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Everything is going wrong
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TOPIC: Everything is going wrong

Re: Everything is going wrong 07 Mar 2012 06:10 #1733185

  • rogiet
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hi
just to say I emailed my nuro on the 19th feb with worries that i was getting worse and asked for appointment. none came so i rang his secretary and she said 'oh he looks at his emails when he gets time and he does not phone either so no need to ask that question' well i was shacked and as my worries got worse i went to see my own doctor who really has no idea about mg but said he would email my nuro with concern, guess what still no reply or appointment to see him. I have both eyes that wish to close also jaw not working as it should so am not eating much and my speach goes most the time so much for my nuro saying 'feel free to email me with any worries' so now i am going through PALS as i think the service and care i'm getting SUCKS

Re: Everything is going wrong 07 Mar 2012 09:22 #1733188

Sorry to hear that Rogie. GP's and Neuro's do seem to be different around the country. Mind you saying that I rang mine and still have not had an answer, but I see her on the 21st March, so I guess I can wait till then now. See GP in 1/2 hour.

Re: Everything is going wrong 07 Mar 2012 10:53 #1733189

  • hayley
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Hi Rogie

I am so sorry you are also having trouble with contacting your neuro. It very scary and having the added speech problems does not help.

Lets hope that PALS can get things moving for you. Are you in one of the areas which has an MG nurse? If so it may be worth contacting them.

My GP is being brilliant and is chasing my neuro for me today. Been put on more meds today to try and ease my cough. Thank goodness for medical exemption or I would be struggling with the costs of the prescriptions.

Fingers crossed that you get the help you need really soon. Hx

Re: Everything is going wrong 07 Mar 2012 11:22 #1733190

  • levitas
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hayley wrote:
Hi Rogie

Are you in one of the areas which has an MG nurse? If so it may be worth contacting them.

Hx


Just to clarify - The MG Specialist Nurses cover ALL the UK and Ireland, not just the hospital where they are based.

Re: Everything is going wrong 07 Mar 2012 13:31 #1733192

  • hayley
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Thanks Levitas. I didnt realise that. I thought it was more a postcode lottery and if you were lucky you had one.

I am VERY lucky as mine has worked hard for me this morning and has spoken to my neuro

I am stopping the Aza and starting some antibiotics which wont upset the MG so hopefully things will start to improve.

I hope Rogie and Green both get some help soon. Thinking of you both.

Re: Everything is going wrong 07 Mar 2012 15:48 #1733193

  • Green
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Thanks for thinking of me Hayley!

Well met my neurology consultant on monday evening, have come off azathioprine altogether and won't be going back on it, it seems to have really effected my liver, I had levels of enzymes (I think it was enzymes anyway) in my liver that matched levels of a very heavy drinker cause of the aza! Haven't had a drink since October with all this MG business!

So have more blood tests next week and an ultrasound of my liver to make sure everything is okay then as suspected I will be starting in cellcept in two weeks.

People seem to be so unlucky with doctors etc, it really is key to get a good team around you, neurologist,gp and the mg nurse, I have been very lucky with all three so far and the only thing holding me back is my own body! Once you get settled with people who understand you and mg you start feeling better about everything!

Re: Everything is going wrong 07 Mar 2012 19:21 #1733195

  • hayley
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I am really pleased for you Green.

Its obviously been a worrying time but now there is a light at the end of that tunnel (only a tiny one right now but its better than nothing).

I am sure Aza is a brilliant drug its just a shame it makes a few so poorly when they are already so low. I hope the cellcept has a better reaction.

I still need to wait for the next step but being off the Aza should help initially.

Takle care
Hx

Re: Everything is going wrong 08 Mar 2012 11:00 #1733198

  • lindam
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Dear Hayley,

I just read your story. I usually keep up better than I have, but as you may have read - I've been struggling with MG since I was diagnosed in January. This week I had to leave Bahrain where I lived to return to the US after 12 years because I couldn't get the care I needed there.

At the moment I am at Mayo Clinic in Minnesota and awaiting a March 12th series of consultations. I know one option will be to get on a non-steroidal immuno-suppresant with Aza or Cellcept being 2 choices, so I am following with interest your struggles, aware they may be mine next week!

Yuck, this MG is bad news!

I want you to know I am thinking of you, and hope they get you sorted quickly.

