Andreafm 23 post s 8-Nov-2007 9:49 PM	Please Help I am terribly ill. I have been ill for over 12 years with muscle weakness and things have drastically gone down hill in the last year. I was dignosed with MG Occular in August by EMG Test and they have been unable to find the MG in my arms etc. Also the basic antibody test was negative. My consultants at Guys Hospital have now decided that I have got Chronic Fatigue Syndrome with OMG!!!!????? The mestinon worked on the muscles and the vision but I couldn't tolerate [even a very low dose]as it made me so hyperactive that I couldn't sleep at all and was hyperventalating and crashing. I have been left without any treatment. I am so ill that I am barely unable to get out of bed and feel naseous all of the time. I have lost 2 stone in 6-8 weeks. I am restless and my facial muscles are very weak with swallowing and breathing problems. But my arms, legs and torso are the worst. I have spoken to the doctors re: the possability of LEMs as it manifested in that way. But this has been rejected without testing.....saying "oh you haven't got that it's too rare". They won't even give me the other antibody tests for MG or even try and treat the symptoms. Nobody wants to contradict the Consultants and Guys as they are supposedly the best in this area!!!! I have been passed onto a chronic fatigue clinic at Kings Hospital and am on the waiting list-possibly 3 months or more. I don't know how much more I can stand and my G.P is at a loss as to what to do with me. My husband is worried sick Can anyone advise me what I can do or someone I can see to help.....only I am so desperate. ---------- Andrea Hayes [UK]
sally1louiselouise 521 post s 8-Nov-2007 11:34 PM	Andrea, Don't worry about contradicting the Consultants or any other doctors. It is you body and you know how you feel and what is happening to it. Insist on going back to your consultant and have someone with you for support, you need to sort out the breathing issues quickly, go to you GP and be firm, you need to sort this out quickly, and to get the treatment that you so deserve. I wish you well and hope that you soon get the medication that can help you to improve. Take care......... ---------- South Wales UK
chairman MGA Chairman 616 post s 9-Nov-2007 1:06 AM	Andrea I think you need to discuss this with your GP and ask to be referred to another neurologist for a second opinion. Meanwhile, I will email you privately to ensure that you can get local help from MGA. ---------- Peter Finney MGA Chairman
Rhona 67 post s 9-Nov-2007 7:17 AM	Dear Andrea, I just wanted to write and tell you that I’m thinking of you. It is horrible when you feel so confused on top of feeling so ill. I was diagnosed with CFS for years until I was eventually given the correct diagnosis of MG. Hang in there, things will get better and although it is hard please try to keep calm. The stress of diagnosis can make things worse. One thing that struck me was your weight loss and the fact you feel nauseous a lot of the time and I wondered if you have had your thyroid tested. I have both graves disease (an overactive thyroid) and MG and it is common to have both together. If your thyroid was overactive it would also add to your stress level…Just a thought! I know that they may have tested it already but I have to say that I sometimes have symptoms of Graves when only my thyroid stimulating hormone (TSH) is high and that part of the test is not always taken into consideration. I just hope you get the help you need soon… Take care………….Rhona x
alan 17 post s 9-Nov-2007 8:36 AM	Andrea I'm sory you are so down and having problems with a diagnosis. I would suggest that you try to see a neurologist privatly which will be more quickly. I'm sure that the Chairman might be able to point you in the direction of a another hospital which has an MG department. Even one in another area. Get your GP to refer you and get diagnosed properly. After finding out your GP might still be able to to treat you NHS. I know that it might cost a bit to start but it would be worth it. good luck Alan
Andreafm 25 post s 9-Nov-2007 10:06 AM	Thank you so much for all your comments and advice. I managed to speak to the MGA Local Branch Chairman who was very kind and helpful and is going to come back to me with an alternative Consultant-hopefully the one at my local hospital will be o.k as the travelling into London has taken it out of me. I also have seen my G.P this morning who was pretty shocked at the way I am and has agreed to write to my Neurologist to ask about appropriate treatment. If she refuses he will refer me to another Consultant but he doesn't know of one personally. We don't have a lot of money [I am on DLA and my husband works from home] but possibly could fund a consultation to be seen quickly as it's getting too bad to wait too much longer. Does anyone know of a private consultant in the west london area that would be willing to see me for an initial consultation? I would be interested in hearing from anyone who has had a good experience from any Consultant within a reasonable travelling distance to me. Thanks again you have all really helped. ---------- Andrea Hayes [UK]
