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

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!

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

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

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?!

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

Hi Rach! I know EXACTLY what you are dealing with! Sadly, it took waaaaay too long and I was admitted to the ICU for 8 days - 8 days!mad:
I saw every specialist and was blown off - when I looked in my rear view mirror my eyes were wonky - just like you described. I was terrified! Do you have terrible headaches as well? Your eyes are literally "rolling" around in your head. People tell me now that they noticed it, so why didn't they SAY anything? My speech became so slurred that no one understood what I was saying. It got to the point that chewing an ICE cube was too much.
The ice thing you described is exactly what my neuro did to test my eyes. Now when they are weak I use an ice bag.
I am so sorry that you are going through this. It just isn't right. I know that you are frustrated and scared, but you need to be your best advocate and keep plugging away. That was the only was I was finally dx'ed.
Once you ARE dx'ed and on meds you will feel so much better! MG waxes and wanes, but if you are having trouble breathing dial 911. Or have a back up plan where you can call someone and just push a button - that way they know you are having a crisis and need help IMMEDIATELY!

I am not a dr! But it does sound like "classic" MG symptoms.....

I hope you feel better soon! You need MEDICAL help NOW!

You will be in my thoughts and prayers!

If you need to vent, pm me ANYTIME!

Big hugs!
Erin

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