Am I over-reacting? (recent MS diagnosis)

AilsOD

To cut a long story short I had a very expensive lumbar puncture (I don't have health insurance) 3 weeks ago. Last Thursday I got a call from the hospital where my neurologist practices asking me questions about intravenous steroids. My response was what are you on about? It was the first thing I heard since the puncture. The woman on the phone also had an adverse reaction when I told her I don't have health insurance! Then after a call to neurologists office and a 5 hour wait my neurologist calls me back. He starts rambling on about treatments and what not. When I asked treatments for what he bluntly stated that the lumbar puncture showed MS. He rambled on again for a while. I have no earthly idea what he said, I was standing outside my local community center as I was meant to be at Christmas choir rehearsals I couldn't take in a word. Any questions then he says. I said not at the moment I'm kind of in shock. To which he replied "What shock you knew this was coming!" Ammm no I didn't really. At my first consultation he said I think you have MS then proceeded to say my symptoms could be down to migraine or a virus or sinus trouble. At no point did he state that the purpose of the lumbar puncture was to definitively prove MS. I was of the opinion (probably naively) that it was to rule it out if anything.

He then told me that he had no appointments in the hospital I had been treated in (Galway) and that I could come to either Sligo or Ennis to see him. The following day I cancelled the appointment he made for me in Ennis this coming Monday. As I told him I have no intention of travelling 154km (round trip) in the dark I need time to get my head around this. I want to talk to my GP and see what my options are.

The above is a very abridged version of the last 3 days but my question is this. Is it standard practice to be so unprofessional when handing down such a diagnosis and is the absolute outrage I feel an over reaction? Might I also add that when I called my GP he had no idea of my diagnosis either. Is it silly of me to be annoyed (at best) over the whole episode?

byhookorbycrook

Sorry to hear you are joining our ranks.Just to let you know that there is no def test for MS, just a number of indicators.

Seems as if it could have been handled better.I do know that my initial referral for an MRI was mentioned as possible MS and I convinced myself I didn't have it under any circumstances. Could this have happened in your case?As to 140 km round trip, I do a 600km round trip once a month to get my MS treatment.If it means you getting treatment sooner rather than later, I think you should go for it.

I'd also suggest you get health insurance asap. You'll have to do a wait period, but if ,down the line, you need certain (expensive ) treatments that are limited on the public system,you'll be covered. (Mine costs €2,500 a month :eek::eek: )

AilsOD

Heya thanks for the response. Oh no, I knew it was MS for at least the last 18 months (in my heart of hearts) and the shock only lasted about 10 mins but they were 10 mins that he was rambling on about treatment. I'm only 29, my symptoms are very mild, the only reason any investigation took place is I got double vision. They couldn't diagnose it from my MRI so I had to do the puncture. Can I get health insurance now that I have a diagnosis? I'm so feckin green! But I'm determined to research everything and be armed to the teeth! I think I was and probably still am more shocked at his attitude and the lack of organisation his secretary has! Another part of the saga but unimportant in the grand scheme of things. This guy isn't feckin cheap. I'm unemployed and I have a medical card and I scraped money together so far but that cannot continue much longer.

byhookorbycrook

Yes, you can join , but will be prevented from using it for MS related stuff until the waiting period is over. I know in my case, I didn't need my current treatment until about 8 yrs in ,but at least it was then covered. People on the public system mightn't get it at all. it

My neuro is highly efficient but some people feel she's a bit blunt(another patient was highly indignant to be told, "Yes it's MS now get on with your life"-I don't see any issue with this, but she was really offended!)

I would take the appt and see what treatment you can be put on. When I was diagnosed you had to have at least two relapses to get put on a treatment where nowaday I think the thinking is "the sooner the better" to stop as much damage as they can.

Be careful of googlng, you can freak yourself out very easily!

AilsOD

Yeah I think I already have freaked myself out a bit. I was actually grand the first day or two but now, because the neuro has been so pushy about paying for intravenous steroids (another part of the saga, too long to go into) he has me terrified! It feels like whatever they found in the puncture is very bad and needs immediate treatment even though I've had no changes in symptoms in 6 months now and before this there didn't seem to be any rush on any of the health professionals. And yes, I know he has offered me an appt on Monday I still feel it's not good enough that I have to travel so far with such little information. I don't know enough to make any decisions. Plus he's not Irish and while his English is good it is broken I'm not sure if I can take in what he says at such an early stage. Double vision is the most disorientating thing and while I have lenses that correct it most of the time it can get worse at any time and even the glasses don't work. Driving in the dark is risky. It's more the darkness and the unpredictable weather that bothers me than the distance. I actually have an appt publicly with a neuro in the next few weeks cos my GP put in for it months ago so I'm going to keep that.

