Brain,

You sound like Missygirl......she has Musk(?)MG - which affects the swallowing, etc. As I said, my swallowing, breathing, etc, were the last to go. It was so very scary! I just don't know what I would do if I felt like that day after day - I really don't

Did you aspirate something? Is that what caused the pneumonia? I choked on some food about a month b/4 I was hospitalized (hot sauce and chips) and that's what my neuro thinks caused all those weird spots on mu lungs, though my pulmonologist begs to differ.........

It was awful! I had to actually push my jaw up and down in order to just chew. I was so scared!

Are you on steroids now? I can honestly say, they made all the difference in the world for me! I was able to swallow, eat and breathe! Granted, they did make me manic and have panic attacks that were out of this world (I was on 80 mgs a day) but when I was finally able to eat, I started crying.

Now every time I am hospitalized, my neuro sends in a therapist to insure I can swallow properly and they always say I am the fastest swallower they've ever seen. I guess the fear of choking will always be with me. I do still have soft pallette issues and still only chew ice with tiny bits of liquid all day long............

I never want to go through that again - EVER! My neuro has promised me he'd never allow me to get that sick again - EVER! I made him repeat that while looking me in the eye. He was deadly serious.

I think my problem was that I waited too late before I truly sought medical attention. I knew something was terribly wrong, but had no idea why. I thought I had arthritis, TMJ, depression, etc, but never knew I would get that sick that fast. You would think that any capable dr would have been able to see my eyes rolling around in my head, but no such luck. I was scheduled for surgery for my deviated septum and sinuses for March 27, but had my crisis on March 14, and had my thymus removed on the 22nd of April. Thank God I never had that surgery! I never would have made it!

So you are having plasmaphoresis? How are you handling that? I thought it was ghastly! I was literally CRAZY for 3 days after they placed that huge cath in my jugular!You know the one with the 3 pig tails on it? That's when I was started on Paxil. I don't know if it has helped or not, but hope so.

I have been feeling a little down lately. It may be time for more IV IG or the other. I see my neuro next week. I'll ask him about it then.........

My hubby has scheduled a trip for Jamaica next month. I should be excited, but the heat really wears me out. I am so afraid of getting on that ship and getting sick. Mind you, I was only diagnosed in March and had surgery in April - not so long ago. Looking back, I should have gone in sooner......

I do know a girl in my support group here in SA that has been in remission ever since her thymectomy 11 yrs. ago. She is a great lady, but I must admit I'm a bit jealous - petty and childish, I know. She has just done GREAT!

Canada is so beautiful! My hubby and I love it there!

Take care and know that I am praying for you!
Erin

Hi Brian,
Wish I had something useful to add, but I've been lucky to escape the swallowing issue with MG - I think I've experienced everything else. I'm having food issues at the minute because I've been sick to my stomach every morning (and NO, I'm NOT pregnant) when I have to take a load of meds! I usually start to feel better as the day goes on but mornings are rough. I think my upset tummy has ti di with my reducing of my streiods.

So you live in Atlantic Canada? I was born and lived in Nova Scotia until my husband and I moved to Scotland 3 and a half years ago. I was diagnosed there and left a great neuro. My treatment here has been good too though! I certainly can't fault the NHS!

Take care all!
~Kathy

Thanks Kathy,

Since my plasmaphoresis and increase to my mestinon dose my eating is getting much stronger. Right now, I'm fighting to get enough into me as my stomach had shrunk so much over the last year here. I'm still not getting enough into me, but I am getting much more than I was. There are also still some foods that just don't work and I know to avoid them.

Yeah, I'm in Atlantic Canada - New Brunswick. The leaves all changed and have mostly fallen while I was in hospital. Wonderful time of year around here if you can get out on the roads to see it.

The only problem we have here wrt to MG is that there is only one neurologist in the area; he's brilliant but swamped. He made the time to come see me while I was in hospital and got everything turned around for me. Since I had my little crisis, I follow up with him in 6 weeks which is much sooner than previously planned.

Brian.

I don't have MuSK MG, I'm positive for the normal acetylcholine receptor antibody that is common in general MG, not the MuSK protein antibody. I'm just really fortunate in that it has not progressed to my limbs and is only effecting smaller muscles at this time. Heh, I say fortunate when I'm still unable to eat a full meal ... but I do have a lighter case of MG than many out there.

