Does this sound familiar?
 

Hi
Im new to the forum so I apologise if I cover old ground.
I will give you a brief run down of things so far....
In January 2007 I had ptosis of the right eye and a lot of fatigue. This was initially diagnosed as Bells Palsy.
As 2007 went on I noticed that my legs would shake with fatigue after 10-15mins of walking. My arms became so weak I struggled to blow dry my hair.
In August 2007 my mother came across a website that suggested placing ice on the area of weakness. As she lives an hour away from me she told me to put some ice on my eye and to ring her back if anything happened. Well did I get a shock for the first time in 8 months my eye opened. We found that this could be used as a diagnostic tool for MG. We went to my GP- took some ice and the GP gave me neostigimine bromide. I took 15mg and my eye opened 20mins later.
In October 2007 my hospital consultant diagnosed MG. I was put on mestinon 30mg 4 times a day. I had blood tests for all anti bodies and was negative. Had CT scan no Thyoma.
June 2008 hospitalised for breathing difficulties, so weak I could no longer walk.
October 2008 sent to Oxford- basically told by one dr I was depressed! 3 other Drs said I had a myasthenic syndrome. I had all the blood tests again and another SFEMG all negative. Yet Mestinon was controlling symptoms. Told to come off steroids.

Since January 2009 I have been admitted to the ER 4 times with breathing difficulties where oxygen levels fell below 88%. I now have double vision, blocked vision, ghosting, weakness and an elephant has parked itself on my chest. But apparently I dont have MG- although my symptoms are better when taking mestinon and detriorate when I dont!

Just recently I saw a breathing specialist and had to wear a pulse ox for 24 hrs. My oxygen levels on moving around were so low the dr said I was holding my breath! I must be pretty talented to hold my breath for two hours. I had spirometry done those came back normal- but your sat down for those. I now have to do a treadmill test- which will be fun when I struggle to walk somedays.

Anyway the Drs still dont think I have MG- but they dont know what else it is as Im negative for everything else. I have even had 4 MRIs and a lumbar puncture.

Im currently on Lamotrigine and Mestinon. I do sleep better on the lamotrigine, but its making my hair fall out!

Any words of encouragement of advice would be massively helpful. Sorry to drone on!

Kind Regards

Rach:D

have no wisdom to impart as i'm relatively new to mg alsoand don't know how things work in the uk[it sounds like that is where you live] but in us if you ahve access to major teaching hosp/university i think the treatment is betterin that you have quick access to procedures,specialists etc. good luck and hope you have some resolution to health problems!! soon!:Wave-Hello:

Hi Rach,
Gosh - you've really been put through it! Crazy how they can give and take away diagnoses! I can't really be of too much help but wanted to let you know you aren't alone. I can SO empathise about the elephant being parked on your chest (great expression by the way) and the annoyance at your limitations. Everything sounds like MG to me, but what do I know.... when I was diagnosed my neuro said my symptoms were so mild I'd only ever need mestinon - a year later and I couldn't brush my hair or dress myself. Hope you are okay and keep your spirits up!
~Kathy

Does this sound familiar
 

Hi,

Thanks to you both for your replies.

Im in the Uk as you guessed. Oxford John Radcliffe is supposed to be the centre of excellence! This is where I was told I was depressed and needed CBT (cognitive behavioural therapy) to help me open my eye!

When I see a Dr that doesn't know me I no longer say that I have MG as they look at the notes from Oxford that say Im depressed and Im classed as a nutter, I just say now that I have a neurological disorder.

Im being treated with anti convulsants - Lamotrigine. In the hope that it calms down the electrical activity in my brain. However after 8 weeks on it and only 4 good days Im having doubts. Plus my hair is falling out.

I feel my consultant still thinks I have MG but feels he can't go against the centre of excellence. As he hasn't stopped me taking the mestinon, which I now take 120mg 6 times a day. (Along with all the side effects as I dont tolerate them well....would I really continue to take a medication that means I mess myself on occasions unless it did some good?)

He has finally admitted I am better on steriods, as I had no hospital admissions on them. Im just as you can imagine terribly frustrated. He was so sure before I went to Oxford that it was MG.

When I try and express my frustration I get tearful. I haven't worked in over a year and Im worse now than I ever was and no one in the medical profession seems to care. I was medically retired from my job at 35. I have told my consultant before "its ok for you, at the end of this meeting you walk away from this illness, I live with it 24-7". I dont know what more Im supposed to do?

If I go to another consultant I go with the medical notes that say I have ME ( I dont , I have a relative with it. I dont have the symptoms- no swollen lymph nodes etc the relative has had the condition 18 years so I know the signs and symptoms pretty well) or depression or heaven forbid conversion syndrome. (mentally I have never felt better and haven't been taking anti depressants since July 2008). I get days when I feel down but I think you would have to be a robot not to in this situation.

