I joined this group a few weeks ago. I know that there are some good people on here who have had MG for a long time. I'm new with it as being just diagnosed in July. I had been having symptoms most of this year. Anyway, last Wednesday I started with a sore throat. Then I felt like I was getting a cold. On Thursday I ached so bad all day. I really thought it might be the flu but I didn't have any fever. Anyway, I went to the doc and the flu test was negative. They gave me Levaquin. I didn't get it filled as I felt like it might just be my MG stuff making me ache and get weak. I had traveling 8 hours to my Neuro on tuesday so I thought that I was just paying for it on those days.

I actually felt better Friday but today (Sat) has been rough. I am so weak I can't hardly make it. My husband filled the antibiotic and i started it today.

I just think this stuff stinks........ We were having something at my church tonight and my family went without me as I wouldn't want them to miss anything. I know that God is with me thru all this, but when this MG stuff starts interfering with my life like this it really gets me down. I usually a very positive person, but this stuff just gets to me. The weakness is overwelming sometimes. I praying and hoping that I go into remission after my thymectomy at the end of October if is HIS will. I know HE will never leave me nor forsake me.

Thanks for this group here....I have really enjoyed reading the posts and I have gained alot of knowledge from you guys.

I hope the Leviquin is not making my symptoms worse. I was just wondering if any of you have ever had any problems with it.

Thanks so much

JCPA,
I am so sorry you are feeling so bad! Please know you will be in my prayers. You are absolutely right in that God will never forsake you. I am newly DXed myself and have days when I wonder why I'm having to go through this but I keep telling myself God has a reason for everything even if we don't understand it. I know you must be so disappointed to have missed your church event. I know it is so hard not feeling like doing things you normally would have. Not knowing how I am going to feel from day to day has been a hard pill for me to swallow. I am taking it one day at a time and working really hard on pacing myself. I have never been on levaquin so I'm not going to be any help there but you are right about there being so many knowledgable people in this group. Try and relax tonight!!!
Kendra

Hey honey! I know what you mean....MG is scary and lonely, but you DO have support here! I know it's NOT the same as having someone wrap their arms around you or hold your hand and pray with you, but I AM praying for you!

I have been told that ANY antibiotics can make you feel weaker, but I have to take them frequently, so I just try and stay in bed on those days!

You are right! He is by your side. You will go into remission if it is His will. I pray the same thing all the time! There HAS to be a reason for this. Has to be!

There is nothing wrong with getting down. That is totally normal. I think I'd be afraid of someone who was always "up" - esp with this darn disease. Vent all you want. We are HERe for you!

I miss my old life as well. I hate being in the hosp all the time and looking like a human pin cushion! It just plain stinks! I am VERY grateful to be HERE, though, even on my worst days! When my face was finally able to move I think I smiled for several months! IT felt so great!

You have been through so much. There is only so much ANYONE can take before they get down. It will get better though! I believe that with my whole heart!

If you want to contact me 24/7 email me @ erinhermes@hotmail.com

Love,
Erin

JCPA, I think some of us who've had the disease for awhile forget how absolutely difficult it is and how much it changes life. I am really sorry you are having a rough time dealing with MG and all that comes with it.

Please refresh my memory - are you on only Mestinon or other drugs too? The reason I ask is due to your sore throat. If you are immunosuppressed, you are more prone to getting infections. And "opportunistic" infections like staph infections (we all have staph on our skin but it gets all ticked off when our immune systems are suppressed).

I can't have the Quinolones because I'm allergic to them. That's the only experience I have with them. My sister, who does not have MG, took it and had delusions! She thought she saw a squirrel. Obviously she stopped it right away. So, if you don't start seeing things and aren't a lot weaker, I think you'll be ok! Many people I know who have MG can tolerate the Quinolones (Levaquin).

MG does not cause a sore throat and aches/pains. It sounds like you are sick.

I'm sorry you had to go so far to see your neuro. Isn't there anyone closer to you? Besides, you should get yourself a good primary doc for times like this. When you feel better, that is.

