This Is MS Multiple Sclerosis Community: Knowledge & Support

[MrsGeorge]

Tomorrow afternoon I am seeing the neuro. I have not had a dx yet, only docs murmuring that MS is likely. I had a whole bunch of tests in early january and tomorrow I am getting the results ( the joys of the NHS & 3 month waits for appointments).

I am now absolutely terrified. After fighting for a year to be taken seriously by doctors I am now praying that they will tell me that it is all in my head and that there is nothing wrong with me. I figure I can happily live in denial for now as I have no dx.

Although MS has been talked about by docs and my symptoms - optic neuritis, followed 6 months later by weakness / uncontrollable limbs on my R side and difficulty walking along with some other stuff does indicate MS. Although I have been living under the word for a while, to be told for certain is not something I think I can cope with. Worse yet, I'm also scared of no dx - it means living in limbo for even longer.

Gah - I hope this makes some sense, I am just trying to sort my feelings out and I don't have anyone else to talk to about it.

[Lyon]

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[Loriyas]

I second what Bob said. Although the diagnosis of MS is scary in itself, not knowing what it is and knowing that something is wrong is worse. If you are diagnosed with MS you will then be able to move forward with decisions on meds, etc. The more educated you become the less scary this will be. Let us know what you find out. We all care about you!
Lori

[MrsGeorge]

Early treatment seems like a joke. I just had a call from the hospital and they have postponed my appointment from tomorrow until the 29th May. It's already been postponed once and now I have to wait another 2 months to find out whether I have MS or something else, all the while I have no fucking support and no help. I am so angry I could cry.

I had the tests on 7th January. I hate the NHS.

[Rudi]

I'm really sorry to hear that. It's simply revolting.

[MattB]

Early treatment seems like a joke. I just had a call from the hospital and they have postponed my appointment from tomorrow until the 29th May. It's already been postponed once and now I have to wait another 2 months to find out whether I have MS or something else, all the while I have no fucking support and no help. I am so angry I could cry.

I had the tests on 7th January. I hate the NHS.

Is it possible for you to see another neurologist somewhere? If they can't get you in within that many months for something so important you should at least try somewhere else. I went to a very good hospital in Philadelphia and they told me all kinds of things they were going to do and I never was never called back. It was so bad that I couldn't even get ahold of anyone to cancel my appointment after I had chosen a different hospital.

[MrsGeorge]

Unfortunately not in England. You are stuck with who you get referred to and because it's a free health service you just have to put up with being messed around. It's unusual for people to go privately and if I were to see a doctor privately it would cost me over $250 just for one appointment.

I did get another call - and though I almost never cry, I was so upset and frustrated last night that I cried at the woman - so she managed to fit me in in 3 weeks. It's now 17th April. It still means it will be over 3 months from having the tests to hearing the results!

[TwistedHelix]

I agree with the others that not knowing is by far the worst condition: you're anxious and fretful without knowing quite what about. A diagnosis at least gives you something to focus on and the ability to draw up a plan of action and consider what options you have. Sometimes it can even come as a relief to finally pin a name to your problems, weird as that may sound.
I know how frustratingly slow the NHS can be, although I fail to see why your GP can't give you the diagnosis – surely he/she has received a letter from your neurologist?
Although it must feel like an eternity for you, I think that any treatment started in the next few months would still count as, " early",
We're all with you!

[MrsGeorge]

Thanks Dom - I will call my GP tomorrow (has to be before 9.30 or they won't call back). Good to know that there are others on here who are in the UK & therefore using the NHS.

Thanks for your responses guys.

[AllyB]

Hey Mrs. G

So sorry that you are being messed around with like this - not only no diagnosis for an eternity, but no 'real' treatment either! Are they at least helping you with any symptoms, even if they can't yet give you DMD's for ms?
I agree with the others - having a proper diagnosis is by far the best thing, sure it is hard to accept in the beginning, but at least you know you are not going crazy and you can get some form of treatment - and better options are around the corner.

I really hope that this gets sorted for you - maybe bugging your GP will answer your questions, or he will be more successful at getting answers for you.
Please let us know how you go - we all feel like we are connected and wish you only good health!

[MrsGeorge]

I just spoke to my GP who read me the letters from the neuro.

Letter 1 said that a dx od MS was probable but tests would have to be carried out to confirm.

Letter 2 said that the MRi showed affected areas of white matter in my brain that was highly indicative of MS.

Obviously my GP can't give me dx but she said that I should expect a dx of MS when I see the doctor on 17th April.

Fuck. It shouldn't be a surprise but it is. I am shaking now.

[Lyon]

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[MrsGeorge]

MG,
I just wanted to clarify that when I mentioned earlier that an MS dx was preferable to not getting a dx, it was with the subject title in mind

Post subject: Impending dx

so the choice I was considering was extended LIMBO vs dx

Not a biggie but I didn't want anyone to think that I necessarily consider an MS diagnosis preferable to any of the things which might mimic MS symptoms.

i got that

My GP seems pretty certain he will.

[TwistedHelix]

Mrs. George,
I'm so sorry to hear that, at least from those letters your GP read, a diagnosis of MS seems fairly likely. Just because you're half expecting something doesn't make it any easier to bear. Give yourself lots of time to come to terms with this and permission to react in any way you need, then arm yourself with as much information as you can, write down all the questions about treatment options you can think of, and bombard the Dr. on the seventeenth!

[MrsGeorge]

Thanks - I would appreciate any suggestions of stuff I should be asking because I still feel totally clueless.