days and not sure why..walking always helped this. Last summer I walked regularly for about 10-20 minutes. I started out at 5 min. With the stairs at my new apartment I have no strength to do anything more much less go down and up just to go walking. I am sad about this.
I saw my therapist today and we talked about how do not let my daughters situation affect my health. I know what I gotta do. Staying positve for her will help. She told me she,s scared never has she said such a thing...she prides herself on being tuff.
Gotta go now. Thanks so much every one.
Kathylee

[irish]

kathylee, I assume you are referring to the sweating from the Mestinon---an no it doesn't change my dryness issues any. I just had the thought that maybe your doc might do a trial of it. It is a short acting drug. My worst times have been in the morning and then when I am fatigued. When I would go away for appt or whatever it is just like the energy is sucked right out of me. I will feel like I am so weak that I am going to sink through the chair onto the floor.

I also get a very weak feeling my my chest and can't take a normal breath. When I feel that spell coming I take my cereal bowl with my bottle of mestinon and both my inhalers and head for the recliner. Also take a bottle of water with me. There I stay until I get over this feeling. May take 2 hours or more.

When I am really weak I walk like Tim Conway and shuffle when I walk. Can't hardly pick up my feet off the floor. I have been too tired to eat and sometimes I will have to stop and rest when I am eating. It is such a weird disease and you can slide down the slippery slope so fast.

Actually, I am the best I have been in many years this past several weeks. It is wonderful to be this way. I just noticed that I could walk up and down the basement steps without nearly as much trouble. Generally, I lean against the wall and slide down. This is to steady me because of my balance and weakness. Good luck with your doc appointment.

Also, I don't blame your daughter at all for being scared. I would think she needs to be scared to get through all this. Sort of ups the adrenals and gives you the energy to get through the stressful ordeal. I will really pray that this is some sort of weird thing that is of no consequence. Please keep us informed. Irish

[Pooh]

Hi Kathylee,
I'm sorry but I am not any help at all with this, but I just wanted to wish you good luck with your tests and appointments.  Also please try and stay up beat about your daughter.  I wish her good luck to.  I will keep you both in my prayers.  Who knows they just might help.

Hugs, Pooh