I just feel that Im going to go on for years not knowing whats wrong......although all the symptoms I have point to MG.Along with Ptosis that fluctuates, I have problems with my voice sounds gravelly, or like I have a cold or nothing comes out at all. I choke on my own saliva, food and drink. I struggle to get out of my chair, roll over unassisted in bed, climb stairs, walk. Anything really that is physical. So its not like this isn't affecting me!

Also has anyone noticed with their ptosis, if they can see their pupil does it roll out or in towards the nose? Mine moves out towards my ear. This makes my vision awful. I can see how people can fake ptosis but how do I fake a pupil drift when your eyes work together?

Sorry I have done it again....droned on. Sorry all the toys are out of the pram now!!

Thanks again
Rach:eek:

sorry I also meant to mention in my myriad of symptoms slurred speech. I sound so drunk people have put the phone down on me accusing me of being Brahms and list!

Hi Rach,

Welcome to the group! I am sorry to hear all you've been through and still no confirmed diagnosis. It does sound like MG, especially due to the fact Mestinon helps your symptoms. There are so many doctors that just don't like to make an MG diagnosis when the labs come back neg, but I believe that way of thinking is starting to change. I hope you will find a good neuro that will figure it out one way or the other so you can start feeling better. Good luck with the stress test and let us know how you make out. Sorry I couldn't be of more help. Hang in there, we're all pulling for you!;)

Take care,
Pat

Hi, Rach. It sounds like neurologist in the UK are even worse than they are here. Did they really think you O2 stats dropped due to stress?! :eek:

Who did you see over there? Here is Dr. Angela Vincent's information and email. Why don't you email her and ask if she can run your Acetylcholine antibodies (binding, blocking and modulating) and the MuSk antibody test? Then maybe she can refer you to a neurologist who isn't such a jerk.

http://www.imm.ox.ac.uk/pages/resear...es/vincent.htm

Oxygen stats don't just drop like that for no reason. Did the "breathing specialist" do what is called MIP (maxiumum inspiratory pressure) and MEP (maximum expiratory pressure)? Those specifically measure neuromuscular weakness that causes breathing problems. That's what they SHOULD be doing.

Everything you describe sounds like a neuromuscular disease. Maybe it's not MG but it doesn't sound like they have ruled it out - or anything else really. Did they do a creatinine phosphokinase test to rule out polymyosits?

Do you have neuro-ophthalmologists over there? They can do certain tests to see if your ptosis (droopy eyelids) are fatigable. Fatigable weakness is the hallmark of MG. MG gets worse upon exertion/repetitive activity and better with rest.

Dr. Vincent understands that not all people with MG have antibodies. And if you are on Mestinon or steroids when they do those tests, they can turn up negative. You should NOT withdraw from any meds without the doctor saying it's okay though. You could go into a breathing crisis just from doing that.

I hope you can get some help. This is crazy the way doctors treat patients who "might" have MG. This kind of sexism where they say women are depressed instead of having a real disease makes me want to scream. Why don't they just give all of us women antidepressants from birth?!!!

Take it easy out there in the summer heat. If you have MG, it will make it much worse.

Annie

I can relate!
 

Electronic Medical Records Are Evil
 

Geez Rach, your story is like a horror movie. I probably feel that way because it's kind of my story too and reading yours gives me that same silent-screaming-no-one-can-hear-me kind of feeling.

You have a worse twist though because, if I understand correctly, your medical records are all electronic. Here in the US, the only thing that has saved me is when I doctor says I'm nuts or blows me off or gives his/her opinion when I don't have confidence in their knowledge I can walk away and start again. Nothing haunts me. It's only a matter of time before we get medical records here and I think people in the US don't realize what a horror that's going to be and how much power that's going to give doctors who are often wrong and often don't care. Is there any way for you to opt out? There is no way in heck I'm going to allow my records to be put into an electronic database.

Have you been to the MG Assocation forum? It's based in the UK and I know they could hook you up with someone near you who you could talk to and who could help you. Here's the link:


http://www.mga.superbuilder.net/mgaforum.html

I think Annie's idea is brilliant. If you could get in to see Angela Vincent you'd be seeing the best in the world. She developed the tests and she's looking for other antibody tests right now.

Good luck!!!! Don't give up! I know you must feel like you're going crazy and at the same time that you're sure you're not (you're not!) and no one will listen to you. I just want you to know that I've been there, and lots of other people on this forum have been there. Actually, I'm there now.

Don't give up!!!!!

Ally

Hi,

Thanks for your replies. You guys say it sounds like a horror story, yep it is and I haven't even told you half of it! Like being given the answers to an eye exam as I couldnt read the board due to double vision.

Yes the records here are electronic so whatever the esteemed medics see fit to put in your records are carried with you for life. So now Im a fruit loop hypercondriac! That can hold her breath for so long I can decrease my Oxygen sats levels to 50% and set the pulse ox alarm off. You have to laugh as you just cant make it up.

