Julia,
Welcome to the forum, you will find everyone to be very helpful!!

I couldn't find an email address to send the link so I will post here:

http://sickofmg.blogspot.com/

Rachel

Julia,

I typed a lengthy reply--my treatment history and everything but I got interrupted. Went back and finished and figured out how to send it and got the message I wasn't logged on. So I logged in and my message was no longer there. Tell me you received it... but I know you probably did not. My eyes are bothering me so I will have to stop for this evening anyway. I'm so sorry. I will do it again for you though. I THINK I accepted being your friend and I MIGHT have asked to be yours. At this point I don't really know what I've done! We will work it out I promise. Hang in there. I'm looking forward to further conversations with a new friend. We can be a big help to each other.

Grace




[/QUOTE]

Hello Graced

just a tip that the best way not to get logged out after a period that the system sees as "inactivity" while typing lengthy replies...is to use the "remember me" box when you log in. That way you stay logged in until you choose to log out.

hope that helps and that you will feel much better soon.

My husband was diagnosed sept 2008... we are very thankful that his symptoms are limited to his eyes....he was doing pretty good until dr tried to wean him off his prednisone...ended up back at square one. He is now on 15mg prednisone 3000 mg cellcept and 60 mg mestinon 4xs a day. the big change was when they took him off the prednisone...i would love to see what would happen if they tried upping his prednisone. cellcept has not seemed to help at all . he was on azathioprine and had good results but had a reaction to it so had to stop...

Hi,

Am pleased to receive a response from you. I started on 20 mg of predisone 9/8/10 a day. My neck was losing strength. That dosage worked well for about 3 weeks. I started on 30 mg of prednisone on 10/10/10. All I was taking at this point was the predisone and three 60 mg pills of generic for Mestinon. My Dr. wanted to put me on something like Cellcept and I didn't want to do it. So he put me on 40 mg of prednisone on 10/20/10, That was bad. I was like in a fog. I heard what everybody said etc. but it was like they were a mile away and I was slow thinking. I was/am working full time and that wasn't working very well for me. So I agreed to take Cellcept (1000 mg a day) and started that on 11/6/10. I cut back to 30 mg of Prednisone on 11/16/10. My neck got better fairly shortly and I've been on 30 mg of Prednisone ever since. Tried to cut back on the prednisone to 20 mg on 12/28/10 and by 1/6/11 deeloped double vision. So I increased Prednisone back to 30 mg and my eyes got better. On 1/25/11 Dr. increased my generic for Cellcept from 1000 mg/day to 2000/day. I have had problems with double vision and light sensitivity and one eye is droopy for quite awhile now. But my neck is strong and my Neuro said that is a sign the Cellcept is working. He also said eyes are the most difficult problem to resolve in MG. I was doing so well in March my Neuro would have tried decreasing the prednisone again but I had a colonoscopy scheduled in May and it seemed whenever we decreased Predisone I developed problems and I wanted to get the colonoscopy done before I tried that again. My last appt in May I was having swallowing issues again and a new symptom--lips wouldn't work well when I brushed my teeth and tried to spit. So he didn't want to decrease the predisone now. Said we would try to do that this fall and allow the Cellcept more time in my system. Something I have just started noticing is I'm bruising now. When I just took my blood pressure day before yesterday--where the cuff was on my wrist I have a nice bruise. Before that it was just very small bruises where I might have have a little pressure placed there. I am going to go on my MG sites and ask others if they've experienced this. I am wondering if it's the prednisone, the cellcept or a combination of both. I suspect it's because the Cellcept is starting to kick in better now. I started on the generic for Cellcept Nov. 2010. It can take a year before you see results from that. I had had my colonoscopy cancelled once because I got sick and had double vision so bad I was out of work for a week the end of Jan 2011. I think I was stressed about having to cancel this May colonoscopy and that perhaps was why my symptoms started to mildly come back and I even developed the mild lip stiffness. Since I just had the colonoscopy this week I can already see some improvement in everything. Stress and fatigue play with how we feel. I haven't felt really peppy for awhile but I intend to respond to Julia who I promised I would start at the beginning of my diagnosis and the meds I started on and my history of meds etc. up until now. I hope to do that over this holiday when I have some extra time to tackle it. I did it once and didn't know what I was doing on this site-and lost everything before it got out to people. I won't be leaving in the middle of creating it for a long time again! I felt so bad. But I am going to do it. With MG you can feel good today--and tomorrow be put out of work you're feeling so bad...

