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Myasthenia Gravis- Thymectomy or Plasmapheresis or immune globulin or sth else...Pls suggest

Posted , 4 users are following.

hemantG
hemantG

Hi

My Father  aged 72 , has been diagnosed with Myasthenia Gravis in April 2014.

He was given Immunosuppression azathioprine for some months but with this medicines it resulted in hepatotoxicity.

The medicines were then stopped and as a result it resulted in the crisis.

He suddenly fall down while talking and needed to be rushed to the hospital in Dec 2014

He was given 6 treatment of Plasmapheresis as the only option at that time as he almost lost the control of his breathing system

With so much treatment he became very weak

He came home in Mid Jan 2015 after spending 20 days in ICU and since then has been taking following medicines

-Destinon 60mg qid

-Tab Predisolone 50 mg od

-Tab Cellcept 500 mg od

We were hoping that his weakness would reduce but we have seen that its not reducing.

2-3 days back he fell again while trying to walk and hurt is back as well.

He has been admitted to the hospital again now and planned to be given another 5-6 cycles of Plasmapheresis

Below are some of the options we are considering

Option 1 ) On reading some reviews on the internet it is mentioned that Thymectomy is an option, but it seems it is not suggested for people above 60 age and he is 72..

Option 2) Continue on the medications given now and hope that once Plasmapheresis is over he would recover

Option 3) Give high-dose intravenous immune globulin. It is suggested that 25 such injections would be needed for him

Please share your views and the best possible future treatments

Thanks for reading

Regards

Hemant

 

0 likes, 5 replies

5 Replies

  • beth21928
    beth21928 hemantG

    Posted

    Hi just read your letter and thought I would reply you will no doubt need a seat to read this and for that Iam sorry.

    Last year i was writing to this forum and others but gave up owing to my attendance at many clinics. here is the story.

    Gave up on any health problems and stayed away from g.p for just over 16 years! If you had the doctors I had you would no doubt aggree.

    4 years ago had an injury to shoulder and back seen at M/injuries never xrayed pain was very bad so went and used savings to see an osteopath. did help shoulder pain but not back and leg pain THIS WAS COSTING £2,000 IN TOTAL and I decided to finally see g.p walked in as if he had seen my hours ago and not 16years didnt lift head from computor told him the problem still no eye contact went into drawer handed me a self referal for physio prescription for co-codamol the answer to all problems.Waited 18 weeks to be seen and that was the BIGGEST WASTE OF TIME as she didnt think anything would work cut a long story short after months of treatment I was sent by physio to a podiatrist who asked what the HELL are you doing here you need to see an orthopaedic consultant and I can refer you---waited 17weeks only to be told why did you not come sooner!was examined and that very week had an emergency M.R.I scan of whole of spine however waited 10 weeks to be given result which wasnt good loads of arthritis neck thoracic and nerve root compression in lower spine so sorry nothing can be done but I will send you back to physio. Why were you sent back to us I dont really know pair of insoles given and a wee chat.Consultant asked g.p to give Naproxen shortly afterwards I took palpatations and was taken off by N.H.S 24. Ended up at cardiologist E.C.G ECHOCARDIOGRAM CAROTID SCAN told nothing wrong changed to another Diclofenic taken off this.

    By now I felt terrible but picked myself up had wisdom tooth extracted and before  surgery was seen by a fantastic PROF AT OUR DENTAL HOSPITAL did pre op check medicines bloods general health one month later I had op and Prof asked to see me as he wasnt happy with bloods asked g.p to run more bloods but he said there was no need to however Prof did them and sent me to an E.N.T consultant because i was having difficulty swallowing and alarm bells started to ring. Seen by him Barium Swallow--biopsy scan and C.T of thyroid came back that i have my thyroid wrapped round oesophagus sent to lady consultant recently who operates on this but will have to wait a year!

    She ran bloods and found iron was very low just as the Prof had said and g.p didnt do also found vit d was low.

    During all this new g.p sent me with muscle weakness in eye to see consultant that was 18 weeks I waited but at least he found out the problem with the way I felt and ran a special test for MYASTHENIA GRAVIS so at least awful as it may sound a diagnosis has been found-----now ive to wait 15 weeks to see Neurologist.!

    While waiting remember the Cardiologist said nothing was wrong? someone decided to read my 24 hour tape and found that I am missing 6 heartbeats so Ive been but on an Anticoagulant and also have palpatations.

    The reason why I write this is to show you and others out there go by your instincts and if you dont feel well put the pressure on and perhaps you will not have to wait 3 years being passed from pillar to post.

    Myasthenia is not the end years ago it was and they have come a long way with medication.

    Food for thought I had the antibodies test 18years ago for M.G and it was positive but was given no medication and C.T scan showed Thymus was o.k. however new C.T scan shows its missing ---Where has it gone? I didnt remove it.

    Happy to say that the 2 g.ps retired and now there is new blood in the surgery.

    GOOD LUCK

  • rick97983
    rick97983 hemantG

    Posted

    I am a 66 year-old male. I was perfectly healthu until a few years agowhen struck with MG.  It started with my eyes and has progressed to many other areas effecting same symptoms as your father.  It seems to go in waves - ok for awhile then gets severe.   I have found that the immuno-globulin (IGIV) is a good thing, but expensive.  I get an infusion every 3 weeks. I also take Mestinon and prednisone (30 mg right now). One thing to mention is that stress, lack of sleep,and the weather effect how I am doing. The real cold weather can effect me adversely, but the hot, humid summer heat is the worse. Mild exercise is essential to counteract the weakness. I take yoga and tai-chi classes and they have helped immensely. 
  • rick97983
    rick97983 hemantG

    Posted

    ...also, I had a thymectomy in Feb., 2015 and it was useless.I was over 60 so that had something to do with it.  Unless one has a tumor on thymus, I don'trecommend this surgery.

    • hemantG
      hemantG rick97983

      Posted

      Thanks for response. My Father condition is not improving much. He has been on the similar medication as yours, however due to lots of medicines, his digestion has gone very bad. He is not able to eat anything properly and got ulcers in his mouth..

      We are currently taking advice from a Gasteronologist but even a course of medicine from him does not seem to work. We are gonna show him again to another doctor.. lets see how it goes...

  • sudhindrajos
    sudhindrajos hemantG

    Posted

    Hi,

    How is your father now? My Father 79yrs old also having myasthenia gravis for last 8 years. He is under medication . Now he started feeling weakness , not able stand and also not able eat himself. Now Neurologist suggests to go for IVIg or Plasmapheresis . I am not sure how this treatment will be effective . Do we need to get it done often? I am really scared. Recently he has undergone lumbar spine surgery as well.

    Any suggestions will be highly appreciated.

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