Today I have woken up and can barely walk. Now most normal people when this happens would ring 999 or 911. Me however, when I tell my GP when he returns my call, he wont do anything.Apparently its acceptable for me to not be able to walk. If he suggests hospital theres no point as nothing will be done until Tuesday when my consultant is in next.

Plus I dont know if you are aware in the UK no one is allowed to get sick on a friday or weekends. Friday is turfing out day to make the wards easier to manage over the weekend as there will only be one dr for over 200 patients and a small amount of nursing staff. The Dr will also be a student with no knowledge of MG and will rely on pulse ox info for oxygen saturation instead of arterial blood gasses and spirometry. I know this as I have been unfortunate enough to spend the weekend in the place! The ER /A&E dept is good....until they read your notes.

Thanks for the suggestion of the MGA. Im sorry to say I find them pretty poor in comparison to this site. When I have had a rant of the forum, I have been told that if Oxford say you haven't got MG then you havent got it and they wouldn't say you were depressed if you weren't. Unfortunately the MGA is very pro doctors and if you say anything negative about them, you get a tirade of pro medical comments.Whats more irritating is when you read these peoples stories they themselves have been treated poorly, they seem to think that this is acceptable though. (I do have a low tolerance threshold for the medical profession due to the way they treated a relative of mine who had M.E. She suffered with fits due to the illness, she had such a bad fit one day that she fell and was left on the floor by the caring nursing profession as her illness was all in her mind and she would get up when she got bored. How vulnerable you are when you fall sick. I dont doubt that there are some wonderful staff out there. There is one on the ward that I end up on at the local hospital, who believes that I have MG and knows that Im sick. ) What these people (mg forum on MGA) seem to fail to realise is that I saw a specialist in MS at the MG centre of excellence! They also were not a specialist in mental health, therefore unqualified to diagnose depression from a 6 minute consultation where they even failed to take an accurate medical history.

I see a neuro-opthamologist, my droopy eye is fatiguable and I can not sustain an upward gaze in either eye without my eye lid closing. Its a great party trick but it left me with both eyes shut for two hours! Not very smart.

Erin, yes I do get headaches when my ptosis is prolonged, like at present, my eye has been shut for 13 days, my forehead feels like its being ripped in half as my left frontalis muscle is over compensating and making my eyebrow arch in surprise constantly. I also get pains in my eyes like eye strain.

Do Drs in the USA or elsewhere insist that MG has to be bilateral when it comes to Ptosis? I came up against this in Oxford and local hospitals. Mind you in Oxford they told me prednisolone wont stop your periods yet the patient information leaflet clearly states it can stop your periods. What did I say earlier about not being able to make this stuff up!

Im loath to contact Angela Vincent due to her connections to Oxford. I will have a really good think about it.

Thanks again for all your support and suggestions, I really really really appreciate it. Sorry if I come across as a miserable so and so but Ive had enough!

Cheers and have a good weekend,

Rach

Welcome Rach ! Don't feel alone , with all you are going with, I also went through the frustration trying to get a diagnosis, & given drugs that made worse. Then I was diagnosed with the Mg With overlaps. They got me on the right meds, & explained,that the confusion with my diagnosis is I have another major illness, that they are still working on to diagnose. It is sad that they have to wait till so much damage is done, before they can put things together for a diagnosis.
I am sorry you are having to go through this, I am glad to meet you !
Mary

Rach, sorry to hear that about the mga and Oxford. I guess it's bad everywhere. At least here on this forum no one's going to tell you you're crazy or depressed. I just want you to know that most of us have been told we're crazy, go see a psychiatrist, go on antidepressents. It's really insulting but also, the world's biggest cop out. Can you imagine if your boss came to you and said, "here, fix this problem" and you say back, "eh, doesn't look like a problem to me, therefore I don't have to do anything and by the way, you must have a lot of personal issues, you're probably crazy. Okay, I want my paycheck now." It seems like the medical profession is the only profession where you can smirk and shrug your shoulders and insult your clients and make no effort to help them and still get paid a fortune. People are going to catch on eventually and I think the internet-educated are going to be the spark that lights that fire.

In the meantime keep telling yourself that you know what you know and you are not crazy. Keep trying to figure out ways to work the system to your advantage. Maybe you could complain that you were diagnosed by an MS specialist. That's not right. Can you appeal the medical records? When I went to my gp when this all first happened she insisted that I was depressed so I went to a psychiatrist and had her write a letter back that I wasn't depressed and now that's in my records which is good. Then another gp insisted that I had fibromylagia despite the fact that I don't have the symptoms (waste basket diagnosis in this case) so I went to a rheumatologist and had him write a letter back that I don't have fibromyalgia. Use their lack of psychological knowledge against them. If they say you are nuts, make them prove it - it will backfire on them. You can do this with a wide-eyed innocence that won't make them angry after all you just want to follow up on the wise advice, right? And then you can at least have the differing opinion on your record. It might be worth writing to Angela Vincent and see if you get a response. She may have heard hundreds of stories like yours and be sympathetic.

