[Unsure81]

Hi everyone I hope you're all ok? I am very disheartened at the moment, I have a clinical diagnosis of MG and was doing well on mestinon only for 3/4 months before a trip at Christmas saw me go downhill and mestinon stop working so well. My Neuro increased my dose but when that didn't work he ordered a SFEMG. However, he said he was convinced of my diagnosis regardless of the results of my SFEMG which is next month...but then the letter to my GP seemed to suggest otherwise! I am off work from this flare up and doing better as long as I don't do too much...which is frustrating and I'm just trying to put everything out of my mind until next month but, if I'm honest, I've had enough of this roller coaster now.

I am reluctantly preparing myself to have to plead my case next month should my Neuro suddenly go back on everything he has ever said up to this point. I managed to get a record of all of my blood test for the past 10 years from my GP. As you all know, I am double seronegative but I know that my AChR reading last year showed a level in my blood, just not high enough for a positive result. I assumed it must be possible for people to have low levels in their system but then I read there should be none in the bloodstream. I then assumed the reference range was to allow for lab error or the mechanics of the test but I then read on another forum about people having readings of 0.00000 etc. My reading 10 years ago was 0.27nmol (the reference range was 0.5) and last year was 0.12nmol (the reference range was 0.25. I know the tests have changed in the last 10 years but I found it interesting that 10 years apart I have a level in my bloodstream which I would say discounts lab error (my Neuro also redid the test last year and if that third test also has a reading it may possibly give more weight to the case) and I also find it interesting that both times I am roughly at half the requirement of the reference range! Lucky me hey?!

I know people are always questioning the tests and how they detect the antibodies but I just wondered if any of you have any thoughts on this?

I go for my chest CT scan in the morning (which I'm dreading as I hate needles! Such a wimp! Lol!) so maybe by some miracle I will get an answer there....but I think my optimism is too dented to even hope at the moment!

Thanks everyone - I hope you're all doing ok x

[cait24]

I am antibody negative but my SFEMG came out abnormal. I am confident in my MG diagnosis. Are you on anything but Mestinon? Maybe it is time to try cellcept? My Mg has been progressive. It seems that about every 6 months, I take a significant step down and there is no going back. I am having a flare now. I was on 2000 cellcept and 540 of mestinon a day and 10 prednisone every other day. They had to up the pregnisone back to 20 a day and 660 of mestinon and do IVIG for the symptoms to subside again. There are other treatment option they may consider after your testing.

I hate prednisone and the side effects but it does give me a quick fix.

good luck
kathie

[Unsure81]

Hi Kathie

Thanks for your reply, I am on Mestinon 90mg 5xper day....but I seemed to go downhill on the 90mg and so I dropped it back down to 60mg, it doesn't resolve my weakness but does improve it a little and is better than the chest pressure I was getting with the 90mg! I keep wondering if I had a virus around the time I increased the dose and I am toying with the idea of trying to up it again incase it wasn't down to the mestinon? Ever since that flare up my voice gets very weak now as I talk which is odd!

My Neuro said steroids/immunosuppressants would be the next step and he indicated that he felt my case warranted a "therapeutic trial" regardless of the SFEMG results....but the letter to my GP said he wouldn't do the trial without further evidence....so I am confused?! I don't know if he is just covering himself on the letter as all tests have not been done (he said something about there being things he can and things he cannot say but he felt we were able to have a frank and honest discussion?) who knows?!

My Neuro has always been confident the MG is my diagnosis...and from the research I have done, I completely agree! I just hope I am being too sensitive about the letter and that he does what he has always said he would do which is to help me and that a negative test would not change my diagnosis or how he would treat me?

I suppose I am just arming myself with as much evidence I can find to support the diagnosis and these consistent low levels of ACHR antibodies are the best I've got right now....I just don't know what they mean?!

Thanks again.
Eve.x

[cait24]

Eve, I sure understand how uncertain you feel. It takes so long to get a diagnosis and then to hear your doctor question it is very unsettling. We have seen others on MG sites lose their diagnosis even with positive antibody test. It sounds like your doctor is trying to cover all the bases. And don't forget the insurance companies with their protocols and how that may have affected what he can say in formal records.

Try to hang tight. And remember, you can always find another neuro. It took me 3 to find a neuro that I was comfortable with the treatment course.

They did my sfemg on the muscle under my eye which are severely affected by MG. I had not taken my mestinon in several hours, had a 2 hour drive into the city and had a long walk from the parking garage to the hospital. I was severely fatigued by the time for the test. The test showed MG.

Also, if the thymus gland does not show a nodule, ask him if it shows an increased size or hyperplasia, another sign of MG.

