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Big day on Wednesday

I have a big day on Wednesday, i’m feeling really apprehensive, i’m officially back on the rollacoster …i’m seeing a Neurologist out of area. A few months back i asked my Gp to refer me for a second opinion, to a highly recommended neurologist …initially when he wrote back he said he would love to help me but was unable to see me as the authority for that area would not let him, I wrote back asking if there was any one else i could appeal to over that decision and thanked him for his letter and good advice… then out of the blue when i’d forgotten about him i got an appointment for this Wednesday…so i’m scared and pleased at the same time, as i’ve said before i’m not officially diagnosed… so kind of gate crash on here. This is the forum that i’m most at home with and you have all helped me more than you will ever know

So Thank you and hopefully I will get some closure…I’m taking Frazer with me i keep telling myself he doesn’t care what my diagnosis is …just gives me unconditional love and support …but hopefully it might lead to my escape from Limbo land.

Michelle and Frazer xx

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Hi Michelle, Great news that you are seeing him!

All fingers and toes crossed that he gives you a diagnosis. He might want to do more tests first, maybe another MRI. Let us know how it goes.

And Michelle you know you are very much one of the gang! So whatever happens don’t you even think about leaving us!!!

Pat xx Dickie says meow to Frazer xx

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Good luck on Wednesday Michelle…everything crossed for you that you get some answers.

Nina x

good luck for wednesday Michelle.

J x

Hello Michelle.

I hope you can get some definite answers on Wednesday. Before my diagnosis I had all sorts of “helpful” suggestions from people. It was very frustrating, even though I knew what it was. No matter what the outcome, it should not deter you from posting. We get a lot of strength and purpose from each other on this forum.

Best wishes, Steve x.

Good luck for Wednesday, Michelle. Can’t imagine what it is like to be in limboland.

Whatever the outcome please don’t go anywhere, I love your stories.

Mags xx

Thank you so much for your kind words Pat.

I suppose it doesn’t change anything i just wanted some closure…i’m already in a wheelchair so if i don’t find out what is causing my problems i’ll just have to live with it.

Frazer says woof woof to Dickie

Michelle xx

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Thanks Nina, I hope i find out but i’m kind of preparing myself for not having an answer, i’m so tired of living like this the worst thing is the not knowing you start to think that your going mad. The good thing is that the CBT lady has written a report to say that she feels that my problems are not mental but Physical

Michelle x

Thanks Mrs J

love Michelle and Frazer xx

Thanks Steve,

I didn’t realise it would take so long, its almost as if they want to put the blame on you first…I’m fed up of people thinking its stress …yes stress can make the symptoms worse but i know its more than stress causing this.

Thank you for your kind words Steve, the forum has helped such a lot …its been such a lonely road going from being an active person to having a life changing disability, it has been a real journey…i feel as if i’m a completely different person and everything about my life, including my circle of friends has changed forever!

I won’t go anywhere i promise, I need you all too much

Michelle and Frazer xx

Thanks Mags,

Not great being in limboland but lots of us have been there…lets hope i get out soon.

Michelle x

Hi Michelle

Wishing you all the best for Wednesday, and hope you get some clarity.

Whatever the outcome, stay here with us, you are a valued member of “our gang” and sticking together makes us all stronger to deal with this crappy disease.

Let us know how you get on, fingers crossed.

Pam x

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Hi Michelle, from another long term limbolander and gate crasher to this site I will be very keen to hear what he has to say to you. I am on the verge of sending my scans to the states for answers. My symptoms are so like PPMS too,

Good luck on Wednesday

Moyna xxx

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Wishing you the very best of luck on Weds.

After I managed to get referred to London, things got quite exciting for a while. It’s funny, not much has really changed but it was good to meet with different doctors and you see different possibilities.

Hope you get something useful from it even if just a way forward

Sonia x

Hello,

I’ve just come back from my wedding anniversary weekend away, we went to Scarborough it was lovely unfortunately the beach wheelchair didn’t work out…it was a huge beast of a wheelchair!.. most unattractive and old fashioned looking not that i’d have minded but it didn’t have any power, it was manual and it would have needed poor Lee to push it quite a way to the beach, i had just assumed that it was a power chair…I knew i should have asked. but we still had a wonderful time and Frazer enjoyed all of the fuss.

Back to last Wednesday, sadly not much nearer, although maybe he’s right… so far he seems to think its Functional neurological disorder…not what i wanted to hear, but i’m tired and although this seems like non diagnosis (umbrella term for we don’t know what you have) maybe I just have to accept this, he actually said i ticked similar boxes to ms… but he didn’t feel it was ms, sadly when I asked if he thought i’d walk again…I mean proper walking down the street…he said probably not. But I have to say he was lovely and his manner was very kind. He also said that he would get hold of all my mri scans and review them properly and would arrange for me to have a muscle test…i think this is where they stick pins in you and you say ouch! if you feel it …oh joy! Also he will write to my GP and Neuro physiotherapist to give advice on exercises that may help.

Thanks everyone for your kind words they really mean a lot…I just waned to belong somewhere and it has really helped being on this forum.

Love Michelle and Frazer xx

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So pleased you had a good time…such a shame about the beach chair.

I’m sorry your visit to the nuero wasn’t more satisfactory but make no mistake whatever the outcome you will always belong here with us…we would all miss you and Frazer!

Take care,

Nina X

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sorry you didnt get any answers Michelle, but you will always belong on here you are part of ‘the gang’ now and we wont let you leave ,so there lol,

i know i can speak for the others too.

sounds like scarboro was fun, shame about the beach w/c though.

J x

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Hi Michelle

Glad you enjoyed Scarborough, shame about the beach wheelchair, I must admit I thought it would be electric, trying to push one on sand would be so difficult.

Sorry your appointment didn’t give you answers as such, but I am glad you’re staying here with us, we are like a big family, all helping one another.

Take care, love to Fraser

Pam x

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Thank you for your kind words Pam, I have felt a bit downhearted about it it feels as if my life has be turned on its head in the last 3 years… I know that nothing has changed, i just wish i had a proper diagnosis Fnd is so vague.

I’m sorry for moaning its not the end of the world Frazer doesn’t care what its called.

Michelle x

Thanks Mrs J, i always feel welcome here…your kind words really help.

Michelle x