[rach73]

Hi,

I thought I would make you all chuckle and also update you at the same time.

So 12 months ago I was told there was nothing organically wrong with me other than low B12. My muscle weakness, ptosis, double vision, nystagmus, vomiting, nausea, loss of appetite, low blood pressure and joint pain were all symptoms produced by my vivid imagination!LOL Conversion disorder and somatization disorder were hinted at in my notes.

For years it seemed I travelled in the diagnostic wilderness with only you guys on the forum and a couple of other forums for comfort and support for which I am eternally grateful.

Fast forward 12 months and I have changed GP's and hospital consultants. So far this year I have been diagnosed with Postural Orthostatic Tachycardia Syndrome, Low Blood pressure, Hidradenitis Suppurativa ( a chronic skin condition), gastroparesis ( paralysed stomach that works in fits and starts), IBS and Ehler Danlos Syndrome Type 3 (joint hypermobilty).

I saw a rheumy last week who diagnosed the EDS 3 and on the letter I received back from her she writes under the list of diagnosis - possible myasthenia.

I never mentioned MG at all during the consult despite my eye being completely closed and the right side of my face looking like I had a stroke. She had all the info there regarding all my negative tests and yet still she suggests its MG - because I respond to mestinon , my old neuro disputed this.

On top of that she has gone absolutely mental at the fact my neuro discharged me a year ago and has demanded that he sees me again in his clinic. She knows I saw a world leading expert in Oxford last year who also dismissed MG as a diagnosis.

So I am currently waiting to go back and see my old neuro (we live in a small area with only one hospital for 50 miles) and I am guessing he will be really thrilled to see me back in his waiting room. LOL

Every Dr I ever see says its MG....... as long as they aren't neurologists. This one has finally committed herself to paper. When I got the letter from her on Saturday along with the £250 bill as we paid to go private I nearly fell off my chair laughing as during the consult neither of us mentioned MG.

Funny how things turn out. I don't expect I will get an MG diagnosis anytime soon, but for all of you in the diagnostic wilderness there is hope. Keep fighting and dont lose the faith.

Rach

[suev]

Rach - you should write a book!! It could be a macabre comedy = = and some of your neuro's could be courted perhaps for 'clowns in the closet' castings.

I am so impressed that you have kept such a wonderful outlook after all the c*** you have been put through over the years by your various docs.

I love your wit and hope you really are going to feel and be better soon.

[Stellatum]

Rach, I appreciate the update! I will tell you, throughout my own journey through the diagnostic wilderness, which only lasted 15 months or so, my biggest fear (I'm not saying this is rational) was not that I had ALS or something equally severe--it was that my symptoms would be dismissed as all in my head. That was the one outcome I couldn't even imagine learning to face.

So while it's horrible that you have so many illnesses--and that you still don't have all the diagnoses pinned down--I am so, so glad to hear that you now have doctors who are taking them seriously.

Abby

[rach73]

Thank you for all your lovely comments and continued support.

For those of you new to the forum and who don't know my story please feel free to visit my blog which tells my tragic tale LOL!

http://themyastheniakid.blogspot.com/

Rach

[AnnieB3]

Well, Rach, it's sort of "sick humor," isn't it? Funny but not.

Why is it the norm for women to go through this nonsense? And the fact that everyone seems so accepting of women going through it is worse. No offense to any men who have gone through it but I guess we women are fragile pieces of glass who would fall apart at even the mere mention of a disease, let alone being able to live with one.

You know I read your blog already and really enjoy it. I was a bit disturbed by the suggestion of you going on Gabapentin! That is Neurontin. It has been shown to exacerbate MG, bring on MG and is somewhat suspected of causing MG. You can find articles on PubMed about it and MG. Approach drugs with caution, ok? Those pain meds can make CNS issues worse; POTS too.

I wish you could come here and have that procedure they have done on the vagus nerve where they sort of electrically "charge" it and bring it back to life (so you don't have gastroparesis anymore).

