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06/22/2008 03:34 PM

Just Diagnosed

Captain
CaptainPosts: 170
Member

Hello,

I was just diagnosed with MG about 3 months ago..and to be honest with you it has been the worse experiance of my life. Having many auto immune diseases I have to say MG has been the hardest for me to deal with.

I was hospitaluzed for a month given all possible treatments and nothing works as I'm allergic to Imuran IVIG lowered my blood level to a dangerous level and plasmaphresis only lasts a week. I have already had 3 rounds of plasmaphresis (5 days per round) and my symptoms still exist.

I'm currently on Mestinon and Prednisone and those don't seem to work.

I hate the fact that I have no control of this disease. I can't even enjoy the nice weather as being in the sun makes my symptoms worse....

If anyone has any suggestions as to how I can better control or deal with MG it would be greatly appreciated..

Captian

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06/22/2008 08:45 PM
LupieToons
LupieToons  
Posts: 358
Member
I'm an Advocate

Hello Captain,

I can hear your frustration loud and clear. Also having multiple autoimmune illnesses along with MG makes your health situation much more complex. I know, brother; I'm there, too. Your allergy to IVIG and the ineffectiveness of the plasmapheresis makes your MG harder to manage. I don't know how you are managing your multiple overlap symptoms due to those factors, alone.

Add to the above that your Mestinon and Prednisone don't seem to work makes me wonder if you were accurately diagnosed.(?) Did you get a second opinion or react positively to the Tensilon test?

My diagnosis was made in 1999 but not until I sought the experience of a second neurologist. Being a female, the first one prescribed Xanax and because I am seronegative, the doctor said he "told me so" and the labs proved I did not have MG. Note, however, that no EMG nor an extensive physical neurological exam, chest CT, etc. were done. He did, though, have me see his resident neuropsychologist (who incidentally did reveal through testing that motor neuron symptoms were evident and ocular problems).

I wish I had something constructive to help you with coping mechanisms as that is half the battle. You more than likely have enough to keep you busy with all your daily medications. If your medicine cabinet looks like mine, we could go into business as a mini pharmacy!

As to how you can better deal with the MG, and given the lack of benefit of the MG treatments you are presently undertaking, I would get a second opinion. My first questions are: was a Tensilon test performed; was an EMG performed; a chest CT; and finally, what were your lab results like (i.e. AChR antibodies, MuSK antibodies)?

And let me give you a tip about chest CTs: As my neurologist explained to me, a CT is not all that revealing. For example, my CT report revealed a "mildly hyperplastic" thymus gland. Two weeks later, the surgeon removed a 45 gram thymus from my chest, having to scrape parts of it off my inominate (neck) veins and pericardial sac. The average adult thymus gland weighs approximately 15 grams. Also, there was an area of "encapsulation" (i.e. beginning of tumor growth) on my thymus gland. While in ICU, my neurologist and surgeon both told me they got my thymus gland "out in the nick of time." So much for CT scans! Fortunately, I noticed an improvement in some symptoms four days after surgery. I still have ocular problems that Mestinon sometimes helps. But I also have a connective tissue disease (lupus) and have had a small stroke which doc believes is causing the extra ocular symptoms.

Truly, I lucked out with my second (and current) neurologist who specializes in myasthenia gravis. I don't know where you are but if you would like a second opinion, please feel free to leave me a private message or email me and I'll give you the information.

Other than all the above, Captain, and which is easier said than done, acceptance of yet another autoimmune disease leaves one to wonder "what next" and especially if the treatments are not working. However, one more important fact: are any of your medications for your other AI illnesses contraindicated with MG meds? Like thyroid HRT? If you go to www.myasthenia.org, you will find a list of contraindicated medications which you should print off or copy and give to ALL of your physicians. You wouldn't think that an antibiotic like penicillin or medications with more than enough magnesium would be a bother, but they can cause you huge problems.

I'm sorry this is so long, Captain, but then MG alone is complicated and unpredictable. Adding other diseases into the mix doesn't make pancake batter...if you know what I mean.

Sharry "Lynne" Smith


06/23/2008 05:43 PM
Captain
CaptainPosts: 170
Member

To be honest with you when I first went to the hospital regarding my sysmptoms They said I was ok and nothing was wrong with me...as my sysmptoms got worse I got frusterated and started doing my own research...via the web of course.

