Hi everyone

I just want to say a big thank you to you all and it looks very much like goodbye from me. Waiting for the SFEMG has been difficult as I was dreading a negative result and the removal of my diagnosis....and it looks very much like that is the way things are going to go...

As some of you know my Neuro had been certain of my diagnosis despite negative AChR and MuSK and an "unremarkable" NCS/EMG. Mestinon was a Godsend for 3/4 months and secured my "Clinical Diagnosis" but then a trip away with my daughters turned everything on its head and the Mestinon "Magic" waned. After upping my Mestinon dose my Neuro had assured me (and my Father) that my diagnosis was solid and that a negative SFEMG would not change my diagnosis/treatment. I then hit a bad exasperation (maybe a virus) and a letter to my GP seemed to indicate a less certain diagnosis and a complete backtrack on all of the assurances he had given me. My Father was sure the letter was just my Neuro covering himself as he also felt that at every appointment my Neuro had been very positive and assured of the diagnosis, he had indicated that negative tests are possible and that to proceed to steroids would need me to accept the risks in light of the fact that we had no evidence to back up the Clinical Diagnosis....I, on the other hand, was not so convinced!

So....I arrived for my SFEMG yesterday under the impression I was also having an appointment with my Neuro, unfortunately this was not the case. We were called into the room for the test and my Neuro came in to say that he was leaving for the day and he would review the results and be in touch. I felt bad that the Dr doing the test was stood waiting to start the test but I asked my Neuro if there was any validation of my symptoms in the consistent low levels of AChR antibody levels in my blood (My reading 10 years ago was 0.27 and last year was 0.12) he dismissed them and said that both were negative and though there is much debate on this there is an acceptable level allowed in the bloodstream hence the reference range. I then asked where I stand if the result is negative and he said this was the end of the road - my face was evidently drooping and if a SFEMG into a weak muscle was negative then there is nothing to find....which I do understand and accept but I felt a little mislead by previous discussions. I also understand, and to a degree, I am relieved that he would not trial steroids without any evidence to back up the diagnosis due to their risks but the fact that this now seems to put my diagnosis onto shaky ground is upsetting after everything it took to get one in the first place. He said that I can keep Mestinon as it does still help a little...but whether he will change his mind on that remains to be seen. I asked what options I had available to me and he said my best option would be Plastic Surgery (?!?!?) My Dad then asked what about the fatigue elements and he said that if I was his family member he would recommend an ME centre for a graded exercise program...but seemed reluctant about the ME part saying "for want of a better way to say it"?! Who knows!! In his defence he said that Dr doing the test was very good but that it would be his decision as to whether the result was positive or negative not the Dr doing it and so, in my Neuro's defence, I felt that he was saying that if there was anything that would back up the diagnosis he would accept it and not necessarily stick to the test guidelines of what is positive/negative?? But that may just be my interpretation!!

The test itself was ok, some parts were painful but manly it was just uncomfortable, I felt the Dr doing it was much better than the one who did my EMG - he tested along my right eyebrow and above it for an hour. I have to say that I felt he was really thorough and if nothing showed then I don't think I could dispute what he did (not that I know what I am looking for!!) I was listening to the strange noises from the machine trying to work out if the noisy or more silent readings were more significant....or neither and it all meant nothing! At the end he asked if I'd had botox, I said "no" but asked why and he said it can produce the same abnormalities MG and he'd had a patient the week before who had so he thought he would ask? I had to look upwards for all of it and felt very weak and shaky all over after - he noted that my eye had drooped more than it was before the test - which was expected I suppose! While my Neuro had been in the room before the test they had said that the Dr would need to analyse the result and I would not get the results there and then (and my Neuro also wanted the final say on it) but afterwards the Dr did say that they can usually tell straight away if it is "Dramatically Abnormal" and mine was not, but he needed to have a closer look and do the calculations. I fear he was trying to gently prepare me for a negative result...though my Dad thinks he must have found something due to the botox question! Who knows?!

I have to say....I really feel like this is it and this is the end of the road. It is safe to say that I will not be going down the Plastic Surgery route and I am somewhat relieved that it has not been suggested that this is all in my head as I don't think they recommend Plastic Surgery in those cases?! I may write a pleading letter to him to ask if he will allow me to have any new test that becomes available for MG due to the fact that he has been so convinced of the diagnosis and said there is nothing else it can possibly be!! But beyond that, it looks like I am dismissed and need to find a way to get on with it! The graded exercise is something I can do myself...though it makes no sense to me to be ME as I was very fit when I got ill exercising 3 times a week, working with 2 young daughters and leading an active life so its not like I had deconditioned into fatigue and activity/exercise intolerance?!