I'm grateful that you have come full circle and that, by your own perseverance under extreme duress, you have someone stating the obvious finally. I'd rather have an emotionless doctor who gets it than a nice one who can't buy a clue.

You just keep taking care of yourself the best you can and enjoy each day, like I know you do. Maybe there's a publisher over there who would pay you for your story. Someone needs to shine a light on the UK's unhealthy health system.


Annie

[Shari_W]

Rach,
I just don't get it. For the life of me I cannot understand why a diagnosis of MG is not given when a person's condition improves once they begin Mestinon. I've heard your story many times over the years since MG entered my life in 1995.

What other medical conditions does mestinon treat?????

Myasthenia Gravis isn't a textbook disease like so many Neuros try to make it out to be. It is what they call a "snowflake" disease. Just like the pattern of each snowflake is different, many times MG can be the same way. That's why one treatment plan may work on one person but not another. Also, if you have many things going on, it doesn't mean that you don't have MG as well.

I'd like to be a fly on the wall when you go back to that Neuro...lol (Hopefully you understand what that means. I don't think you are in the U.S. so if you don't, then it just means that I would love to be there to see the look on his face when he sees you in his office again)

Good Luck, keep the faith and fight on.

My prayers are with you

Shari

[rach73]

Thank you again for taking the time to comment, especially when I'm not on here very often. Since 2010 I have felt a bit of a fraud associating myself with MG and have deliberately distanced myself from MG forums.

Not only do I respond to mestinon but I am also positive on the ice pack test, MG is the only disease that responds to this. It amazes me that the Dr's seem to think I can make these symptoms appear and disappear on a whim!

Thanks for the heads up re - gabapentin, they want me to take it due to the burning I have in my left leg and to try and get on top of my pain. I didn't realize there was a problem with this drug and MG. This could be tricky as officially I don't have MG and voicing concerns about it may cause some issues.

I am in so much pain at the moment I am at my wits end. I am hardly sleeping and I am waking up shaking with the pain. I have rung my Dr's practice as I just can't get on top of it. Its been worse since the rheumy visit last week as she made me walk down the corridor telling me "just because you are in pain doesn't mean there is anything wrong". Well something is wrong now.

Thank you so much also for taking the time to read my blog. I hope to give a realistic portrait of what life is like with chronic illness and in the diagnostic wilderness. My aim is to help others that are going through the same thing realize that they aren't alone and with support they can get the answers.

I have already achieved part of that goal as someone in a far off land has just been diagnosed with EDS after their Dr heard my story. Is it greedy to want to help one more?

The medical profession needs to start seeing Zebra's and not just horses when they hear hoof beats.

Thanks again

Rach

[rach73]

Hi,

I posted a pic on my blog today to show the extent of my ptosis. Around 30 mins after the pic was taken my left eye joined in and I was virtually blind. Unless I held my eyes open but then my vision was blurred!

Does anyone else get it as good as I do? Obviously its not a competition! LOL

Rach

[AnnieB3]

Rach, For me, it all depends upon what I've been doing. Just getting heated up doing laundry drops both eyes, though they don't become near to being closed. They get worse the more I do or if I'm out in hot weather. If they get to the point of being closed more than halfway, I know I'm in trouble.

Yes, you are very brave indeed to post a ptosis pic! LOL. You have perfect skin, beautiful red hair and gorgeous eyes . . . what's to feel bad about? Well, if you hit that sheep crossing the road because you couldn't see, now that would be something to feel bad about. Or is that an English myth?


Annie

Here, Rach, another pic that looks like you! Though with the opposite side of the face.

http://www.myasthenia.org/WhatisMG/T...icmethods.aspx

[rach73]

Thanks so much for taking a look and for the lovely comments you wrote.

I can cope with having zero energy, limbs that go blue at the drop of a hat, feeling sick etc. What has completely destroyed my confidence is the ptosis. It makes me feel facially disfigured. Some people may think that facially disfigured is too strong a term, but I can only tell you how I feel about the way it makes me look.

It took enormous courage to post that pic. I am ver glad that I did as I have received very positive feed back.

Thanks Annie

Rach