[rach73]

Hi,

some of you will be familiar with my story......for those of you who aren't I have posted before (seronegative patients how did you get your diagnosis, angry grrrr and does this sound familiar).

I had to ring my GP today as I have or now had a hospital appt at end of July to do with a seperate issue. I informed GP today that Im no longer taking lamotrigine and the reasons why. I also asked for a referral to another hospital to see a different neurologist. His response was that he wasn't saying no, but we needed to have a long chat and he wanted my husband present. Something he's never requested before, although hubs has accompanied me many times as I am no longer able to get to the surgery alone. I feel the sympathetic act, a pat on the head and being told to run along happening here.

I think GP is sticking with the BS diagnosis of Cortical Plasticity, despite the fact that Im showing all the classic signs of MG. The point of the meeting is and I know Im guessing, is to try and get me to accept this diagnosis and to not get the referral. As obviously this costs money. The spanner in his works is that I will pay to see them privately.

How do I approach this meeting? I dont want to come across as the hysterical female clinging onto a diagnosis. Im obviously angry and frustrated and the total incompetance being shown towards me.

What do I do? I have the footage of my positive but regarded as negative tensilon test do I take that.

I need some sound advice as this meeting is crucial as my GP is under the belief that this is stress/ mental health based, yet when Ive asked to see the mental health team its come to nothing. Im not taking medication for a mental health issue.

Obviously the UK system is very different to the USA.

I haven't had a response from Angela Vincent, nor have I had a response from the National hospital of Neurology and neurosurgery.

Im at my wits end.......Any responses will be greatly appreciated.

Thanks
Rach

[Joanmarie63]

Rach,

Print things about MG off the computer and bring the tensilon results with you and explain that ANY improvement from the shot is noteworthy. DO NOT give up and explain to the Dr. that you will not tolerate being told it is mental "as we ALL have been told that by one Dr or another" You are a strong person and I know you will be able to do it. My question is, why is your Dr. so against it being MG, as him that and see what his answer is. as your GP he should be happy to send you to another Neruro. I don't understand why he is being so bullheaded. But like I said ask him "why" he is so against it. Please let us know how it goes.

Big Hugs

[TxSimon]

Rach,
I don't know the solution, but will keep you in my prayers as you go thru this battle. If you feel strongly, don't back away from your feelings, as I have found out that we know our bodies better than others! Keep the faith and know I'm thinking of you!
Big Hugs to you,
Simon

[ras1256]

Rach,
Since he has requested the "long chat" take advantage of it. Go into with an open mind - not that it's mental, we all know better! - but so you can respond to him reasonably and rationally. DO take some information about being sero-negative and still having MG - point out that the MUSK antibody was relatively recently discovered to be MG related and the stats on that. But also ask him what convinces him that you do not have MG, or some other neuro problem, rather than a "mental" situation.

Make sure the info you take is from respected sources, let him know that you have done a lot of research and what you have found. Tell him if it's not MG, it is something else and that you NEED someone to keep checking - there are so many illnesses, conditions and tests! Let him know that it's not necessarily an MG diagnosis you need, but a diagnosis that makes sense with what you are experiencing, and you are not willing to stop at the old easy "mental" thing. There are too many other possibilities to be explored and you need someone willing, knowlegeable and able to help you explore them.

Even as I tell you to go with an open mind, though, you have to be prepared for the possibility that you won't be able to convince HIM to do the same. But no matter what, stay rational during the conversation. You've already hit too many road blocks in your search and you really need to turn this guy around if at all possible. If you give in to emotions, which is completely natural - I've done it!, you give them validation for suspecting mental issues. They often just cannot grasp the concept that this serious a health issue and change in your life can cause depression instead of depression causing the problems!

Best of luck to you, hon! Just stay "in charge" - firm, but reasonable. We'll be pulling for you!

Becky

[SharS]

Rach, I am so, so sorry for what you are going through. I can't remember if you've talked about this before, but can you go to a different GP - start over there since you have to be "referred" to a neuro? If not, it's really tough but you have to try to stay strong and work with him from where he's coming from.

I agree with others that it's a good idea to ask him about himself - what is HIS reasoning for diagnosing or not diagnosing MG? Could it help to tell him that you're on this forum and talk to many people in the US and other parts of the world who have been diagnosed with MG without having positive results from tests? That, instead, some people are diagnosed based on clinical assessments and response to treatment with Mestinon?