It was me who diagnosed me with having myasthenia gravis. So I got my sister to drive me to the hospital and I told them I wanted to be tested for MG. They did the Tensilon test and it was positive for MG.

They also persormed alot of the other tests and thye all came back positive for MG.

I actually just came back from my doctors office about an hour ago and he advised me that even though he is waitng for my anti-musk test to come back from Duke University (I'm from Calagary, Alberta, Canada) which takes 3-4 months, he believes I have anti-Musk MG. Which is harder to treat.

They are going to put in a semi permanent central line and do plasmaphresis every week. As it's seems it's the only thing I respond to but the treatment only lasts a week for me.

My docotor is an amazing doctor and is involved in alot of the research of MG. So I trust him and his treatments. I will also be starting Humira shortly which is suppose to help with MG and my Crohnes Disease.

So I will keep you posted as to how things go for me...I don't even know one person who has this condition so I kind of feel alone in this matter. Thanks for taking the time to respond as I know I'm not suffering alone with this unwanted DISEASE.


08/24/2008 12:07 PM
cindylee
cindylee  
Posts: 57
Member

Captain...

You know I just now realized that what I was posting to different people on here was going into a private messages area. DUH!!!

I have been misdiagnosed for about 20 years now....and still with the clear MG diagnosis(from several months ago) the doctors are still unclear about the underlying reasons for it. It's gone from MS, to Fibro....to inflammatory arthritis(where I responded well to methotrexate until they introduced Enbrel)where I got very sick with a bronchial infection....so I was taken off. A few months later....the MG reared it's head clearly.

So...the Mestinon works for certain things like eye and mouth drooping....muscles in my neck....and usually for my voice. But...after gall bladder surgery a month ago...my Mestinon is not working all that well. Distorted face is cleared up....but my voice is pretty much shot. Very painful to speak....and I'm very weak....and no energy.

So....my doctor wants to do plasmapherisis. Will probably be done sometime this coming week. Not looking forward to it..but if it works.....then great. I am very sensitive to all the high powered steroid drugs... or the disease modifying drugs....I get all the side effects........so they are worse than any benefit I get.

I have been sick for so long, I have along the way developed many coping skills. I think the most important part of dealing with MG is figuring out what causes you stress. Whatever it is, and whatever you can get rid of is the trick. And of course just flat out staying out of the heat. That is THE worst thing for MG.

Now I'm lucky in many ways. I live alone....my children are grown and have take over as my caregivers....I don't go out very much....I haven't worked for over 10 years outside the home. I do life coaching online and write for a newspaper, and hopefully will get a book published soon. But...for those who are still having to work....or have not figured out how to clear out those stressful areas of their life.....I feel for you more than you know.

I basically ran myself into a ditch years ago....because I was determined to keep up with the rest of the world. I had one problem.....my body had other plans. It took a long time for me to finally be OK with that........but I got there.

I had to start looking at what was left in my life to be thankful for....and there was alot. So what if I can't go for a walk, run, bike, dance or work like everyone else. I just lead a different sort of life.

Is it fair? NO......is it hard somedays....ABSOLUTELY......but I just try to focus on how I can help others instead of giving into the disease.

I'm rambling....sorry. And also sorry that you have not gotten the kind of response you are looking for in here. I just sort of start messaging people...striking up conversations....but again...it doesn't do much good if everyone can't read them.

So please share your situation. I'm sure many would learn from your own personal experience. Bottom line......this whole thing is a pain...no fun...something we would all like to just toss out the window and just get on with our lives. But...I guess reality sets in and rules.....this is your life....for whatever reason.

Don't give up....you will find something to help....and in the meantime...do something about your stress level.

I hope I've said something that helped.

Cindylee


08/24/2008 04:57 PM
Captain
CaptainPosts: 170
Member

Hi Cindylee

Thanks for the inofrmation.

Yes frusteration is what I feel everyday that I wake up. I have been dealing with alot of medical issues for the past 20 yrs. SO I have learned to keep my stress to a minimal.

My frusteration with this disease is not being able to communicate with people, not being to go outside to enjoy the weather (sun wrecks my facila muscles) and that fact that I can't fully type this respose cause my fingers give up.

I feel ...I really don't know how I feel I just want to be the person I was a year ago.

