Just a quick update after my " Nasty Neuro " thread on Monday. I went as normal on Monday but I was the last patient of the day so I can only imagine that is why she treated me like she did. She told me that I was better, could walk well, she said that I stated I had weakness in my legs but her tests proved otherwise ( stand on one leg, now stand on the other leg ) and my reflexes were fine. Then she asked me why I had not been back to mental health. I told her that they didn’t want to see me again but she was so angry that I had not gone back that she did another referral demanding their diagnosis and underlined it so hard that she went through the paper! She said that she would see me again in 4 months because until I had the report from Mental Health, she could not sign me back on as fit!!! So I sat in shock and asked her what was wrong with me to which she replied " I don’t know" and then I asked her if I was going to be stuck like this, no comment. She then proceeded to talk to her nurse didn’t say goodbye or that she hoped I would feel better or anything! I was so upset I just got up and left. I read the referral to Mental health when I got home and couldn’t believe that she had written that I had had a nervous breakdown and had mixed personality disorder and that she thought I was putting it on! At that point I nearly did have a breakdown. So good old Mum stepped in and said she would pay for me to go private. I saw a private GP on Tuesday who said that I must be a good actor to put on what she could see were genuine symptoms and referred me straight to the chief Neurologist at the USP in Marbella. I saw him on Wednesday and he was wonderful. I had some very uncomfortable tests but got a diagnosis the same day!!! Can you believe it after 11 months of waiting. So I have been diagnosed with Myasthenia Gravis. It’s auto immune and termed as chronic because there is no cure ( like MS) but it can be controlled with medication and possibly a small operation in the future to remove my thymus gland. He said that I have it pretty bad because it has been left so long without being picked up and therefore treated! But the outlook is good, with the right treatment and disease management it’s not life shortening and the aim is to get me back to a virtually normal life. I am already on medication and the Neuro is going to send me his report on my diagnosis and loads of details about the disease, do’s and don’ts etc. I can’t tell you how it has affected me already. I am so pleased to final know what I have so that I can start to learn about it and how to live with it. I feel more in control and more upbeat because it was certainly starting to get me down. So no more Limbo land for me. I am now going to get an appointment with my GP to let her know because she has been very supportive the whole time and will ask her to refer me back to the Nasty Neuro so that she can refer me on to another hospital with a specialist unit where I can be treated. I just wanted to end by thanking you all for the support, help and advice you have all offered whilst I have been a member of this forum. I will still stay but am going to try to find a forum for my particular disease too. Thank you again Kirstie x
Fantastic resolution for you kirstie. I am so pleased that you finally have an answer and you sound so positive, I’m sure you will get the treatment and answers that you need. Best of luck with everything. Catherine xx
Hello Kirstie, I am really pleased that you have finally received a diagnosis. I don’t know anything about your condition but the fact that you can be treated and will get the proper care and advice now must be such a relief for you. Very best wishes for your treatment and feeling better. Sam xx
Well done your mum 
And thank heavens you saw someone who actually knew what he was doing!
I’m really pleased for you that you’ve finally got some closure on what’s been going on, and now you can get the right treatment
I hope it all works out brilliantly - and that the nasty neuro grovels at your feet for you not to make a complaint! (Although I think perhaps you should, AFTER you have the right referral.)
Karen x
Wonderful news Kirstie!!! Very pleased for you.
Pat x
Hello Catherine, Sam, Karen and Pat. Thank you for your lovely comments and best wishes. I know what you mean Karen but unfortunately I feel that there may not be much to be gained by complaining because they are so overstretched as it is. Just gonna move on and get my life back on track. I should imagine she will feel pretty bad as it is!!! Xxx
That is good news Kirstie - I am glad you have a resolution to your problem and add at last. Great that they should be able to treat it too. I hope your nasty neuro feels very small after this! Teresa xx
Thanks Teresa, it is still not something nice to have but at least I have a label now and will soon know what I am dealing with. I will keep you all posted about what the Nasty Neuro has to say!! Kirstie xx
well chuffin ell, eh?
Just shows that in this case, money did buy you peace of mind and a good doctor!
I am so pleased you finally have a dx which you can now learn about and hopefully, live a happier life.
Like me, you were given the run around and no wonder we lose our cool sometimes, eh?
I am now going to google MG and learn about it too.
Please do stay on this forum, as I have. We have some really good friends here.
Good luck to you and thanks to your dear mum too.
lots of extra special love, Polly xxx
Oh thanks Polly, you are such a sweetie. I text’ my hubbie after the appointment to tell him that I was not mad and he replied " of course you are". The whole family have been so supportive I don’t know what I would have don’t without them. Lots of love to you too Kirstie xx
Great I’m so glad you have answers - and as you say MG is very much so treatable and like with MS its about pacing yourself and watching out for the triggers like heat etc.
Severity depends on the type of myasthenia you have - I’d presume yours is adult onset general but they can also grade according to how much different parts of the body are affected (I think). I know a little on MG.
I’m so pleased you can finally try and fix your health.
Reemz
X
Hi Reemz, thanks for your message. Yes it’s adult onset. Unfortunately, I have been told that its pretty acute as its not just affecting my eyes face and kneck but also my limbs. The only symptom which didn’t fit was the tremors but after one of the tests where they inject a chemical and then test the muscle strength again, the tremors calmed. So the Neuro thinks that the tremors are a result of such muscle weakness. But hey, I was pleased that he was positive that they can get it under control. Just waiting for the blood tests to see how many antibodies I have. Love Kirstie xx
hi kirstie
congratulations on having found a neuro that will listen!!!
i read things wrong all the time and i thought myasthenia gravis was the morning sickness that duchess kate has!
always making a prat of myself.
anyway you can now tell nasty neuro that you dont need mental health and you have it in writing!
good luck on your journey back to normal life
carole x
Hi Carole, Blimey, thank goodness it’s not morning sickness, don’t want any more children, I have one aged 21, one aged 17 and a Grandson!! I think I might ask to keep my Thymus gland, pop it in a jar, take it to the nasty Neuro and tell her to stick it where the sun don’t shine!!, he he, only joking but she has led me a bit of a song and dance especially when I told her in August that my Nan suffered from the same condition. Although its not hereditary it wouldn’t have hurt them to check it! Kirstie xx