I wonder what my final Official diagnosis will be this time....I assume the Clinical MG will be removed and I will be left with no explanation to offer the people who wonder if I've had a stroke due to my facial droop! Who knows, maybe I am a mystery or maybe one day they will place all the pieces of the puzzle and I, like many I am sure, will finally have a confirmed diagnosis of some form/variant of MG. Until then, I will change my diet and maybe try some alternative therapies and try to do whatever I can to help myself.

I just want to say a HUGE thank you to each and every one of you, your posts have educated me and given me the strength to pursue things to this point and I am very grateful to you all for that. You are all such an inspiration and I will call in to see how you are all doing from time to time, but I fear this is no longer my place, I feel like a fraud and It doesn't feel right to contribute here without actually suffering from MG as you all are.

Thanks again
Eve.x

I am new round here. I am not yet officially diagnosed, and suspect that I may have trouble getting that diagnosis. But I think I have MG and until the doctors can find something that fits my symptoms better, then that will be my conclusion.

If the doctors cannot offer you a proper diagnosis, then I think you are equally entitled to the same conclusion as me. And I think the people here would be happy to have your comments and offer what support we can.

Dear Eve,

I post on various threads and ones for which I do not have the specific disease. (Example: I post on threads in the MS forum and I do not have MS, at least I have not been diagnosed with it.) And I don't have MG, either, but I am posting a response to you.

Your comments are just as valid as anyone else. Please do not feel that you need to bow out because you may not have MG. You have symptoms of something. We share our stories, offer support, and care, regardless of the specific ailment.

I am disappointed to hear that you will be leaving us and hope that it is only because you feel that we can no longer be of any help to you. But, consider this, maybe you are helping others by your presence.

Whatever you decide, know that you are welcome here. Wishing you the best and that you find the answers you seek. Are you sure you do not want to stick with us on your journey to find out what is ailing you? You are NOT a fraud, you are a contributor.

Best wishes to you. Please re-consider leaving us.

I would be very interested in finding out how your case works out. I am also seronegative, and I often wonder if my diagnosis is correct.

I just want to say {{THANK YOU}} for posting your story here. I truly appreciate everyone who takes the time to share their unique experiences.

It really amazes me when a post has 2 "replies" but 500 "views."

Eve, Wait just a damn minute!

You're making an awful lot of assumptions here. There is no way to tell what the doctor will say or do or not! Are you one of those people who need to know the end of a movie or book before you see or read it?

ME/CFS and MG are completely different animals. And a good doctor will methodically go about trying to figure out exactly what a patient has. Or not.

You obviously have fatigable muscle weakness. That is NOT the same as "feeling" fatigued after an activity, as in ME/CFS.

You're in the UK, right? The number of people in England and other Northern European countries who have CMS is relatively high. Have they considered that this is a genetic disorder? Does anyone in your family have similar symptoms?

It still could be MG. Not many doctors can conduct the SFEMG well. AND analyzing it takes hours. It's not as great of a test as doctors would have us believe.

MG is a clinical diagnosis that is backed up with tests. A negative proves NOTHING. Your dramatic response to Mestinon, however, is highly indicative of having MG or a CMS.

The reason Mestinon "wanes" is because the more you do, the weaker you get! Mestinon works great but it will not stop weakness from getting worse the more you do!!! It's similar to thinking acetaminophen will help mild back pain AND a raging headache. It would probably help the back pain but not the headache.

The severity of MG is what waxes and wanes, and that's why people who have more severe symptoms need immunosuppression instead of only a "helper" drug like Mestinon.

You need support right now. We're here to help, whether or not this ends up being MG! The MG diagnostic process can be long and frustrating. There is absolutely no need for you to go through it alone!!!

Even if the SFEMG is negative, that does not mean that you don't have MG.

I highly suggest that you spend a day pampering yourself, and not thinking for one millisecond about doctors or doctoring!


Annie



http://www.meassociation.org.uk/abou...osis-of-mecfs/

Hi Eve,

I feel like I could be reading my own story. I too was told I had ME after visiting an MG centre of excellence for tests, I don't have ME I've never had ME.

I also know the feeling of needing to disappear from the forum - you feel like, I havent got MG so I am a fraud if I continue to be here, I am wasting peoples time by being here.

Let me assure without two members of this forum I wouldn't have made it through the last 7 years. I also got a lot of peoples support on here and knew I had some place to vent if I needed it. Don't disappear!

I hate to tell you this but a diagnosis of ME in the UK 99 times out of 100 is a throw away diagnosis and they are telling you (without saying it) the illness is psychological. Most drs in the UK treat ME as a psychological illness not a physical one. So the doctor is in my opinion telling you that because he can't find out what is wrong with you then its your fault as its all in your head.

