11yrs and finally they say sorry

[haze]

Hi everyone

 

after a recent appointment for my internuclear opthalmegia they decided to apply for all my case notes from everyone who had been dealing with my ms to see what was going on and to begin treatment figmolid is my best attempt to spell it and sativex and to help my ms speacilist and bang. They sat us down and said due to the evidence they have launched an internal enquiry as to why i have been left untreated for 11yrs when there was a firm diagnosis of relapse remiting which now they think is secondary or primary . I am not mad as i knew eventually the truth would surface and my local nhs as bad rep for making mistakes and to be honest i just won't it slowed down fast as recently im noticing im really struggling and this scares me. My right side is weaker by 40% to the left and my vision is a mess to the point i cried in the trafford center on saturday as it was to busy and kept bumping into everyone and thing and hated it. I have two kiddies and i think not seeing as good is really my concern

 

Hazey is not fantazyxx

[Scully]

Hello Haze,

 

Well, at last, after all this time, they have decided to offer you some treatment. I can't understand how teams of Neuros and GP's etc. somehow, let you slip through the net and didnt apply any sort of treatment to you at the beginning!

 

Hopefully you will now receive some treatment to make you feel better.

 

Scully

x

[Hezza]

Haze,

I know it's a little late but at least now you do have some support from the medical team now and will hopefully receive some treatment that will help with your symptoms and may help with progression too.

 

It's good to hear that they are launching an inquiry internally as hopefully some lessons will be learnt that may ultimately help others who find themselves in a similar position.

 

[Christina]

Gosh Haze, you must be pretty shocked at this news! I'm sorry to hear this has happened. I think I would be pretty angry personally and am glad they are investigating.

You mention fingolimod? It's not yet been decided that the NHS can prescribe this drug, I think the decision is coming next week and I'm pretty sure the answer will be no. Are they putting you on a clinical research trial, as to my knowledge that's the only avenue for taking it just now?

Chris x

[eliza]

Glad you are at last being sorted out. I dont want to pinch your post, however I have had problems with my eyes for the past 4 years I have in past years I have had optic neuritis in both eyes.

 

Do you have stiffness in your eyes especially at evenings and night. I have been told I have dry eyes, well I think its more than that. I can feel the dry eyes. then there is a painfull stiffness and need to shut my eyes. No one listens it hurts when you move your eyeball around is this anything you have experienced?

 

Any one else had similar?

[Willow]

Hello Haze.........11 years bless your heart that is shocking, I hope that now they will look after you properly xxx

[haze]

Hi to all

 

first to chris the answer is yes im have a weird allergy to rubber and fabric dressing so they have offered me figmilod or bg12 i understand iam blessed to have this drug as it brand new so i will keep you updated i think they will go with bg12 as figmilod will cause further issues with my vision as it swell's up the retina nerves and for me it would be a disaster, to eliza yes i write this thread i have sun glasses on my eyes hurt at the end of the day and are very stiff and run like crying this is like i said to chris taking figmilod would irritate my vision please ask my anything else as i am being offered all sorts so i don't take legal action which im still debating but im so shattered i want to sleep.

 

HAZY IS DOZY

[Christina]

Hi Haze

 

I'm guessing your local primary care trust must have agreed to fund fingolimod just for you then? Im not certain what Bg12 is, perhaps you could enlighten me? I am glad they are offering you some treatment now. It must feel like shutting the door, after the horse has bolted I'm afraid. Most treatments are aimed at people with relapsing remitting, they don't seem to work for people with SPMS or PPMS. They must feel there is something to be gained from fingolimod in your case. I have read, I think, that there is shortly to be a trial of this drug for secondary progressive.

 

I think you're right, they must be a bit worried you might decide to sue.

 

Chris x

[haze]

Hello chris

 

bg12 is tablet form treating ms that is difficult to respond to the forms i belive, i cant take injections or have cannulas in i swell up instanly and burn so as they have been slapped and trying to avoid being sued i think why not box them in my stomach is ulcered due to all the steriods and counter med's from having huge steriod dose for 11yrs so they have to offer me the new tablet for ms i will keep everyone up to date with what they offer and how it goes and hopefully help others who constantly get told no money bog off. Do you know how effective sativex is a relaxant and do you anything than can help with fatigue

 

Sorry your not a moderator anymore but glad your staying around

 

HAZEYXX

[Christina]

I just looked BG12 up Haze. As you say, it's the latest oral drug for MS, produced by , Biogen, who are shortly seeking EU approval. So, something to keep our eye on. It must be very difficult being allergic to cannulas and injections

Sativex is claimed to work well by lots of people. Again, there are fairly strict criteria around prescribing. PCTs are only allowing named patient prescribing at the moment, if the neuro agrees it's likely to help.

 

There are a couple of tablets that might help with fatigue. Modafinil and amantadine. It's probably worth asking your MS Nurse or neurologist about them. I've never tried them, I just try and manage my fatigue really. There are members here who have used them, so hopefully they will be able to tell you the ups and downs of this med.

 

Chris x

Edited 13 Mar 2012, 11:25 pm by Christina

[haze]

Hi Chris

 

sativex is cannabis i belive my hubby is law and he was howling with laughter, today i discovered vitamin quinone q10 and most ms and me take it for tiredness so i will wait and see. My allergies are strange and a nuisance but i guess if can get the med then door is open for other's. I will keep you updated

 

hazexx

[Christina]

Yes, Sativex is a cannabis spray. I take coq10 and I believe it helps my fatigue levels, and I also take B vits too. I'm trying anything to help the fatigue, but not certain what's helping. I don't think I'm doing any harm with these vits, so I shall carry on for now. I'm seeing my Neuro tomorrow, so I will see what he thinks.

Chris x