All I can say is--15 mg of prednisone wouldn't work for me! For me that would almost be like a maintenance dosage while the Cellcept kept increasing in its good effect on my body. I know my Dr. is VERY eager to get me down off my 30 mg of predisone and I won't be on that one day longer than I seem to need to be. I have about all the side effects of prednisone and I hate it--but I do really like being able to hold my head up normally. Life is so much better so I tolerate what I hate about prednisone. It's a shame it can take so long for meds like Cellcept to kick in. A year is a long time to waste on something that isn't going to work on you specifically. What works great for one of us may not be effective at all on somebody else. I would ask the Dr. if he thought increasing the prednisone might helpyour husband. Can't hurt to ask and have him explain why he feels the way he does. I wish you both the best! Take care...

Grace (Hope this goes successfully!)

I have seen friends have a lot of bruising problems when on prednisone - so I would expect that's the culprit.
I don't notice a weak neck but I have 2 herniated discs in my neck and in a lot of pain - my fear is the MG has weakened my neck causing the disc to herniate - so not sure I feel comfortable having them fixed as maybe just more will do the same - however the pain is at a level I cannot tolerate either - geez! And then there is the risk of going under anesthesia also - what a wonderful disease to have!

Grace, I'm wiped out and only skimming, but I think you said you were noticing unusual bruising. This is something you should report to your doctor right away (I mean call him--don't wait for the next appointment). I think it could mean that one of your meds is making your platelet count go down, which can be dangerous.

Abby

Hi, Julia

This is Grace. I'm the new person who had trouble responding to a message you had posted. You were wondering about others who have MG and what their treatment had been. Here is mine with apologies for being so long getting back to you. Hope it goes this time correctly. If you have any questions, feel free to ask. I have never been without choking issues--it's just the degree I have it and I struggle with eye issues. Which impacts how much I can get on my home computer because I work full time--on a computer a lot.

Here goes:

Diagnosis: MuSk Positive Myasthenia Gravis MEDICAL HISTORY

Displayed symptoms of both serious choking and slurring and saw my PCP first on 6/30/10. The next morning I was at my new Neurologist's office as his first patient of the day.

7/1/10 - Started taking ˝ of a 60 mg pill of pyridostigmine (generic for Mestinon) 3 times a day. Had immediate improvement in swallowing but speech still slurred on 7/8/10. Started taking four ˝ pills a day on 7/11/11. By 7/13/11 I was not slurring.

Bloodwork sent to Mayo Clinic for Myasthenia Gravis test came back negative. Stopped taking pills around 7/18/11.

August 2010 Could clearly see fatigue affected my swallowing and speech. I was not taking medication and developed double vision at end of busy week. (Working full time) My Dr. sent more bloodwork for testing but this time also sent it to Athena Diagnostics.

Started taking whole 60 mg pyridostigmine pills 3 times a day.

Had an EMG Test done on one leg, one arm and tongue. Had a chest X-ray.
EMG test ruled out ALS Disease. MG a possibility. Chest X-ray fine. An MRI was fine.

Was choking and tongue rubbery feeling and slurring so by end of month increased to four 60 mg pills a day of pyridostigmine.

By end of August my neck was losing strength.

9/3/10 Got a diagnosis. Mayo Clinic came back a second time with a negative diagnosis for Myasthenia Gravis (MG). But Athena Diagnostics came back with a diagnosis of MuSk Positive Myasthenia Gravis. They are the only lab in the country who can test for that specific type of Myasthenia Gravis. Typically only women get it and unlike other types the number of antibodies in your blood does indicate severity of the disease. It is so rare Athena only runs the test once a month—it is a very expensive test.

Got put on 20 mg of prednisone daily. Very quickly my neck strength showed improvement (a week). But after two weeks my neck started to be a little weaker again. The pyridostigmine helps the prednisone to work—need both.

After (1) month prednisone was increased from 20 mg to 30 mg daily. Two weeks later increased from 30 mg to 40 mg. Had swallowing/choking, weakened neck issues still.

Nov 2010 Started taking 1000 mg Cellcept a day. Half in morning and half at night.

Decreased prednisone from 40 mg back to 30 mg daily. I have round face and red areas on face and neck from the prednisone.

Got a flu shot and will take the shingles vaccine when my Dr. receives it.

Taking four full 60 mg pills of pyridostigmine a day.