It might help, when you get new symptoms, to write them down. Then you can see them in black and white (and show them to your doc too). It always helps me to write things down. When I'm stressed, I write down what is stressing me out so my brain doesn't have to think about it anymore. I can put things in perspective that way too.

It is very hard to get used to MG. The good news is that, after a while, you just look at it as your new normal. Maybe spending some time looking around your environment, thinking about what you could change to make things easier might help. Like is there a place to sit everywhere so you don't have to stand - like in the kitchen. Do you have frozen dinners or simple "picnic" type food on hand when you don't have energy to cook. Or paper plates and silverware. And this is really a serious comment . . . You may want to make sure there isn't anything around you could trip on or run into that is sharp. I've fallen one too many times because of "foot drop" and keep my environment as clear of clutter as possible!

I wish I could help more. Keep telling yourself it will all be okay. Pamper yourself. Do FUN stuff. And don't forget to laugh - though not too much or your neck and breathing muscles might not like it!

Go in if you are feeling worse. I hope you feel better soon.

Annie

Thanks doglover...i sure do appreciate the prayers and I will say a prayer for you tonight too.


Erin....You're such a trooper. I can tell from your post that you have the gift of "encourager". Thanks so much and I appreciate your kind words so much. I plan on emailing you later.

Annie you are so knowledgable. Great suggestion about writing stuff down. I went on my computer and started a journal for this. I am on Mestinon 3 tablets a day. I started it on July 19th and I could tell immediate relief of my symptoms. I love it. When I went 2 see her on Aug 18th, she put me on cellcept. I read the pamplet from the pharmacy and read about all the things to be concerned about. I read that it was designed to suppress your immune system and I reckon that's why Ive picked up a cold or something. Thanks for the great advice.

Also Annie....

I have actually found another primary care phy that is 30 minutes from me. I go see him on Sept 17th. I hoping for a good doc there.

Unfortunately I live in a very rural area and the docs here have not seen much MG. I wish I did have one closer though but It can't b helped.

I'm going to keep a close watch on my weakness..if it gets too bad I may have to stop the levaquin and try something else. I just never knew that a cold could get you down like this has...before this I can't begin to tell u the last time I've had a cold.

Let me get your opinion on the cellcept. She started me on it on August 18th. I guess that's why I picked up this cold? You think?

Also I'm really thinking about stopping taking it. I'm going to have a thymectomy at the end of Oct. I don't want to be sick before I go in. They are going to give me IVIG's the week before the surgery though. What you think????

I value your advice and thanks for your time.

JCPA, My opinion is that you need to talk to your doctor before you make any changes to meds!!!!

I've only had experience with steroids, not Imuran or Cellcept.

If you can find a primary doc who is kind and intelligent, they can LEARN about MG. I would rather have a really terrific primary doc, willing to learn, than a know-it-all who won't listen.

Cellcept takes awhile to kick in. Give it a chance. Maybe that and the thymectomy will help.

Yeah, most definitely you probably got sick due to being immunosuppressed. Sometimes, they can't tell by looking at your white count if you have an infection. I've found that the erythrocyte sedimentation rate, although not a specific test for anything, often reflects an infection going on. When I had clostridium difficile, an infection of the GI tract, my sed rate was 104. My white count was completely normal. Normal ESR is about 20 for women.

Just talk to your docs. And take it easy. Wash the hands. Carry Purell around. And so on.

Annie

JCPA,
I am also on CellCept and have a very hard time taking any antibotic. I have had severe allergic reactions to may antibotics including the Levaquin that was prescribed for you. Be careful. I actually had to be off CellCept for 2 weeks before starting any antibotics. Hope you find this board a great place like I have and as Erin said, sound off as much as you like with your feelings, because we are all in the same boat with you and we are the ones who understand what you are going thru. I will lift you up in prayers, as I know "The Man Who Can"!! Keep the Faith and let us know how you are doing!
Hugs,
Simon