Only about 80% of MGers ever have positive antibody, and many of the 80% are negative for several years before they turn positive. There are numerous new antibodies discovered related to MG which do not have commercial available test yet, like rapsyn, titin, LDP4 and striational. These tests are only available at a research hospital like Mayo clinic and John Hopkins.

best of luck
kathie

[MaureenNY]

Jeez, that has to be frustrating. All that mestonin and nothing else yet. Truth is when i started my messtonin I thought it was a wonder drug as time went on it became less effective and i had to play with the dosage, still do actually to get maximum benefit. It is only VERY recently that i feel anywhere near normal but i still have symptoms (too many to describe here) Truth is that its the prednisone.. that nasty stuff that has helped. I HATE it but it works. That having been said, I know you are stressing it but dont stress it until you are there, when they have to look you in the eye and tell you they "don't know". You have been on the sites, you know what the symptoms are and what they point to, just keep explaining how you feel and also how it affects your life, work family etc. Thats the stuff they need to hear. I told my doc about my issues with traveling and how that was impacting my life... she made changes based on that.. everyone is different, so just give them all the info you can and see what they come up with. The CT scan may show something and that brings up a whole new set of issues that i am just beginning to deal with... Take it one day at a time if you can... thats what i am trying to do.. easy to say.. hard to do... best wishes

Maureen

[AnnieB3]

Eve, Doubt isn't fun to live with. Sometimes doctors are more hesitant in the "black and white" notes than they are in person. It's a legal thing.

Has anyone checked your IgG levels? There are four "subclasses" of that immunoglobulin: IgG1, IgG2, IgG3, and IgG4. If you have a deficiency of all of some of those levels, your antibody test can be falsely negative. They use different immunoglobulins for different antibody tests. For example, they use IgA for the celiac antibody test.

Have you ever seen a pulmonologist or had MIP and MEP done? It might help to have more "proof" for your neuro.

Many doctors have a tough time with a lack of so-called "evidence." That's why MG is a clinical diagnosis backed up with tests. A negative test doesn't prove a positive! In other words, a negative test doesn't prove you don't or do have MG.

You get weaker the more you do and better when you rest, right? Trust in that. Trust your instincts!

I hope the SFEMG and your doctoring go well!

Annie

[Unsure81]

Thank you Kathie and Maureen for your replies, support and advice....I just feel a little defeated with the constant rounds of Doctors, Tests and months between waiting without really getting anywhere. I feel like I am jumping through hoops and I am starting to wonder what for...and if it is worth the stress and energy that in turn just makes me worse!

Annie, thank you for your advice, I hope you're right and he is just being hesitant in his letter. My Dad always comes to the appointments with me as it is a 2hr drive and he always says it all goes over his head but he was surprised by the letter too as he said whenever we have seen my neuro he has been adamant that my symptoms have to be MG....he also says the tests are not always positive, there are cases where the patient has to accept that the diagnosis is clinical and that the treatment poses risks. He did mention something about there being things he can say, and things he cannot say but that he felt we were able to have a full and frank conversation (I saw him privately on that appointment but I am back on the NHS now with him so maybe that changes things a little?!)....but his letter has thrown me and left me feeling very uneasy about everything! I actually specifically asked if a negative SFEMG would change my diagnosis and efectively how he would treat me and he said no, but I had some breathing issues a couple of weeks later and had to call him he seemed a little off and said how he needed the SFEMG done before steroids because of all the risks etc (In his defense, he was meant to be on holiday and was in catching up on paperwork, including the letter from my appointment, and I had spoken to his Registrar after being told to do so by my GP and she was wanting to admit me for steroids! So maybe that got his back up or he was having a bad day....I just hope it hasn't affected my situation!)

Sorry, I went off course a little there!! As far as I am aware I haven't had any of the tests you listed there, just the AChR and MuSK tests. I am in the UK and they don't seem to refer to Pulmonologist, I read of lots of you seeing them as part of your system in America. I did do a Spirometry test and struggled to blow a consistent breath, I needed a break to get the 3 breaths in the required range and then after the ventolin, I blew worse!! My GP didn't know what it meant but said she wasn't worried as I was within the range for my age on the first breaths....I wondered if it showed fatiguability of the muscles and so did the nurse who did the test?

I definitely improve with rest and my mestinon works better when I am rested, if I try to do too much my mestinon won't work at all at times!! Since this last flare up my voice seems to have become affected, everyone keeps asking if I have a cold as I sound croaky BUT the strange thing is that if I don't talk for 15-20mins my voice comes back as clear as ever but when I start to talk I get croakier and croakier and talking becomes more and more of an effort until I rest my voice again?!

Thanks again
Eve.x

[AnnieB3]

Eve, I'm sorry that you can't get in to see a pulmonologist. That's really silly! Regular PFT's are okay but they do not show how you are breathing in and out as well as MIP/MEP.

Rach is in the UK, too. Got any recommendations for her, Rach? Thanks.

I hope your neuro will not dismiss the obvious response you've had to treatments, and the clinical presentation of MG!

Annie