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
OMG! Can I have more details?
Kathylee-so sorry about your ordeal. Hope you are better soon and can tell us about it. Lucy
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 :)
*GREAT BIG HUGS* to you kathylee. I am soooo sorry it happened to you this way.
Modistee
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
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
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 ;D
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 .
OMG, thankfully your doctor acted quickly. I hope you're feel better.
Skylar
Glad you are back home. Take it easy and let us know that you are ok when you can.
Nettie
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
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.
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 ;D
sorry you are feeling so poorly my thaughts are with you. hugs, Lois
thanks so for the plasmapheresis info. I got worse again today and just got home from the ER a little while ago. I started crying when they sent in a second second nurse, the bully one to do asecond try at a blood gas. I finally said I was in my other hospital for days and this was never done that I was way too miserable to be made more miserable. I refused the proceedure. I am proud of myself. Being an abuse survivor this is a big win for me. They didn't even really get waht was going on. If I go again I'll try the other local hospital.....but honestly I'm willing to try anything to avoid another crisis or near one like tonight.
I know part or all of the reason I got so emotional tonight was because of this higher dose of mestinon I am on. Since I went up to 75mg every 6 hours I've been like this especially the first hour or so after I take it. Also hyper and even trembly. Sleep is degraded too. I wake evey two hours and if I don't take it and go to bed right away I'm too awake to fall asleep for awhile. Anyone else have this?
For the record I am already on disabiltiy. The thing is tho that I will lose medicaid if I don't work just "some". I had to stop seeing doctors for over two years cause I couldn't afford to pay off the deductible on the doctors and the tests. An MRI was the test that stopped me with a huge deductble.
I guess the literature talks about how treatable this is and that you can have some quality of life......I'm suprised that they seem ready to throw in the towel with getting my breathing stable. Now I get that I'll have an opportunity to see the new muscle guy in August and maybe anytime in August should be OK.......but as scary as this whole thing has been and even the new symptims added since then....I want it yesterday. I miss my grandbabies so so so badly. The newest one hardly knows me...realy he doesn't and that hurts. He is 3 months old!
I realize I am very lucky to be on disability already........but tonight it is hard to feel. Gotta go....so exhausted. It would have been better I see now to wait a couple hours and spent the night resting rather than being poked and proded by staff that didn't get what my university staff gets. I wish I was closer to them. They said I could come......but I could drive alone......and didn't have anyone to take me. Now don't get me wrong.......if I were bad enough I'd get one of my kids....but this wasn't it.
More later
Kathylee
kathylee, Isn't there some way that Medicaid can be informed of your illness and wait through the whole ordeal? Also, does your state have state plan for lower income families???
If you are disability for 2 years you should be rolled over into Medicare. You would then have to buy a supplemental insurance plus medicare drug insurance. There are many options on these though. Some of them pay well enough that you hardly pay anything at all on tests and hospital and only a certain amount on the drugs.
Did your doc put you on Prednisone along with the mestinon? If he didn't you need to ask about this. My neuro keeps me on 10 mgm of Prednisone every other day as she said it helps control the symptoms and our bodies have some protection against the breathing issues if things "go south".
You will get to feeling better again. The thing is it takes time to get this sorted out. MG is one of the first identified neuro autoimmune diseases and is usually pretty responsive to treatment. The thing is that fatigue and stress can really take a toll on our bodies. They do make an extended release Mestinon that last 12 hours. Many people take it at night. This might be an option along with more of the short acting drug. May not have to wake up at night so much. YOu can get the 180mgm or higher dosage. It is hard to figure but I think the 180 is like having 30 mgm in your blood all of the 12 hours. something like that!!! I have forgotten the details.
Please try and get de-stressed somehow as this really affects the MG. I don't blame you for missing the grandbabies as they are so special. Is there any way that you can live closer to some of the kids??? It would make it so much easier for you when you need help. We are all independent, but there are times when we need someone with us. Good luck and keep us updated. Irish ;D
Kathylee
I know how hard it is to not see the grandchildren. I have an almost three year old grandson, who, due to a family rift, we are not allowed to see. I just wondered in your case if you could see the little one with the help of a webcam?
Sending you healing thoughts and hugs.
Kathyx
I am so sorry to hear all that you have been going through. I will keep you in my prayers . You have gone through so much. It is good to hear from you.
susanep :)
About the destressing....I got several hours of grandbaby time today that sure helps. I'm exhausted right now and having some pain but it was worth it. Even had some good one on one with the 3 month old and he gave me lots of smiles and even tried talking..which is totally sweet when they are that little. See my kids are both here in same town less than 15 minutes away but I'm in such bad shape I don't have the strength to hang out and ceratinly for now no babysitting by my self like I used to once in a while. I thought I'd ask here about what you all do for a laugh tho I know this can be a very personal issue. I like movies but don't find much in the comedy realm that makes me laugh. I used to enjoy MASH years ago and let's see......Robin Williams, Whoopi Goldberg....Mork and Mindy.
About my insurance situation. I navigated going back to school as a divorced mom with no child support and helped with my folks insurance so I'm pretty well schooled in the system. I am on What Iowa calls MEPD which offers medicaid to those on disability who get too much social security to qualifly for medicaid. The program is that if you work even a couple hours a week you qualify. More hours and you have to pay apremium but at my previous 18 per week it was only $28 per month. Its like having REALLY cheap medigap insurance. My folks have medigap and the part D drug coverage yet at times my mom paid $300 per month for one of her inhalers because she'd hit the HOLE that had to be maxed out before it started again. My medicad keeps that from happening to me. But if I don't work I don't have all this to back up the medicare I get cause I'm on disability.