Good luck, keep trying!!

Rach, I emailed Dr. Vincent years ago about the MuSk test. My doctors office sent her my blood directly. I found her to be VERY nice, responsive and professional.

I accidentally found myself in the middle of a group of neurologists who were completely unprofessional to say the least and I was blacklisted by them. I know how it feels. But sometimes you have to work around them and find people like Dr. Vincent who are quite wonderful.

I don't think you have anything to lose at this point. You are NOT doing well at all and I am frankly concerned that you could go into a crisis, even on a Friday, and die because these idiots won't see what is right in front of them. NORMAL people, HEALTHY people just don't have their O2 stats drop like that. And you can't hold your breath to make that happen! ;)

I'm sorry you have been treated so badly. These kind of situations make my blood boil.

Annie

Hi,

Thanks again everyone for your kind responses. I will be completely honest and say I have been in the depths of despair today and your posts have lifted me greatly.

I have decided that I will contact Professor Vincent, however I need a few days to put together a decent email so I dont come across as hysterical!

I have had bloods done before, at Oxfors and other labs, the ach one and musk. All came back negative, as did RNS and SFEMG. However I did read a paper from Oxford that tested 44 patients with seropositive MG. Guess how many had a positive SFEMG? 11. Yes thats right 11. So how can that test be so accurate? If the tests for Myasthenia were so accurate why are they looking for new ones? No Dr has ever had a reply for that one.

Its awful, but Im glad Im not alone. My memory is pants but I want to say thanks for the post about Drs being the only profession that are rude to their clients and get paid for it.

I have found more support here in a day than I have in two years on another site. Thanks for your ideas and suggestions. Thank you also for sharing your personal experiences with a total stranger.

My mum visits this site and I know she has found your comments reassuring, especially when I was crying down the phone this afternoon due to sheer frustration!

The only way I can describe how I feel is that its like being in a glass bubble. People can see me but they don't hear me. Im hammering away on the glass but they dont want to know.

I think it was Annies post which expressed it, along the lines of they will kill you. Thats exactly how I feel. How ill do I need to get before someone takes some notice. I do worry that one day due to their ignorance I will die due to the mistakes they are making.

Its not acceptable to treat another human being in this way. Especially when your code of ethics state first do no harm.

Thank you, thank you, thank you,

Rach x:grouphug:

Hi Rach!
 

rach73-just thinking of you-hope you had a good day!! remember this is only one rotten year out of however many you ahve lived and hopefully you have many more to come!! my advice for for helping to get through rough times is to go out-even if you sit on the front steps 5 times a day for 10 mins!!! try to distract yourself however you find pleasure. if you need medicine /counseling try to get it and don't wonder what anybody else thinks!! they are not living your life- make it a good as you can however you can!! end of my mother sermon as my kids would say! but really i hope things are better for you-remember all of us are here for you!!:You-Rock:

Hi

May I say yet again Thank you.

I always try and do something that cheers me up. I get really miserable when I can't get out the house. Today I went out for a shuffle with the dogs. The path I walked would have taken a normal person around 4 mins. It took me twenty! But hey the dogs loved it. I had to walk with 2 sticks and its wiped me for the rest of the day but it was lovely watching the sun rise and hear the cuckoo calling.

So after the last two days I feel positively turbo charged! But I think two days in bed always seem to give me a little bit more.

Thanks once again.

Im now preparing some notes for my hospital visit. Im going to see if we can get a little empathy! Im going ask if he was ill would he accept the wait and see approach!

I will update you and let you know how I get on.

Rach:hug:

Hi Rach!
 

Hey Rach!
 

Hihi Rach,

so sorry to hear about what you are going through. I was just as frustrated as you are when i simply couldn't get a diagnosis, even though i practically couldn't walk. my limbs would tremble too, and some of your symptoms are what i am feeling too, love the bit on having an elephant on your chest!

a note about emg though, i just redid my emg at another hospital and they've found some abnormalities in my emg, though the first hospital i did it at couldn't find anything wrong. Its just a mth difference between the two tests so i myself am flabbergasted.

Initially i was diagnosed as having conversion disorder and referred to a psychiatrist as well as a psychologists, nad amazingly i managed to convince both i didnt have conversion disorder, and got them to write a letter that my symptoms weren't due to mood or stress symptoms. that letter helped me in getting that diagnosis revoked, as in singapore, our medical records are shared between hospitals too. =) I too thought i was going crazy, but it was more due to the symptoms rather than any existing mental or mood stress that i had, and the psychologist and psychiatrist both agreed.