Have you been on the website, www.myasthenia.org? They have a new booklet for health care providers that can be downloaded. It lists a lot of stats including info about people diagnosed with and without positive test results. I can't remember all it says but I think you might find some helpful info there and it is definitely credible and well respected.

I'm praying for you and thinking about you. Just remember you have strong supporters here and strong family support and let that help give you confidence and strength.

Take care,

[rach73]

Thank you so much for this link. That booklet is excellent and states in black and white that during the tensilon test ANY CHANGE IN MUSCLE WEAKNESS PARTICULARLY PTOSIS- IS A POSITIVE TEST!
You have made my day!

Thanks everyone for your support, its nice to know that I can count on you guys when the chips are down. Its also nice to know people are praying for me. Im not religious, but its doing something, so keep it up I may just have a go myself!

Lots of love
Rach

[erinhermes]

Hey hon! I am sooooo glad Shar posted that! Wow! Just remember that MOST dr's THINK THEY ARE GOD and any show of emotion is a show of weakness........sad, but true!

I really and truly empathize, b/c I have been through the same thing, even with EVERY test for MG coming up positive, so I can imagine your anger, but don't let "them" break you down. You deserve an answer for your problems - it is not in your head - we all know that! I have often said that all of our dr's, family members and friends that don;t believe us should feel the way WE feel - it would give them some insight!

Hang in there and know that I will be praying for you!

Love
Erin

[rach73]

having a really rough time of it this evening. Only 2 hours into a dose of mestinon bilateral ptosis, unable to swallow, unable to support my own head, drooling and sad face.I also had problems breathing. I took another two tablets and within 45mins symptoms resolved. However now have the twitches! I will be keeping a serious eye on myself.

The stress of everything I have going on at the moment finally got to me today. I feel like Im fighting on all fronts.

Hubs is being really supportive and I have been "sent" to bed with the laptop- without the charger, so I have maximum of an hour on here!

Thanks everyone for all there support. Hopefully this is just a little dip caused by the emotion of the situation.

Love
Rach

[erinhermes]

Oh, sweetheart!I am so sorry to hear you are having a rough time! When are those dr's going to get real and realize you HAVE MG!!!!!!!!!!

What do they want? An alien to pop out of your stomach (like Alien) and announce to the world "I have MG?" I just sooooo do not get it! It makes me so mad when good people suffer needlessly!

Originally Posted by rach73

having a really rough time of it this evening. Only 2 hours into a dose of mestinon bilateral ptosis, unable to swallow, unable to support my own head, drooling and sad face.I also had problems breathing. I took another two tablets and within 45mins symptoms resolved. However now have the twitches! I will be keeping a serious eye on myself.

The stress of everything I have going on at the moment finally got to me today. I feel like Im fighting on all fronts.

Hubs is being really supportive and I have been "sent" to bed with the laptop- without the charger, so I have maximum of an hour on here!

Thanks everyone for all there support. Hopefully this is just a little dip caused by the emotion of the situation.

Love
Rach

[erinhermes]

Oh, sweetheart!I am so sorry to hear you are having a rough time! When are those dr's going to get real and realize you HAVE MG!!!!!!!!!!

What do they want? An alien to pop out of your stomach (like Alien) and announce to the world "I have MG?" I just sooooo do not get it! It makes me so mad when good people suffer needlessly!


I am having a tough day as well. I'm on my 5th Mestinon since 9:00 am.......Fortunately my neuro leaves it to my discrection when it comes to dosing......some days I am able to get by with 2 or 3, some days 6 or 7.

I KNOW I am the BIGGEST HYPOCRITE on this site, but try to not stress too much!

Just relax and let your wonderful hubby pamper you!

Love,
Erin

Originally Posted by rach73

having a really rough time of it this evening. Only 2 hours into a dose of mestinon bilateral ptosis, unable to swallow, unable to support my own head, drooling and sad face.I also had problems breathing. I took another two tablets and within 45mins symptoms resolved. However now have the twitches! I will be keeping a serious eye on myself.

The stress of everything I have going on at the moment finally got to me today. I feel like Im fighting on all fronts.

Hubs is being really supportive and I have been "sent" to bed with the laptop- without the charger, so I have maximum of an hour on here!

Thanks everyone for all there support. Hopefully this is just a little dip caused by the emotion of the situation.

Love
Rach