Hospitalized for Myasthenic crisis 7-3

[kathylee]

Well it happened the hard way....I went back into the neuro for 2nd time. I'd pushed to wash my hair in the shower before I went and I went into this attack that I'm still having little flashback about it was so scary. By the time I was infront of the doc and she done abrief exam she said you are not safe to go home I need to admit you to the hospital you are having a myasthenic crisis. I could barely speak she noted much less breathe.
I'll have to continue later. I just got back online cause on top of going into the hospital my new laptop went down and I just got back up. It's late so more tomorrow.
I've missed you sooooooooooooooo
Kathylee

[Joe S.]

OMG! Can I have more details?

[eyeamdry]

Kathylee-so sorry about your ordeal.  Hope you are better soon and can tell us about it.  Lucy

[Scottietottie]

Kathylee - it's really good to see you again. I'm sorry things have been so bad. Hope you feel better soon.

Take care - Scottie 

[modistee]

*GREAT BIG HUGS* to you kathylee.  I am soooo sorry it happened to you this way. 

Modistee

[Pooh]

Awww Kathylee,  big, big PoohBear hugs coming your way.    Sure hope you are feeling better real soon. 

Really lucky you have a good neuro that didn't dismiss you as "it will be fine, just go home and rest." 

Good Luck dear, and I hope we see you up and back real soon.

Hugs, Pooh

[Patze]

Hi Kathy,

Boy I sure hope that you're feeling better soon (and I'm thankful that you've got a sharp doctor too!).

Please take care and keep us updated -

Patze

[irish]

Kathylee, This is totally not a surprise to me. I have felt that you were tettering on the edge for some time now. You have been very blessed that your doctor was sharp enough to know what was going on and took immediate action.

I hope and pray that you will recover quickly and that you rest up darn good before you slowly start to get back to activity.Irish 

[salsen]

Glad to know you are home and the crisis was stopped in its tracks.  Hope to hear from you
soon -  after you rest.  Take care .

[Skylar]

OMG, thankfully your doctor acted quickly. I hope you're feel better.

Skylar

[Nettie]

Glad you are back home.  Take it easy and let us know that you are ok when you can.

Nettie

[kathylee]

Hi
Thank you all....I feel tears now.....I am too alone in all this and grateful, so deeply grateful I have you all here. My job is gone per se.  the work place told my agency they werent sure they could keep me busy enough with my limitations...heck... I man the main desk and telephone! The deal is they now want someone to do filling for maybe 30min a day and I can't stand ling enongh to do it.  The agency person literally told me some people are too sick too work thats what SSDI is for.  I decided to take a medical leave with the agency.  the new doctor (Kay) I was treated by seems to think I could go back to work. See the neuro that admitted me is not the one(s) that treated me in the hospital. They turned me over to general neuro because their muscle specialist replacement is not coming till first of August. I lobbied for plasmaphereses on the 2nd admission in a week due to the 60mg 3 x daily stopped controlling the lung issues. The senior doc Ramen discouraged this telling the real risk of lung puncture and that they'd have to put me in ICU. In retospect not sure if this has something to do with my insurance being medicare and medicaid and or that they want to wait for the muscle neuro. Certainly after calling my local hosptial and getting info on plasmapheresis I get that putting in the shunt would be something harder to handle, the trauma of it and a wound to tend all of which I'm not sure this body that went into crisis over too warm shower can handle.

Ramen has said maybe I need to cut back not realizing my life is already too small. Again I get the impression somewhat like I am supposed to learn to deal with it. Like expecting a decent life is expecting too much.  I get that I may need to educate them on how limited I am and give them the opportunity to get to know me, but I thought having a MG crisis and the meds working is diagnosis confirming. Doctor Kay the resident even quietly questioned if they would keep me on the mestinon if my blood work comes back negative.

This last Sunday I did my first errand at Walgreen and was checking out when my words came out garbled. I went to my car and realized I had this sensation in the back of my mouth in tongue and top of mouth. And as I went thru this day I continued to struggle to talk tho I pulled it off. The next day I started the dose increase doc Kay said I could do 75mg every 6 hours and in about 2 days it was gone.

He has given me paperwork to carry with me inthe event of another crisis here at home 45min away form his hospital. He said I must go to local hospital and said to get somewhat of a relationship with a local neuro and certainly tell my family doc.

Well I am bushed. The higher dosing at every 6 hours is affecting my sleep somewhat I think so I'm gonna sign off for now.
More later
Kathylee

[Linda196]

Kathylee, I don't think the concerns about plasmapheresis had anything to do with your health insurance. I was a plasmapheresis nurse specialist for nearly 10 years, and all of the information we had (from world wide sources and research) indicated that the procedure wasn't a great deal of benefit to straightforward MG, even in a crisis. It is used in MG as a prep for thymectomy, and according to 2004 statistics, that's about all.

Granted, research since then may have changed the overall picture, but from 1993 when I started, until 2001, when I treated my first MG patient, the need for plasmapheresis in MG dropped from an indication 3 (probable benefit, not the only treatment, weigh risks against benefits) to an indication 5 (not considered of overall benefit, but may slightly alter symptoms without prolonged benefit)

The risks of puncturing the chest cavity, or a lung, during the insertion of an access catheter, makes it a very invasive procedure. It was our standard of practice that no matter how ill our patients were (and some were on ventilator support) that the insertion was done in a fluoroscopy surgical suite, by a radiologist/vascular access specialist. Our only exception to this rule was for patients who needed immediate dialysis before plasmapheresis, and were having a dialysis line inserted in ICU, because we could access the same line.

[irish]

kathylee, One of the main treatments for myasthenia besides the prednisone and the Imuran (2 of the mainstay treatments for MG but take time to kick in) is the IVIG or intravenous immune gamma globulin. This has helped many people. Sometimes after a treatment of infusions for 3-5 days people with MG will have a very good improvement in their condition.

I am getting IVIG because of my MG and because I can't take the DMARDS drugs like Imuran. Once they get your condition stabilized with the IVIG the Prednisone and the Imuran are given to control the symptoms. Both these drugs help decrease the autoimmune assault on your body. Some people are even able to get off the Prednisone and be on the Imuran only.

I have read that people with rapid onset symptoms of MG are frequently easier to bring under control. I don't know if this is true or not. All I know is that I had extremely high blood work and it has take me well over a year to have improvement in my condition and I am thrilled. I still am unable to work but at least I am not having to sit around as much and can do a few more things. Please see what your doc says about the above suggestions. Let us know how things play out.

It might be a good idea for you to apply for disability. This way you will have a guaranteed income and if you become able to work again you can work part time and still collect benefits. I had to quit work and it is the pits as that is where a lot of us get our social lives now days. Good luck. Irish

[loisellenatkins]

sorry you are feeling so poorly my thaughts are with you. hugs, Lois