Thank you so much for the advice it is much appreciated

fergal.b

If your neuro say's you have MS can you now apply for a long term illness card http://www.hse.ie/eng/services/Find_a_Service/entitlements/Long_Term_Illness/
I know travailing to these appointments can be a nightmare, we are lucky as Beaumont is only up the road for us but I know a few people that have to leave there homes at 5am to make a 2 o'clock appointment where they could be waiting another few hours before the return trip and for someone with MS this is no joke :mad:
Hopefully things will sort themselves out for you soon and some of the worry can be lifted.

Best of luck.



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byhookorbycrook

It seems you have optic neuritis and steroids help you to pull out of a relapse. It has been proven that the earlier you start a treatment the better, so go for it. While the treatments don't cure you ,they slow MS down and hopefully we are not too far away from a cure.

ETA Make sure you inform your auto insurance of your diagnosis and that the neuro gives you a letter to say you a fit to drive. Insurance companies will use any loophole like this to wriggle out of things.

AilsOD

Thank you both so much for the advice it really is appreciated. While I'm not entirely clueless about MS, I have done some research I'm still dealing in a lot of what ifs. I had every intention of taking my time with this and finding things out and making informed decisions and my gut tells me to stick with that strategy and not be pushed into anything. I hadn't thought about the car insurance thing thanks a mil will find out what I need to do there first thing Monday.

ElleEm

OP, I had a similar experience upon diagnosis too. I had an MRI and lumbar puncture and was told it "might" be MS. This was genuinely out of the blue after a few days of symptoms. I asked for a sick note for my job and the doctor wrote MS on it. I asked was there a mistake, but the doctor bluntly told me I had MS.

It will take a while to get your head around it, but please get to your neuro appointment asap. Your GP can only really prescribe steroids (and should only do so in consultation with your neuro). The neurologist and MS nurse are the ones who know the most about treatment options. I am with Hook on this one, the earlier you are on meds, the better. I inject once a day.

And as Fergal says, the LTI (Long Term Illness) scheme is great and will give you your meds for free.

The_Conductor

OP- apply for the long term illness card, through your GP, immediately.
As per the above suggestions- I'd seriously recommend getting health insurance asap too. There is a waiting period for any pre-existing medical conditions of 5 years- aka, you will not be able to avail of health insurance for any MS related treatments for 5 years- but you are covered for non-related illness.

pbarr

Just a question about the lti card, is there any point applying for one when you have a medical card as that pays for the meds anyway.

byhookorbycrook

LTI covers absolutely everything ,even down to cotton wool for the injection sites ,once it is written into the book and approved. I'd apply for it anyhow.

mamakitten

pbarr wrote: »

Just a question about the lti card, is there any point applying for one when you have a medical card as that pays for the meds anyway.

My partner has MS and has a medical card because of that. When he tried to apply for LTI he was told he couldnt, you can only have one or the other but that the medical card was better as it covered hospital care etc.

AilsOD

pbarr wrote: »

Just a question about the lti card, is there any point applying for one when you have a medical card as that pays for the meds anyway.

My GP just told me that I may as well apply for it but they are doing away with it shortly and all long term illness people will be getting medical cards. If I had to choose I'd take the med card at least I don't have to pay to see my GP or go to Westdoc. At least now my mind has been put at ease, he answered a lot of my questions and I'm feeling a lot more positive.

trishawisha

Hi AilsOD, Firstly sorry about your diagnosis. I also have no med insurance and went to a private neurologist at the start for diagnosis. Luckily I didn't need a LP so I don't know even how much that would have cost.
As soon as my public appointment with neurologist came I was delighted and said goodbye to the big bills for consultations.
I don't get why he's pushing you to get intravenous steroids, I had a relapse during the Summer and took oral steroids and they sorted out the issue within 3 days. My GP prescribed these to me after consulting with neuro, and was told I would be going into hospital asap if they didnt work.
I also have a medical card and have been told no need to apply for LTI book as Med card covers everything.
Im also 29, diagnosed 2011.
I think everyone deserves to be given life changing diagnosis with some compassion and I dont think you're over reacting at all.