Warmly,
Linda

Re: Everything is going wrong 08 Mar 2012 12:40 #1733199

  • Bobbyjo
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Hi all...just to say I have just I started Methotrexate yesterday, which is another immune suppressant for MG and also other conditions, which I also have.

I had already taken Azathioprine and Cellcept, which I had to stop because it wasn't really doing the job and also the Liver blood tests were high.

I am still on prednisolone and desperate to find something other than this that will help so that I can reduce the steroids. I have been on them for over 2 years now and am beginning to suffer the consequences of this.

A lot of the medications are trial and error and what suits one person, may not suit another, so it is a matter of trying to hang on in there and working with the Doctors, making sure you relay any possible side affects etc.

I haven't seen messages from so many taking Methotrexate and so would be interested in knowing what I might be heading for, along with it maybe helping others that might be going through the list of Immune Suppressants available for this condition.

Thanks for bringing the question up

Andrea

Re: Everything is going wrong 08 Mar 2012 14:05 #1733200

  • Green
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Andrea,

Methotrexate is next on my list if cellcept doesn't work so I back your request for people's experiences with it. . . Although I hope the cellcept works and I dont have to go further down "the list"!

Steroids for two years, that's awful, I've been on them just over two months and I am dying to get off them, can't look at my huge face anymore, they have changed me completely although I am grateful they allow me to talk and eat I suppose!

Re: Everything is going wrong 08 Mar 2012 17:45 #1733201

  • ragdoll
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Hi, I've been on methotrexate for about 7 years, since 2005, it was the immune-suppresant that worked for me!

This topic has been raised quite a few times in the past, if you look under treatments you should find past posts on it, as well as on the original forum.

As I've said previously, it has been a miracle drug for me, with, so far, no discernible side effects, the occasional health scare, but no more than any other MG drug in the past! The level of functionality it has given me has been wonderful and did finally manage come off the steriods even for 8 months! but now on a low dose (10mg)

Good luck
Last Edit: 08 Mar 2012 17:47 by ragdoll.

Re: Everything is going wrong 08 Mar 2012 18:06 #1733202

  • Bobbyjo
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Thanks Ragdoll..that is reasurring and I hope it is as successful for me as I really need to get off the steroids.

I am sure this will be encouraging for others that might be having difficulties with other Immune Suppressants.

I will also check out the past posts thanks

Andrea

Re: Everything has gone wrong Cellept. 19 Jun 2012 16:42 #1734357

My GP rang me today and said she will not prescribe Cellcept as it is not licensed for MG! And not only that the blood tests cannot be done locally either! So she is writing to my Neurologist to get her to take the responsibility. And I assume the costs involved! So now I have to wait longer for it. Not only that but ATOS medical cancelled when I got there!

Re: Everything is going wrong 19 Jun 2012 16:46 #1734358

I think it is the cost involved for the blood test. When I first went to see my GP she said that I might have to go down to the surgery for my blood test prior to the neurologist's visit but he would have to sanction the good test because of cost. In the end it was done at the hospital and even then, held back until they had a bulk testing to reduce the cost
xx Di

Re: Everything is going wrong 19 Jun 2012 17:24 #1734360

I am certaon that will be part of it. Am starting to feel that it will now take forever to ge right now, even if that is possible?

Re: Everything is going wrong 19 Jun 2012 19:09 #1734364

  • Green
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Thats really unfortunate horse, i think its probably the same here in ireland, cellcept is known as a "hightech" drug here and you can only get a prescription from a consultant ina hospital and it has to be written out on a special form. I think its to do with a number of things, one of which is the cost, my dose costs about a thousand a week but luckily i get it free on a scheme we have here.

Hopefully ince you get sorted though you will get a pescription for 6 months and will be prepared to get a repeat appomtment/prescription before it runs out.

Hope it works for you too.... Ive been taking it almost three months now i think and no bad effects so far.... Possible appetite loss in the evening but thats a good thing right now i think! Coming off steroids slowly as im taking it so hopefully everything keeps working out well! Fingers crossed for for you!

Re: Everything is going wrong 19 Jun 2012 20:41 #1734368

  • CarolO
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Hi HUW.

Email your neuros secretary/PA and ask her to inform your neuro of the problems re the cellcept and the blood tests - ask for him/her to do the prescription and arrange the blood tests.
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