Mic 167 post s 9-Nov-2007 12:47 PM	Hi Andrea, So sorry you're having such a hard time at the mo. I too have been diagnosed as ocular myasthenia with no detectable antibody. Also, after a confirming diagnosis, it was subsequently thought to be Post Viral Syndrome (same as CFS). Two years later, it is now accepted that I have MG; more because of the obvious pstosis and facial weakness and relieving response to Mestinon. Strange that it is still considered ocular as I've never had significant double vision and it effects my upper torso (eyelids, face, neck, upper arms, chest, abdomen, upper legs) so much! My consultant can't 'see' the discomfort I have with the 5 latter symptoms - thank goodness there are some visual symptoms for him to see, otherwise I imagine I would have been filed away for the looney bin! In my experience, during the early stages of the disease, the sensation of limb weakness is more obvious to to the individual but is harder to detect from the standard neurological examination. I think is hard for drs to feel confident giving a diagnosis with a measurable marker e.g. an identifiable antibody. Fingers crossed for the blood test which will identify the elusive antibody that will assure a diagnosis for us. Mestinon is my life line. Its effect is very obvious for me and without it I really struggle. I tried all sorts of dosages to get it 'right', so know its effect pretty well. I was told by the late Prof Newson Davis that is a stimulant. However, I'd say no more than caffiene with regard to hyper-ing you up. If it works on the neuromuscular junction - you should know it and it shouldn't make you hyper. I agree with Rhona, perhaps there is another reason for that reaction. Mestinon was given to Gulf War Soldiers in case of exposure to nerve gas poisoning (being the antidote). So I think there is some evidence to show that you can give it to individuals without MG without obvious, immediate detrimental effects (Guld War Syndrome - dont go there!). A second opinion is always right. With a chronic disorder, it is so important to find an individual whom you trust and understands. You do not have to go private - there are several other centres in London - Kings (you're going there), St Georges.......your GP should have the means to find out the individuals who specialise in MG. Re LEMS..... I thinks there are some pretty classic symptoms which include a resistently dry mouth and constipation along with lower limb symptoms being the most prominent (apologies if I've simplified, LEMS sufferers might correct me). Keep strong and keep fighting. Mic x Last Edited on 9-Nov-2007 12:56 PM
Andreafm 26 post s 9-Nov-2007 4:05 PM	Hi there Thanks so much for the comments. Strangely enough I am extremely sensitive to caffiene and have been unable to drink tea or coffee [even green tea]. Even 1 cup sets me of feeling sick and very hyper. The reason for thinking on the lines of LEMS was the fact that it was my legs that suffered first over 12 years ago and the rest has gradually crept in. The facial muscles have only just happened in the last year I have the dry mouth [nose, eyes, ears] stomach and constipation. The eye drooping is not the biggest factor in my illness and it frustrates me that my neuro judges how I am based on that. I understand that you can also have sjorgeans and I may have been tested for that. But it was more the "legs upward" pattern and the dry mouth etc. Irrespective, either way I do not think it is Chronic Fatigue Syndrome as I have many books on this and the facial muscles do not feature in any of the books or on the internet [as far as I have found]. I did ask my Neuro to refer me onto Kings but she has basically point blank refused as in her words " You have had 3 of the top consultants look at you and It's Chronic Fatigue syndrome as lems is too rare for you to have". My arguement is someones got to have it and my illness must be rare if 4 other various top consultants had misdiagnosed me 5 times in 12 years. Before I came to them at Guys. Kings Hospital [although probably the best place] is attached to Guys and I did feel it may not be the best as the hosptals and Consultants are all interwound with eachother and sort of act like a club. I rather thought a totally fresh approach might be what it needs. But that might be because I am becoming a bit mistrustfull [who wouldn't be after 12 years] I'll give it some thought thanks and ask my G.P to refer me there if I can't find anywhere else. many thanks again ---------- Andrea Hayes [UK] Last Edited on 9-Nov-2007 4:11 PM