Mg's quite rare in Singapore where I was, so now am overseas trying to get a proper diagnosis. I agree with Annie, even if its not MG, it could be another muscle disease or other health issues which need medical help! Do not give up on yourself, the symptoms u are experiencing can't be due to you wanting to feel them. Its crazy for them to even suggest that.

Welcome to this great forum, you'll love it here! Feel free to come here and rant, cos the people here are simply great!

Hang on and cheer up my friend! Have a great week ahead!

:hug:

Hi,
sorry for the slow response but I have been in hospital since Monday and have just got out today.

I had a Tensillon Test there, now despite the fact my ptosis resolved and I could start to talk again, this only lasted a minute and apparently this is not a positive result. I would like your thoughts.

I also did an ice pack test and my ptosis resolved but again for around a minute. Again I have been told it was not a positive result.

This morning in hospital I couldn't see my left eye lid would hardly move and when it did open my eye ball was jerking all over the place. I was very weak etc.

My consultant has stated I dont have MG but Cortical Plasticity from a virus he reckons that gave me the Ptosis in Januray 2007.

To say Im distressed is an understatement. Luckily we used my phone to video the tests. Once I have figured out how to download those onto the computer I will be emailing them to Prof. Vincent for a second opinion.

I went into hospital on monday as my lower face drooped, I looked like a sad clown and I couldnt talk. Basically they have left me lying in a hospital bed for 5 days.

When I was told this morning about the cortical plasticity I lost it. I am at the end of what has been a rather long tether. They were going to discharge me when I calmed down, as in the heat of the moment I said currently I have no life so I might as well not continue living. If they gave me a hundred paracetamol I would take them and not bother them again. I am very angry and just to reassure you I wont be doing that. I just dont know what to do. I discharged myself and got my mum to take me home. Im home barely able to walk and they say theres nothing they can do to help me.

So there, thats my week!

Rach

Oh Rach,
I am so sorry for everything you are going thru., I wish there was something I could say or do to help., I know you are a fighter., so please keep fighting, I know when it comes to Doctors it is hard to find a good one., I know I am waiting to August to get into one that specializes in MG, I had one neuro who was making me crazy with the side effects from meds were worse than my symptoms., so my GP is taking care of me till I go in August. But I am one of the very fortunate ones., My double vision is back with a vengence and i am fatigued easily but I consider myself very lucky when I read your post and others., please take care., and keep fighting, things will turn around., we are all behind you and think of you often.
Nancy:hug:

Hey Rach!
 

I keep reading about the "ice test" in different threads, and as I'm sitting in my cool little unit(thats cool as in cold not as in :cool: "Cool" :rolleyes:) I'm wondering how an ice test can improve, (even if only for a little while) your mg, while a cold house sends my fingers into "Nuh, I ain't going to work for you today" mode:confused: I know I know its just one of the wonders of mg, but still intruiging:D, or is that just me........

Hi Rach,

I am so sorry for all you have had to go through and still no answers.:( I don't understand why the tensillon & ice tests were not enough. It was a great idea to record them. I truly believe you will get some results after you email Dr. Vincent. You are a very strong person, so hang in there. Just know we are all pulling for you and are always here for you.;) Take care.

Hugs,
Pat

Hi,

Yet again I start a post with thank you.

Im feeling better today although my vision is a bit blurry and for some reason after 3 weeks my eye is open.

I still dont know what Im doing but its early days. I dont want to react before I have had time to calm down and sort my head out.

Is there anyone out there who knows about a tensilon test - what is the specified time that symptoms are supposed to be relieved? Before its classed as a positive result, any ideas.

I think as they saw me so bad in the hospital, they know how ill I can be.

As I said my head is whirling I dont know which way is up.

Thanks again

Love to all

Rach x

Everything You Feel Is Understandable
 

Hey Rach,

Don't feel bad about what you said. Personally, I think it's a natural response to say that life isn't worth living at times when life for us can be very, very difficult. They say that it's all the little mundane things that make life beautiful - a walk in the forest, a trip with the kids to the farmer's market, a giggle with a close friend over coffee. And a good portion of the time we're denied all those wonderful moments. We're stuck in bed or on the couch staring at the same four walls with the same tape running through our heads: why doesn't anybody believe me, what will happen to me, how will I make a living, this isn't what was supposed to happen, when will this end.

It takes enormous courage to get through what you are going through. It's awful enough having a chronic disease that is diagnosed and treated. Being in the bubble screaming with nobody listening is it's own kind of hell. Really, somebody needs to write a book, start an organization, start a forum for people like us who are just trying to find a diagnosis and need some kind of road map.