About how long I've had myasthenia. They think I had my first event 20 years ago. Up until this crisis I was the best I'd been in 5 or 6 years. My health took a HUGE improvement when my severe vitamin D deficiency and resulting hyperparathyroidism was delt with. That improved my leg strenth alot. I was homebound completely for 3 years before that. I gues thats why I am so ready to get my life back by pursuing what ever the best course of treatment is. I have already had so many years stolen. And to go back to living in the poverty I was in before I could work my 18 hours a week....well I just cant bear the thought.
I guess I need to ask some direct questions and find out why they are being too vague. I realize they haven't even asked once about my daily routine or how many hours I do work. I talked to a MG support person for the midwest and she said these would be basic questions. How can the senior doc suggest I may need to cut back when he has little information of what that is? Like I just wahed my hair for the first time since BEFORE I went into the hospital.....just been alittle tied up with dressing and finding easy ways to feed myself.
Thanks again all you sweet folks
Kathylee
kathylee, First of all, I am so glad that you got to hold and love that grandbaby. That really makes life more liveable. I am glad to hear that your kids are that close and I can sure understand about the inability to be active when you are so weak and feel so lousy.
I have not hot anything enlightening to say about your insurance issues other than I am wondering if the doc would say you can't work---what happens then with your disability etc.
As far as the activity etc. It would help to make a list of things on a daily basis that you can and cannot do. Make it like a diary and if you accomplish a task write down how long you have to sit and rest before you can do something else. I had great difficulty having the strength to take a shower when my MG was so bad and I just thought I was tired and lazey. Actually, these things sneak up on us so slowly that if a doc does ask us what is hard to do we have trouble answering. We get so used to being in bad shape that we begin to think it is normal.
Write down when and how you get out to get groceries. How you are able to do your dressing, bathing, etc. How the upkeep of the house and laundry goes. How about stairs, weakness in legs and arms with activity, funny breathing episodes. I would have to sit down in the recliner and rest cause I had these episodes that felt like I would quit breathing. Used my inhalers and rested and would slowly improve but never normal the last few years.
How about walking in stores, walking from parking lot to stores etc. There are so many things that one has to stop and actually make yourself assess your life. Hopefully, the doc will help. Make sure to let him know how bad it is. For crying out loud, you just had a MG crisis, he should realize that you are not stable. Ask about medication also as the MG responds better than a lot of other autoimmune diseases to DMARDS and Prednisone. If he has not put you on Prednisone at least for now I think I would be looking for a different doc. You need a doc who is aggressive and proactive. Hope things can get better fast for you. Take it easy so you don't end up in the hospital on a ventilator. Irish ;D
Gonna work on destressing this week..QUESTION? ( for those who know about myasthenia) I have gotten massage for 30 years for comfort and help relax. Would it be safe at this point? The way the MG lady for midwest expained to me is that the reason I had the crisis in the shower is that when I used the hotter water my body in its attempt to cool me increased circulation suddenly speading the harmful antibodies surging thru my body hence the sudden change in breathing and strength. Thoughts? This is the only way I get the comfort of touch ( no close relationships ). I'd hate to lose this.
Kathylee
talked to one of my neuro residents today as a follow up to going to ER last friday. At end I asked if my blood results were back for MG. She read them off. While I didn't recoginze every thing she said I did the acetylcholine antibodie and MUSK. They were both normal. I got off the phone and this wave of fear came over me...fear like I'd done something bad...not unusual for me when the stress is high or the stakes. Now I know I've read that tests can come back negative. And I would think that the mestinon working for breathing crisis and speech issue that came on should be confirming...YES??
And the crisis itself...while no one wants to have this disease a lack of a clear diagnosis is where I've been for years.
Hi Kathylee
I can't answer your questions, as I know little about myasthenia, but I just want to hold your hand for a while. You certainly have had a rough deal, and I hope you get some answers soon.
Kathyx
Katy,
Thanks. WHat a truly sweet thought. I surely needed that. Apparently Doctors do treat whats called seronegative MG...did some research. Its under the premise that their are antibodies that can't be tested for yet..it seems. Hope I have the right doc to go ahead and treat me anyway. The mestinon IS working. Just not as fully as I'd like regarding my legs.
Kathylee
kathylee, If you are showing improvement with the mestinon chances are pretty great that you have myasthenia. There is such a thing as seronegative myasthenia gravis--in other words you have the disease but not the positive tests. I did not have a positive acetylcholine but I did have a severely, extrordanarily high anti-striated muscle antibody test. Ask your doc if he did this one.
Also, if you are having a lot of the symptoms of myasthenia you need to be treated for it. MG patients are not to use hot water when they bath. Use the warmer water that is not such a stress on your body. Do you get any droopy eyelids?? How about weakness in the thighs and the upper arms? I have had trouble for years opening jars and I always thought it was from my arthritis.
I had to trade cars a few years ago because the door was so heavy and hard for me to handle. Little did I know that I was having MG symptoms. I also developed weakness and fatigue that made it hard for me to empty the cat litter box. I just thought I was tired!!!!
Stop and think about the little things that you have changed in your life over the years that are because of muscle weakness. Irish ;D