12/1/10 Neck doing well. My gums are sore, teeth are sensitive to cold-even cold air/breathing it in.
Skin is dry and easier to split and slow to heal. Dr. thinks Cellcept is helping neck.
Cut back from 4 to 3 60 mg pyridostigmine pills daily
Taking 30 mg of prednisone daily.
Taking 1000 mg of Mycophenalate Mofetil (generic for Cellcept) a day (split in half am/pm)
Slurring good, swallowing issues much improved.

Jan 2011 Developed double vision after reducing prednisone from 30 mg daily to 20 mg because I was doing so well. Took about 9 days to develop. Increased it back again to 30 mg and eyes improved in abt a week.

Did well until big temp drop to -7°F one morning. By that night had double vision. Next day was pretty bad. Got put out of work for a week and had my prednisone doubled from 30 mg to 60 mg daily for 4 days. On 4th day double vision stopped. I went back to 30 mg of Prednisone again the next day.

Feg 2011 My eyes bloodshot and uncomfortable. Dark glasses worn indoors really helped comfort of eyes. I work at a computer screen daily at my job... Had annual eye exam. Have dry eyes. Dr. gave me Refresh eye lubricant eye drops. Does make my eyes feel better.

Mar 2011 Doing well—neck strong. Swallowing best it's ever been. No slurring.

Apr 2011 Broken blood vessels in eyes and bloodshot. Working at computer more, stressed and tired.

May 2011 Going for a sleep apnea overnight sleep study in June. Have a lot of trouble sleeping. If I get 4 hrs sleep a night it's a good night.

June 2011 Had a bone density test done. Side effect of Mycophenolate Mofetil (generic for Cellcept) is osteoporosis. I haven't gotten the results yet but indications were I was OK.

I am scheduled to have an overnight sleep study done for sleep apnea this month.

The goal here for me is to get me off Prednisone and all the other meds and have Cellcept alone take care of my symptoms. I must pretty much have all the side effects of Prednisone--thinning hair on my head, difficulty sleeping, hump on back of my neck--you name it... Prednisone is both good--and horrible. I really want to get off it as quickly as possible but it can be difficult. 30 mg daily is getting up there in dosage. Some people only take 5 mg or so every other day...

But it's not what I wish that happens... Again, I'm sorry it's taken me so long to get back to you. I always have to say--I'm not fast--just dependable!

Best of luck to you, Julia.

Grace

Grace,

Thanks for giving such clear details.

I think it gives a lot of hope to people, and also justifies my personal efforts to increase the awareness and early diagnosis of this illness.

MG is a treatable disease, and quite likely most people can do very well, if diagnosed and managed properly, and it is quite concerning that so many aren't. (even if it is just a small percent of the patients, world-wide those are significant numbers).

It seems like you have had excellent physicians, who sent the right tests, and treated you properly, from the very early days of your illness.

I know it is hard to deal with this illness, side effects of meds etc. But, in that sense you were very fortunate and I am sure it will have a significant effect on your long term prognosis and chance for full recovery.

The first episode of my illness, was 20 years ago. Long before the discovery of MuSK. I was clinically diagnosed with MG, by an excellent neurology resident. I then had a rapid/transient worsening of my illness. After a fairly traumatic hospitalization I was told (by two leading experts) that I have 'nothing" and should learn to live with the relatively mild symptoms I had.
(which I did).

15 years later, I was admitted to the ICU, with a myasthenic crisis. Diagnosed clinically by a neurologist (not an MG expert), and the head of ICU. After a 3 week hospitalization and multiple plasmapheresis, I was referred to an MG expert who couldn't make his mind if I "really" had a myasthenic crisis/myasthenia or not.

Only 5 years later, when I required intermittent respiratory support, and assistance in most of the activities of daily living was my illness finally diagnosed using very sophisticated tests, including direct measurement of my respiratory muscles and an experimental test for MuSK antibodies. (because the usual test was normal in my case).

Your story is how this illness should be managed. Mine is how it should not.

Alice

Hi, Julia

Because I'm not very "good" at this, I went awhile feeling very alone and only accidentally found the site I'm going to share with you. It is a wonderful group and I highly recommend it. I'm just going to type what is at the bottom of a message there and hope you can track it back. The name of the group is:
MG Climbing the Hill Together.

I just got a message that I cannot post links unless I have 10 posts--and I only have 8! If I get 10 posts, I'll try again!

Sorry it's not a clear direction...

Hope to hear from you and that you're doing well!

Grace