But you're still fighting the good fight and that's a wonderful sign. Think of all the people who must have given up who nobody hears from. Ouch. But you're in there, you're still seeking answers, standing up and saying what you need to say to your doctors. I think taking a video of your symptoms was genius! You know we have all these new ways of making ourselves heard and believed and understood - videos, the internet, printing out photo sheets. It takes some creativity to see how to use these tools and you're doing it. You're working it, baby!:D

Just keep telling yourself that you know you are sick. Period. Nobody knows how you feel except you and it's the height of absurdity, in my opinion for one human being to tell another that they know better how the other feels. Not possible! And we'd have to be drooling idiots to mistake a mental problem for a physical problem. Geez! Give me a break. I have a degree in psychology and I can tell you all that crap about women imagining illness came from a time when doctors thought all women were hysterical. And then Freud did a lot of harm to women with that nonsense and it's still causing us harm. As another example, lots of women came to him with stories of sexual abuse and he decided that they were all nuts, hysterical nuts. Well, he was wrong. It cracks me up that these know-it-all neurologists are still carting out these victorian ideas. Ya, maybe you need to be chaperoned everywhere you go too. And put that corset back on. And education will ruin a girl (probably that's why you're nuts :) ). And don't even think about voting. Puh-lease. :p

By the way, I looked up the ice and tensilon tests in a book I have on mg and it just said that a resolution of the ptosis was considered positive. There was no mention anywhere of length of time. Maybe you can find some articles that talk about that.


Hang in there, Rach. You're going to be knocked down again. And probably again. Just keep getting up, that's the key.

Ally

A tensilon test consists of an injection made under medical care, it relieves almost immediately the MG symptoms during of few minutes if positive.
It is done under medical care because sometimes an adverse reaction needs immediate attention (another injection).
Maurice.

Wow Do You Sound Like ME!!!!!! In all seriousness your experiences sound so much like my own its not even funny. All I can say is hang in there. After having issues for five years I finally got a positive antibody test!!! I did have an enlarged thymus(had thymectomy recently) and had the tinselon test, with a positive result. SFEMG, muscle biopsy, RNS, all antibody tests were negative for 5 years.

I had many a doctor say I was depressed or that I had pain conversion disorder. You can bet they all feel pretty sheepish now. I was dxed with fibromyalgia and as soon as I said I was dxed with that it was all over. They immediatly thought I was nuts too. So I stopped mentioning that. But now that I have a positive test they treat me totally different, which is nice but makes me mad they did not treat me this way before. I think the advice others gave you is excellent. You have to find the right doctor. It took me two years with my current neuro, so even when you find the right one it takes time. Unless you get lucky and get that one positive test result. Thats what I really hope you get soon. This is the perfect place to come and vent, ask advice and questions. So Welcome, and come back and keep sharing. Hope you feel better soon and I would keep taking that mestinon.

Rach, It sounds to me like these doctors are full of it. Cognitive plasticity?! Is that the best BS they could come up with? Just look up plasticity. Having good cognitive plasticity is a great goal but it's not a disease. The more "plastic" your brain is, the better off you are.

If you had obvious symptoms like ptosis that improved during the Tensilon test, then that is a positive test. My neuro tested my muscles before, during and after the test to see if they were weak, then improved, then weak again; which they were.

Do you have to be on death's door before you get help in the UK? It sounds like you are close anyway. I'm really worried about the damage those low O2 stats are doing to your body, especially when you're sleeping. What kind of "excuse" besides holding your breath can they give you?! You can't hold your breath while you are sleeping, so why don't they do an overnight oximetry study on you?

I'm sorry you are going through all this. It is horrid. I can't believe there aren't higher standards for medicine over there.

Annie

Myasthenic Syndrome - CMS
 

Hi Rach,
I'm sorry I haven't been around until now. I noticed you said 3 doctors mentioned myasthenic syndrome. There is a form of Myasthenia with this name that does the same things to you, but not because of autoimmune problems - it's hereditary - called Congenital Myasthenic Syndrome. Here is a link:

http://en.wikipedia.org/wiki/Congeni...henic_syndrome

Your parents don't have to have shown serious symptoms, you can inherit it because of one parent having a recessive gene. It may be what they were talking about, and since a form responds to acetylcholine but not other MG treatments, it may be worth checking out. Also, it's possible to have had very mild unnoticable symptoms as a child, which get worse later in life.

Best of luck to you. I sure hope you get help soon.

P.S. My positive Tensilon test lasted very few (long time ago, can't exactly remember) minutes as well - I was able to stand out of a chair without using my hands and walk a little bit. I'm sorry you are dealing with such seeming ignorance! Since you have i-net access, try googling some of these things and printing them out. That way, you can put the information in their face when necessary. Just make sure you are printing from a reputable site, like Mayo, Johns Hopkins, or Wikipedia. If it's printed from a forum, you're asking for even more scorn!

[FONT="Comic Sans MS"]((((Oh Rach))))).......((((hugs..:hug:..)))) 5 good slaps with a wet fish for the docs....and...Oh horse-droppings, that's what it sounds like to me. You sound like the classic MG patient.

Do they think you have nothing better to do, than spend a bunch of money to keep going to doctors for relief of these symptoms for your own entertainment?