You may disagree with me but having seen this happen since 1989 in the UK I know that this is what Doctors do. First you will be offered graded exercise and when that makes you worse you will be told you don't want to get well/ you aren't trying hard enough. Then you will be told to take part in CBT the whole purpose of the CBT is to get you to convince yourself you aren't ill and to push yourself beyond your physical limitations. You won't be allowed to talk about your illness during the sessions as that as seen as encouraging your belief that you are ill.

When you don't recover with the CBT you will once again be told its because you didnt try hard enough / don't want to get better. You will then receive the diagnosis of somatiform disorder on top of the ME and all medical treatments and tests will be denied to you because you are "seeking" medical care / attention, so they believe its in your best interests to ignore any new symptoms you may develop.

Think this couldn't happen to you It happened to me although I dodged the official ME diagnosis. The wheels are already in motion, be aware that this is already happening.

I dont mean to frighten you I just want you to be aware that this is now the situation you face. Neurologists in the UK seem to like diagnosing patients with ME when they can't figure out what's wrong with them.

Rach

Hi Unsure81,

I'm so sorry to hear about your situation. It's completely frustrating

I recently had an EMG & SFEMG for myasthenia where the Dr kept declaring everything was normal throughout the process.

It was unnerving. In one respect it's a relief but on the other hand it feels as though they're dismissing all your symptoms as being a figment or your imagination.

I now have an alternative diagnosis and need to do undertake a specific EMG test to confirm this diagnosis but I'm now a bit scared of EMGs.

I don't know your back story and symptoms but are they certain that there isn't another neurological explanations for your weakness?

The one thing that really helped me get to the bottom of things was to think back over all the symptoms I'd had during the past few years and make a list of dates of onset.

There were lot's of things that I thought were totally unrelated but were actually all being caused by the same thing. It finally got me to the diagnosis.

I don't know if this will help in your case but it turns out that there were some things I completely overlooked.

I truly hope things get better for you. It's still worthwhile following up with your neurologist or asking for a referral. People know their own bodies and we know when something has changed or malfunctioned even if we can't put our finger on what caused it. All the best and stick around the forums until you get to the bottom of this.

Thank you all for your kind words and support - it really does help and I am grateful to you all. I still haven't heard about my results, I don't know how long the results takes - I suppose it varies from person to person and Dr to Dr! He said he would write to me or maybe phone so logic tells me that the absence of a phonecall probably indicates a dismissive letter in the post at some point! Part of me is relieved to not have to have another appointment or face the risks of steroids but part of me wants to be better than this and feels like I'm giving in by not pushing it!! The problem is that this is my 2nd Neuro - Neuro#1 was the best my town has to offer and Neuro#2 is an MG Specialist in a University Hospital, taking National Referrals, Running an MG clinic so a dismissal from him will most likely mean my GP will not refer me to anyone else unless she thinks another specialist area is worth looking at....but my symptoms seem to point to Neurology and I can't see there being a case to see another Neurologist? I've had all the tests, I suppose its all down to the interpretation of those tests but here in the UK they seem reluctant to let us have copies of the results...though I still might try to get them for future reference!!

JulieJayne - I really hope you get your diagnosis quickly and easily!

Annie - Your post made me laugh - Yes, I am an over-analyzer! haha!! I have every eventuality of the film assessed in my mind....but I do try not to spoil everyone else's enjoyment by saying anything out loud!! haha. There has been no mention of CMS but my Mum recently told me that lots of people in her family have a droopy eye on some photos (not all) but that they have had no any other problems/symptoms so maybe there is a weak strain?! The pamper day sounds like a very good idea! Thank you!

Rach - Thanks for your post and don't worry, I understand the implications of the ME diagnosis and how desperate Dr's are to get rid of you once all the tests are negative!! I'm aware that the psychological label isn't far behind and that's one of the reasons I am not wanting to push this much more - it seems the more you push (despite only wanting to have an answer and chance to get better which to me seems perfectly normal!) the more that seems to lead to a diagnosis of psychological origin!!

Thanks again everyone - I hope you're all managing to have a good weekend x

Eve, I think you should gather some photos of family and see if there is one side that is more dominantly droopy. There are some CMSs where people have too much acetylcholine. That's why knowing exactly what you have is so important. Those people actually, for example, take quinine (as is found in tonic water). That would make someone with MG or other CMSs worse. And people with LEMS.

There's also something called Familial ptosis, however it isn't fatigable and it doesn't involve more than the eyes.

I am so appalled at the treatment patients have in the NHS. I just don't get it. So many doctors seem so illogical and unscientific. And the way they treat women makes my blood boil.

You probably figured out The Sixth Sense in the first minute, as I did (if you saw it).

I hope you get answer soon!!!

Annie