Feeling helpless is really what I feel every day because I can't do my day to day activities cause my muscles are 2 weak.

I'm still working full time...when I can make it into the office I have the option to work at home as well.

My symptoms are: unable to swallow choke on my own saliva, problems breathing, can't spit or drink from a glass lips to weak. Eyes are droopy and have blurry vision (no double)can't smile face muscles are to weak, can't hold my own head up, walking is a problem as my legs become to weak and I can't take a proper shower cause my arms give up way to fast on me.

My frusteration really is nothing they have tried on me works. I have had every possible treatment out there...even 19 plasmpherisis treatment Just glad thye are covered otherwise I would never be able to come up with $20.000 per treatment. That's one thing I'm glad for being in Canada that all the treatments are covered and I don't have to worry about hospital expeses.

I'm not a quitter just some days this disease gets the best of me because I know I can breath swallow, and do all the things I know can't do.

I have a loving and extremely supportive family. My work is extremely supportive as well. But most of all the man in my life has been my life savour. His support aand understanding has kept me going. Without him I'm not to sure where I would be right now.

So no I will not let this disease get the best of me...as I plan on fighting it ever step of the way. Cause sooner or later something has to give, Lets hope sooner then later.


08/24/2008 05:35 PM
cindylee
cindylee  
Posts: 57
Member

Captain...

I feel for you...I really do. Sounds like you are really having a hard time and just want your old life back. I hope you see that there are so many that are in the same shape......just varying degrees.

I'm so glad to hear that you have a strong support system for that is SO important to have when you are this sick. I don't know what I would do if I didn't have my children around....or my friends that always have my back. Something to be thankful for....for sure.

I completely understand your frustration. I haven't quite gotten used to the fact that I can't really talk anymore. Its very painful...so I limit my conversations to the kids and if someone is having a really bad time...I can still listen. It's funny somtimes how bad I miss singing along with the radio oldies music. It's just not right that I can't do that anymore.

I'm also glad to hear that you are able to keep your stress level down. That will steal every bit of energy or strength I have if I allow it. Again..my favorite word is NO.

Have you considered taking disability....or are you determined to keep working? If you're able to work from home...thats great. I'm lucky in that respect too....though most of what I do I don't charge for. I've been on disability for over 10 years now.

I'm glad you feel comfortable enough to share in here.....not only will it help you to vent...but just remember you are helping so many in here.

Hugs...

Cindylee


08/24/2008 07:19 PM
Captain
CaptainPosts: 170
Member

I'm really glad I'm able to talk to someone who understands what I'm going through. Even though the support is there it's hard to make people understand what it is your feeling when these symptoms arise.

Singing to the oldies in my car is something I still do when I'm alone. at lease no one hears me and know what I'm saying so really that's what counts. When others are in the car then I don't sing.

The one good thing I have on my side is being able to use sign language sometging I learned 5 yrs ago now I'm trying to teach those around me it that way I can communicate. otherwise it's back to writing my conversation down,,,guess it's better then nothing.


08/25/2008 04:07 AM
cindylee
cindylee  
Posts: 57
Member

Can I ask you....what do experience when you try to talk? And on a daily basis...do you feel like you've been hit by a truck?

Trying to see if anyone else has some of the same sensations I do.


08/25/2008 08:39 AM
Captain
CaptainPosts: 170
Member

Well when I'm trying to talk I sound like (pardon this)a retard. My voice muscle is to weak to get the words out so I talk in slang like if I'm say do you want to go to the store I just say store as it's easier then saying the whole sentance. People around me have learned to understand me when I talk...and if I can't talk at all I just write everything down. carry a book with me at all time. Answering the phone is something I don't do...txt alot.

I don't feel like I have been hit by a truck I just feel like when your in a dream and your trying to run from someone but your not able to because your body won't let you...hope that makes sense. Like when I'm typing right now my fingers give up because i cant extend them to the keys so I have to type with one finger.


08/25/2008 09:32 AM
cindylee
cindylee  
Posts: 57
Member

yes.....the same with my voice. It feels like it takes every bit of energy I've got just to get the words to come out...and then if I push it....it is actually painful.

I understand what you were saying ..like not being able to move in a dream...yes.....me too....but do you feel BAD...I mean really BAD...like you have the flu all the time?

Thanks for sharing by the way.

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