AilsOD

Hi Trisha thanks so much for your reply on this. You've pretty much said what I was thinking myself right there. My GP confirmed it this evening. He said we needed to go private to get the tests done and the diagnosis made but now we can revert to the public system and it will all be just fine treatment wise. Ok, so I know this is something I'm going to have to live with and there will be hard times and hurdles but I'm so ready for all that. He said I should just write a thank you to the neuro cos he actually has in fairness done every test possible to rule MS out and it is literally the only thing he can diagnose, but that we are now going to use the resources available to us since I don't have insurance and I already have a medical card. My initial reaction was are you kidding me I know what I'd like to write to him but in fairness to the neuro he was just trying to get the ball rolling. He never meant for me to get that phone call which rather forced him into revealing all over the phone. However I still think he should have called me in and went through it all before trying to organise treatments for me. Anyway, onwards and upwards, thanks to everyone for their help and advice

ash23

AilsOD, sorry to hear about your diagnosis and the manner in which it was handled. I can understand how upset you were.

I am still waiting on an official diagnosis. I had an MRI but, as my GP put it, I fell between two stools when it came to getting the results.
The eye clinic fobbed me off to the neurologist but because I wasn't actually under the care of a neurologist, my results were left in an inbox somewhere.

I was waiting almost 6 weeks and it was only because I had a relapse and went to my GP, who got the MRI report, that I even have a follow up appointment with the neurologist.

The MRI showed plaques so my GP has said all signs point to MS. But I'm back to the neuro in UHG next week for follow up.

To be fair, my GP had braced me for the result so I was somewhat expecting there to be something on the MRI. Whereas the neurologist I had seen in UHG had said MS was a possibility but so were a host of other things. The GP was more negative but that was probably better than giving me hope I think.

But all the same, when the GP rang and said there was demyelination, I felt like it was a kick in the stomach. I was in work and had to go home because I was in bits.

Now I am just anxious to get the ball rolling with whatever it is I have.

Its awful that you have to travel to Ennis or Sligo for treatment. Can you not ask to be referred to a public neuro? I know the wait is a bit longer but I got my appointment for a month after my GP called. (ETA - sorry, I just saw your last post and this is being done)

With regard to the IV steroids, I had to have them in September for optic neuritis. I saw a neuro in UHG who arranged for me to have them in Mayo General.
For optic neuritis, oral steroids are not recommended as for some reason, they tend to make a relapse more likely.
I went in as a day patient, 3 days in a row, 2 hours each time and had them done and they sped up the recovery. My sight is pretty much completely back to normal now.

AilsOD

ash23 wrote: »

With regard to the IV steroids, I had to have them in September for optic neuritis. I saw a neuro in UHG who arranged for me to have them in Mayo General.
For optic neuritis, oral steroids are not recommended as for some reason, they tend to make a relapse more likely.
I went in as a day patient, 3 days in a row, 2 hours each time and had them done and they sped up the recovery. My sight is pretty much completely back to normal now.

Hi Ash, thanks for that it was going to be my next mission to see if anyone got treatment for optic neuritis. My GP said that IV steroids is probably how it would go with the treatment but he said it wouldn't guarantee to fix my eyes. A chance though is all I need! I was talking to someone today who has been there with his wife (who I'll be talking to tomorrow she's working today) he told me all about getting the IV steroids as a day patient.

I'm totally over the manner of how I got the news last Thurs but that neuro isn't getting any more money outta me! He is probably amazing and one of the best in his field but I can't afford him. As the GP said keep him onside just in case but otherwise I'm done with him.

I hope you can get your diagnosis soon by all accounts it makes things a heck of a lot easier. All I've got so far is that phone call last Thurs but my GP is expecting a letter so once it's in writing we can get more balls rolling. I have an appt in UCHG on Jan 2nd that my old GP put in for months ago so I'm ahead of myself says my GP. He told me to go off and enjoy the xmas and things will get sorted in Jan

ash23

As far as I know, the IV steroids don't affect the outcome of the recovery, they just speed it up. After a year with or without IV steroids, the recovery from ON is about the same. But people tend to recover faster with the IV steroids.

I was lucky in that my eyesight went back to normal and there was no damage to my optic nerve, but that would have been the same with or without the steroids.

I'm not sure how many neuros are in UCHG but the one I am seeing is really lovely. I've only seen him once and that was in the eye clinic when he was called down to see me, but my GP got me referred to him again.

Best of luck and I hope you can get your eyesight sorted. It's pretty scary to have!