Please Help I am terribly ill.

I have been ill for over 12 years with muscle weakness and things have drastically gone down hill in the last year.

I was dignosed with MG Occular in August by EMG Test and they have been unable to find the MG in my arms etc. Also the basic antibody test was negative.

My consultants at Guys Hospital have now decided that I have got Chronic Fatigue Syndrome with OMG!!!!?????

Andrea, Don't worry about contradicting the Consultants or any other doctors. It is you body and you know how you feel and what is happening to it. Insist on going back to your consultant and have someone with you for support, you need to sort out the breathing issues quickly, go to you GP and be firm, you need to sort this out quickly, and to get the treatment that you so deserve.

I wish you well and hope that you soon get the medication that can help you to improve.

Take care.........

译：Andrea，不要担心你的私人医生或其他医生的说法不一致。自己的身体自己知道是什么感觉怎么回事。坚持看你的私人医生，找人帮助你，你需要尽快解决呼吸问题，去找你的GP，坚强点，你需要尽快解决这点，并接受你应该接受的治疗。

愿你好起来并尽快采取对你有效的治疗。

保重~

Andrea

I think you need to discuss this with your GP and ask to be referred to another neurologist for a second opinion.

Meanwhile, I will email you privately to ensure that you can get local help from MGA.

译：Andrea ，我想你应该与你的GP商讨并再找一位神经内科医生咨询，从而获得另外的诊断。

同时，我将私下发邮件给你以确保你从当地获得MGA的帮助.

Dear Andrea,

I just wanted to write and tell you that I’m thinking of you. It is horrible when you feel so confused on top of feeling so ill. I was diagnosed with CFS for years until I was eventually given the correct diagnosis of MG. Hang in there, things will get better and although it is hard please try to keep calm. The stress of diagnosis can make things worse. One thing that struck me was your weight loss and the fact you feel nauseous a lot of the time and I wondered if you have had your thyroid tested. I have both graves disease (an overactive thyroid) and MG and it is common to have both together. If your thyroid was overactive it would also add to your stress level…Just a thought! I know that they may have tested it already but I have to say that I sometimes have symptoms of Graves when only my thyroid stimulating hormone (TSH) is high and that part of the test is not always taken into consideration. I just hope you get the help you need soon…

Take care………….Rhona x

亲爱的Andrea,

我只想告诉你我对你的问题的想法。当你由于病得很重而心烦时，这是很糟糕的。我是用了几年才由CFS最终正确的确诊为MG。坚持下去，尽管艰难但事情会好起来的，请保持冷静。诊断的压力会使状况加重。我担心的是你的体重下降并且无食欲很长时间了，我想知道你是否作过甲状腺检查。我患有甲亢和MG，这二者并发是很常见的。如果你的甲状腺是亢进的也会加重你的病情——这仅是个猜测！我想知道你是否检查过而不得不这么说，我有时由于甲状腺功能亢进而使MG症状加重，而这部分检查往往被忽视。愿你尽快获得你需要的帮助。

保重~ Rhona x

［此帖子已被 sairicai 在 2007-11-14 15:43:53 编辑过］

在6-8个星期我已经失去了2个石头（stone不知是什么意思）。——由下文来看应是体重减轻的意思

【海蓝注】

英石 (单位)

［此帖子已被 海蓝港湾 在 2007-11-17 7:36:08 编辑过］

Andrea

I'm sory you are so down and having problems with a diagnosis. I would suggest that you try to see a neurologist privately which will be more quickly. I'm sure that the Chairman might be able to point you in the direction of a another hospital which has an MG department. Even one in another area.

Get your GP to refer you and get diagnosed properly. After finding out your GP might still be able to to treat you NHS. I know that it might cost a bit to start but it would be worth it.
good luck

Alan

Andrea，

我很难过你那么消沉并且难以确诊。我建议你尝试看神经科医生，以更快解决问题。我相信会长能指导你去看另外有MG专科的医院。甚至不只一家。

让你的GP帮助你并得到合适的诊断。找到你的GP后肯定能对付你的NHS。我知道刚开始可能会花点钱但是这是值得的。

祝你好运。

［此帖子已被 sairicai 在 2007-11-15 17:36:29 编辑过］

Thank you so much for all your comments and advice.

I managed to speak to the MGA Local Branch Chairman who was very kind and helpful and is going to come back to me with an alternative Consultant-hopefully the one at my local hospital will be o.k as the travelling into London has taken it out of me.

I also have seen my G.P this morning who was pretty shocked at the way I am and has agreed to write to my Neurologist to ask about appropriate treatment. If she refuses he will refer me to another Consultant but he doesn't know of one personally.