I don't have anything to add, as it seems like everyone else covered all that I was thinking. You need a doctor who understands and is willing to treat a sero-negative patient.
What good are they, if they aren't going to do their job, and take care of you? makes me so mad!

So sorry you had to go through this, truly sorry.
Much Love
Lizzie [/FONT

Hi everyone,

Your words of encouragement have meant so much. My mum reads this daily and she told me to have a look on line to see what people are saying!

As you can imagine I have been pretty down over the last few days.

I stopped taking the Mestinon Friday, as I believed that it wasn't making any difference. A friend of mine who is very sick with MG, warned me I would come down with a crash. Today it happened, I was shuffling to walk, my arms ached with fatigue and the ptosis that I have suffered from continuously for the last 4 weeks hasn't abated.( ptosis I have suffered with since 2007) By 2pm today I was desperate, so I took 60mg of mestinon and crawled back to bed. Guess what an hour later the ptosis has resolved and I can function. By function I mean walk without the "sexy" shuffle and move my arms properly.

Having :mad: had a long series of chats with my husband and my mum, we as someone else already has here have scoffed at cortical plasticity. As soon as I can work out how to download the video from my phone I will be sending the info to Angela Vincent. However I am scared as coming across as the hysterical female who is clinging to a diagnosis. Its a very tricky place to be.

My consultant is a nice man and Im sure very caring. However he is doing nothing to get me better and has now written me off with the waste paper basket diagnosis of cortical plasticity. An expectation of that I will be well in five years is unacceptable.

Thank you everyone for responding to my posts, Im so glad to have found this site and feel Im actually being listened to! Its ashame none of you are consultants!!!

Oh on another note I was examined by 4 medical students whilst in hospital last week. On clinical signs they all diagnosed MG. The same happened with 13 students I saw last year. Guess their minds arent closed yet! That obviously happens when they graduate!!!!!!

Love to all
Rach x

Hi Rach,

I am at a complete loss for words...printable ones anyway.:rolleyes: I truly believe you will finally get some answers when you get in touch with Angela. In the meantime kiddo, stay strong as you have been and keep that great attitude. I am so glad you have your Mom and husband for support. I will keep you in my thoughts & prayers. We are always here for you.;) Take care and keep us posted.

Hugs,
Pat

Hi Rach:

I am new to the forum and have been following your story. I'd like to tell you about myself in hopes that it will help you continue in your resolve and purpose. Sorry for the long email, in advance.

You are not alone in the journey you are on trying to get an official diagnosis. I have some of the same issues as you as far as test results. I was diagnosed in 2005 by 2 different neurologists based solely on clinical symptoms. I went to a neurologist in Atlanta, Ga, who told me my symptoms were so strong that he didn't think we needed to spend the money for the testing other than blood work. My blood work is sero-negative, by the way. He gave me Mestinon and said that if it worked, then I definitely had myasthenia gravis. It was amazing how much it helped me even the first day.

I then decided to see a neurologist in my hometown in Tennessee as I didn't want to continue to make a long drive to Atlanta. My new doctor also said I definitely have MG and did no further testing. I started out on Mestinon and Prednisone but had to go off Presnisone (blood pressure, weight gain). My doctor started me on IVIG's and wanted me to take CellCept. My family doctor wasn't too sure about the CellCept and thought it would be a good idea for me to go to Duke University to the MG clinic there and see an "expert" which I did.

That was the most traumatizing doctor visit I've ever had in my life. I saw a well-known research doctor who, upon clinical exam, confirmed an MG diagnosis and said we would do the EMG testing since I had never had it done and am sero-negative. He also tested for the MUsK antibody which was also negative. The EMG tests were negative. He kept doing them repeatedly and kept re-checking my clinical signs. This went on most of the day. I felt like I was in shock when my husband and I left there. After the tests, he wouldn't say what he thought but asked me if I would be willing to come back in 3 months. I said I would, but knew I wouldn't. He really frightened me. He did tell me, though, that the first thing he would do is have me go on CellCept - which is the information I was looking for. :)

When I got home, I confessed to my neurologist that I had gone there for a second opinion. I hadn't wanted him to think I didn't have confidence in him. Anyway, he thought the whole thing was pretty much ridiculous (my paraphrase). He said that the EMG test would not be true because I was on Mestinon and had just had my IVIG treatment a few days before. The whole experience DID make me doubt myself, though, and whether I really had MG or something else. I was constantly questionning my doctor about it for a couple of years. I don't do that anymore - my symptoms and response to specific MG treatments is all I need to know. What did hurt me, though, is my self-doubt which caused me to try to ignore MG and push myself way too much and now I am on short-term disability which may turn into long-term disability.

Hang in there and stay true to yourself in spite of any and all "professionals." In time, it will work out. Don't stop taking your Mestinon! All you need to know is that it helps!