Hi Brian! Thank goodness you do not have the Musk antibody MG - I've heard that one is really awful! How did you take the plasma exchange? For me, it was truly terrifying! Granted, I hate needles, but it was soooooo invasive. I really hope I don't have to go back next week, but if I do, c'est la vie! I'll make sure to heavily medicate myself first (xanax for anxiety)...............I'll read your journal.......I just know it's going to help others! You've been so great - writing from the hospital is not fun!
Hang in there!
Hugs!
Erin

The plasma exchange was a piece of cake for me. I saw immediate results despite what I was warned about... the nurses doing the exchange figured it'd take at least three treatments before I saw any results but for me the first one tightened my palate up and made swallowing much easier. I felt the chill during the second treatment, but it was easily tolerable. The initial insertion of the probes in the neck was uncomfortable, but not too bad. This past three weeks have done a lot to eliminate (or reduce) my hatred of needles.

They were heavily encouraging me to get setup for regular oil changes while I was getting the plasma exchange done. I don't want to because I enjoy swimming and don't want a permanent port put in my chest; but again, it was so effective that I'd certainly get that setup if my symptoms degrade on me.

Writing in the hospital was quite therapeutic. They had me in quarantine, I could not leave my room because of the MRSA that I contracted while there. I had a private room, but couldn't get out of it... daytime TV is no joy for me so I read and wrote.

Hey Brian! Just wanted to check in and see how you are feeling..........I hope the plasma exchange made all the difference for you!

THings have been crazy here (as usual) but that's pretty normal.

Are you OK with me using your testimony for my MG brochures? I just wanted to double check to make sure!!!!!!

I see my hema today @ 9:55 for another check up.......how many docs do you have see? I feel like I go in every week - AUGH!!!!!! Granted my blood work is still a little wonky, but I am getting better, or will get better in time!
I may have to go back for another oil change, but we'll see! I'd much rather have the IV IG, but the other cleans me out, so whatever my neuro tells me to do, I'll do.........

I'd love to hear from you when you have some time!!!!!

Erin

Hi Erin,

I'm coming around... the plasma exchange was incredible for me and it seems to be holding more than a week since I finished my last one and symptoms are still nicely at bay. The nurses who did the exchanges seemed to think that where I was just starting on the exchanges that they would only hold for a week at the start and I'd be feeling the need again relatively soon. My increased Mestinon dose may have something to do with the added control too though. I'm still not up to eating a "normal" meal at a sitting, but I'm getting lots of little meals in through the day. Creme soups at snack time have been a Godsend for me. I'm starting to put a bit of the weight I lost in hospital back on (which is a relief).

I wish things were crazy here. I'm pretty frustrated with being mentally ready to go back to work (and have been for quite some time now) and physically unable... but that's the nature of the condition I guess. I know that I cannot go back yet because I went shopping yesterday for warmer clothes and a few groceries and that wiped me out... no way I can put an honest days work in yet. Fortunately, the company I work for is great and everybody is telling me to make sure I look after my health first.

I am absolutely OK with you using my testimony in your brochures... feel free to use the whole thing or pull snippits of anything that you think may help anybody.

As far as doctors goes... My thoracic surgeon continues to be the lead doctor on this whole thing and he will be following me for the next 5 years at least. I also have an oncologist, neurologist and family doctor that I see regularly. Need to go see the family doctor tomorrow to discuss when he thinks I can be considering going back to work.

Cheers,

Brian.

Good news all around today! Kathy is doing great as well, so today has been a fabulous day!

I am so happy for you! You know in the hospital I heard stories of older people with our condition just going in a couple of times a year for the plasma exchange and they were doinng great - so I'll keep my fingers crossed for you!

I am also glad to hear you are putting some weight back on - I've certainly done so too!!!!!!Now if only I could fit into my size 2-4's it would be terrific - seriously though as long as I'm out of the hospital I'll take any weight!!!!

Had my labs done today and they still look good. My doc seems to think that I feel yucky due to a virus, so that should clear up soon! Also had my flu shot today and am starting another round of antibiotics for my root canals coming up on Thursday

I am just so happy for you!!!!!!
Erin

You will be even stronger soon and back 2 work before you know it!!!!!

Hey Brennan,

I was just curious as to how long it took for your tongue paresis to resolve after your surgery.

Take care!