We don't have a lot of money [I am on DLA and my husband works from home] but possibly could fund a consultation to be seen quickly as it's getting too bad to wait too much longer.

Does anyone know of a private consultant in the west london area that would be willing to see me for an initial consultation?

I would be interested in hearing from anyone who has had a good experience from any Consultant within a reasonable travelling distance to me.

Thanks again you have all really helped.

非产感谢你们各位的评议。

我与当地MGA分会长取得了联系，他非常热心友好，并且将带我去当地我就诊的医院看一位有望提出可选择性治疗方案的私人医生，这样就好，因为去伦敦对我来说很困难。（晕人的句子）

我今早也看了我的GP，他对我的处境表示震惊并同意向我的神经科医生询问治疗方案。如果她拒绝，他将询问另外一位他个人不认识的医生。

我们没有很多钱（我在DLA，我丈夫在家），但是我们会尽快看一个会诊因为病情变得很糟糕不能久等了。

有人知道伦敦西区是否有能帮我确诊的医生吗？

我很想找一位离我比较近并从私人医生得到好经验的病友。

<DIV class=bz_msg_cont chatIndex="52C0E3CD7C4F1A18_2">stone is a british term for weight,  1 stone equals 14 pounds</DIV>

Hi Andrea,

So sorry you're having such a hard time at the mo.

很难过你在mo方面如此费周折。

I too have been diagnosed as ocular myasthenia with no detectable antibody. Also, after a confirming diagnosis, it was subsequently thought to be Post Viral Syndrome (same as CFS). Two years later, it is now accepted that I have MG; more because of the obvious pstosis and facial weakness and relieving response to Mestinon. Strange that it is still considered ocular as I've never had significant double vision and it effects my upper torso (eyelids, face, neck, upper arms, chest, abdomen, upper legs) so much! My consultant can't 'see' the discomfort I have with the 5 latter symptoms - thank goodness there are some visual symptoms for him to see, otherwise I imagine I would have been filed away for the looney bin! In my experience, during the early stages of the disease, the sensation of limb weakness is more obvious to to the individual but is harder to detect from the standard neurological examination.

我也被诊断为抗体呈阴性的眼肌型重症肌无力。同样的，在明确诊断之后，被认为是Post Viral Syndrome（同于CFS）。两年后的现在被认定为患有MG，由于明显的流泪和面部无力而使用吡啶斯的明。很奇怪虽然我没有复视问题却被认为是眼肌型，我的上肢症状很严重（眼睑，面部，颈部，上臂，胸部，腹部，大腿）。我的私人医生看不出我的后五种症状——谢天谢地有些显著的症状呈现给他看，另外我猜想我差点被送进疯人院。我的经验，在病的初期个人感觉肢体无力更明显但是很难被权威性的神经学检查发现。

注：CFS=慢性疲劳综合症。

注：GP=general practitioner 普通开业医生,非专科医生

Hi there

Thanks so much for the comments. Strangely enough I am extremely sensitive to caffiene and have been unable to drink tea or coffee [even green tea]. Even 1 cup sets me of feeling sick and very hyper.

非常感谢你说了这么多。我对咖啡因出奇的敏感，我不喝茶或咖啡（甚至绿茶）。一杯就会让我感到不舒服亢奋。

The reason for thinking on the lines of LEMS was the fact that it was my legs that suffered first over 12 years ago and the rest has gradually crept in. The facial muscles have only just happened in the last year I have the dry mouth [nose, eyes, ears] stomach and constipation. The eye drooping is not the biggest factor in my illness and it frustrates me that my neuro judges how I am based on that.

我考虑是LEMS的原因是12年前我的腿最初受累，休息可逐步缓解。面部无力仅仅是从去年开始。我有口干（鼻孔，眼睛，耳朵）胃部和便秘的症状。我的病程里眼睑下垂不是最大的问题，我的神经科医生基于此不能给我确诊。

I understand that you can also have sjorgeans and I may have been tested for that. But it was more the "legs upward" pattern and the dry mouth etc.

我明白你也患有sjorgeans，我为此检查过的。但是更多的是“无力抬腿”和口干等。

 I'll give it some thought thanks and ask my G.P to refer me there ——其中的thanks比较费解，只是凑合着翻译了。听听其他人的看法。~~~~