With love,

I'm sitting here with tears in my eyes, I'm glad to see that doctors are the same the world over. Its sooooo frustrating that drs can make us feel so inadequate, when we live with our bodies daily and they see us once every few months(well in my case 1 in 3 months) I actually stood up to my neuro, and was emphatic about what was wrong with me after seeing him for more than 3 years, this seemed to make our relationship much better. He still insists on saying "oh you are doing well" and I think, Hey come and live with me for a week and see how I'm doing in the real world!!!!!!!!!!!!!!!!!!!

I'm sorry you are going have gone through these things with drs, I still think a dr before he graduates should have to spend a while in hospital being treated for something to see just what we go through, it may help them be a little more compasionate
Kate

i also think we tend to either exagerrate or downplay our illnesses. i have had a long term gi for 20 something yrs. i always say"fine,ok" when asked about it even to drs and nurses when in hosp. that's how i deal with it -learn about it, control it as best i can and ignore it the best i can. it has given my doc many laughs when he touches my abdomen and i get tears in my eyes but i said fine 2 mins earlier! i had to find another dr yrs ago for gi problem[i worked in hosp] because he had trouble believing that i needed so much pain med when i could stand,talk and say fine at work[i wasn't really fine but i like to play pertend] also i think your mind aids in healing -positive thinking can contribute to feeling better . i hope everybody has as great a day as possible today-do something positive for yourself!!:I-Agree:

Hi all,

just to make you laugh, thought I would go about down loading the special video evidence from my phone. You know what I cant find the bl***y cable. Luckily I was feeling quite good today so I could tear the house apart looking for it! We now look like we have been burgled and I still cant find it!

Im now too tired to put it all back......

oops!

Love
Rach x:D

Hi Rach,

Glad to hear you were feeling pretty good today!:) You'll probably find it where you least expect it to be. Hope you have another good day tomorrow.;) Take care.

Hugs,
Pat

Hi all,

I just thought I would give you an update on whats happening.

Mood wise Im very up and down. This has been due to the fact that my very caring neurologist isnt seeing me until the end of August. I also had a call from my gp's surgery to say that he wanted me to go in and see him, they demanded I made an appointment there and then. I told them I couldn't as I needed to know my husbands schedule, as I couldn't get to the surgery alone. This was scoffed at. Silly me obviously as the Drs secretary you have a degree in medicine, I apologise for my ignorance!

My GP is basically going to sit there and crow because since the disasterous visit to Oxford he believes that alot of my illness is phsycological. Thank you Oxford.

Today I have managed to down load the video onto my pc and then onto a disc and I will be sending it to the Weatherall Institute of Molecular Medicine, where Angela Vincent does her research.

Im asking for some advice here, I know I need to remain neutral in my covering letter. Should I give her a history of my symptoms ? Should I include my neurologists name and address along with my GP's? What do you all think?

Also does anyone else suffer with extreme self doubt when it comes to their illness? As you know I did the heel walking test last night, then today I question its results by telling myself I knew what the outcome would be so I put it on. I know this is crazy talk, but I dont believe myself sometimes....does anyone else have this?

Im taking the mestinon when my eye is closed and it opens after an hour. Im also taking it when I have bad muscle weakness. I have to take propantheline with it as I suffer really badly with side effects, horrific stomach aches which remind me of when I had bowel adhesions. I also get the runs, sorry I can't spell the D word!

I look forward to your responses and Im looking forward to a brighter future.
:D

Rach

Hi Rach,
First, I have learned that if you get the information to the docs in the shortest form possible, the better. They don't want to take the time to review more that just the facts. I would list your history of symptoms, medication and response to the medication (including how long before it helps), and any tests you've had done so far. You are going for an objective review here, as I understand it, so state just the facts.

Secondly, I know exactly what you are feeling about the self doubt. There have been times I have said out loud "walk right" just to see if it would make any difference. I test my "abilities", or lack of, a lot when I'm having trouble.

I think it's sometimes a denial thing, and other times it is purely wondering if I'm really manufacturing this in my mind - though I've come to KNOW that's not the case. When the docs treat you as we have been treated (you especially), it does that to you.

When the doubts creep in, I remind myself that when this first hit me everything in my life was wonderful and the symptoms that showed were things I could never have dreamed up. Shoot, I had never heard of MG until my preliminary dx and had to ask a nurse which was worse - MS or MG!

When I am feeling good, like now, I can't even imitate my walk from when I am bad. I've tried when trying to explain just how bad it gets! I just can't do it the same.

Having had to research gobs of different neuro conditions, I have come to know that there are so many different conditions that can cause the same types of symptoms, including the weakness issues. Your response to the Mestinon is a very strong sign for MG of some form though.

Try to take care of yourself as best you can, maintain your diligence at getting a dx, and keep your postitive attitude. I'm confident you will have better days ahead!

Becky