PLEASE HELP I IAM SO SCARED

[71jules]

Hi Scotty thank you for that post.

I know where you are coming from and as I write this I feel so weird and light headed and am having trouble feeling my right arm and hand today and understanding language being spoken to me by a friend who came to have quality time and show she cares. Hey lol full stops and commas and proper grammar who cares this time round, too hard to think.

Have you been given an indicator of when you will get your results?

I was on the phone to the patient liason office this morning relaying my concerns about my symptoms being far more severe than my last visit. She is looking into getting me a far quicker appointment that early June, OMG!.

To be honest with everyone here on this site and with myself, I truly believe I have multiple symptoms of MS but the part I think I am finding so so so so much harder is the fact of the unknown of progression if it is and the Needles you have to have to prevent symptoms.
If it was a diagnosis and finally knowing ok this is what has been wrong with me and hey, Jules, tablets will stop the symptoms and you will not deteriorate but as long as you take these tablets things will be kept at bay, I could probably handle hearing that and hey, might even be relieved.

Scotty tomorrow, I promise you that you will be in my thoughts and I sincerley hope you, like me receive some news and answers soon. Enough is enough.... RBH, for me is it the PA for you?

You stay strong too and keep your chin up and I know what you mean about family but sitting here now oh, I feel so not right in the head, you know what I mean, lol?

Hugs for tomorrow.

Jules

[scotty]

Hi Jules,
MRI done, i got some sedation but still had some tremmors so they had to do parts of it again. I got the tests done without contrast first and then with contrast. My next concern is the quality of the MRI machine it was only a 1.5t and so i am not sure if that will definately show anything as i believe that 3t is recognised as being twice as good and presume that is what you would have had your test done on.

Scotty

[scotty]

Hi Jules,
I have just been to the Drs and the results were through already. Guess what__________Clear. That is good news but i don't know where to go from here.

Talk soon,
Scotty.

[scorpion]

Go to this link Jules. It explains how you can have a negative mri but still have ms. Keep it mind that having a negative mri with ms is very rare.
medhelp.org/health_pages/Multiple Sclerosis/.../show/161?cid=36

[71jules]

Hi guys,

Firstly Scotty, I cannot believe you have your results already. It showed clear, how do you feel about that? I would imagine you might feel a bit like this . I had tears in my eyes when I read your results and was relieved for you but am also wondering then what is wrong with you?
Don't give up Scotty on seeking help as something is wrong and they will find it eventually.
Please know I am here for you to vent or lean on emotionally as I now await my results.

I had a tough time with my emotions on Thursday night and felt like I was going silly. I tried to ring a councillor service but couldn't get onto one.
I eventually the next morning got onto a councillor at the MS Society.
Wow and hour and a half later, after going through all my symptoms and him genlty saying he is no medical practioner but he believe I do have it from the amount of symptoms I suppose and if I do he would think they would find multiple lesions and that I may have had it for around 10 years.
He wasn't trying to frighten me but I think maybe prepare me mentally for some news I may not like to hear. Hey if it's clear then I know a spinal tap will be done.
My health is getting worse and quite quickly, symptoms becoming hard to deal with.

Thanks scorpian for the link, I went on and had a look and think I can now understand how it might be missed on mri.

Well soldier on and on and I will try and keep focused on some light at the end of the tunnel which is so dark at the moment.

Thanking you guys so much and Scotty a big hug to you I didn't know quite what to say to you.
Please let me know how you are going.

In my thoughts.

Hugs

Jules

[scorpion]

Jules,

I know the waiting game sucks but after I received my mri I said to myself "you either have it or you don't " and I went back to living. Please refer to Lyon's comment to you after your first post. He is absolutely correct. Secondly once you start looking at the wonderful research that is being done(stem cells, campath, revimmune, oral drugs!!!) you will see that it MIGHT not be long until researchers learn how to stop or even repair some of the damage caused by MS.So I guess what I am saying is keep living life no matter what the outcome. If you don't feel like moving much there are things that you can do that will not take much energy(relaxing on the porch, chatting with family an neighbors, etc.) No matter the outcome you still have a long and bright future Jules.

[71jules]

Hi Scorpian, thank you for that but honestly I am finding this too tough.
I have on hand two 24 hour numbers for over the phone councilling if I need it.
I do try very hard to not let this beat me and try and keep positive not easy though.

I thank you again for your caring thoughts and advice.

Jules

[scotty]

Hi Jules,
Thanks so much for your thoughts and concerns, they are very much appreciated but don't worry about me you have enough of your own to worry about. I am not entirely convinced it is not MS but i hope like hell it isn't. At least i can live a life of denial for a bit longer. I was amazed that the report was through to my GP within hrs of the MRI being done.

I read and have obtained a copy of the letter from my first Neuro, she really does hold herself wide open to negligence should something medical ever be diagnosed. The letter openly stated that "there was nothing medically wrong with this man and he is being refered back to you (GP) and a Psychiatrist as he has a Conversion Disorder." I had a look on the net and apparently a Conversion Disorder will often mimic MS, but it is attention seeking or results from something in the suppressed memory. She had better hope like hell she is right as i will be reporting her to the medical board and going to the media otherwise.

Talk soon,
Scotty.

[71jules]

Dear Scotty, I don't know what to say, shocked that someone would insinuate something like that when it seems quite clear that you would not be able to put on a tremor or pain or any other symptoms you have had just because you feel like a bit of attention. Sounds like you have a supportive wife I think you mentioned in the past. I don't know where doctors get off making comments like that just because they feel inferior that they have not been able to diagnose you.
Scotty, as I mentioned to the MS Society councillor, after having three or so symptoms it was me who thought that may be MS causing those. I left it years until so many more symptoms appeared and some very distressing before seeking help.
Honestly if you were after a bit of attention wouldn't it be a lot quicker and easier to strip down and go to Melbourne and run across the MCG? : hope that made you smile.....
In the mail today I am expecting the registration form and info from the MS Society and that is how much the guy there thought I had MS.
Deep down I certainly do, the symptoms are definitely mimicking that of MS. Doesn't mean I am ready to hear that I do, oh no, not me and I can't stand the thought of hearing those words uttered under the breath of a Dr that has no bed side manner.
Waiting and waiting and every time the phone rings the stomach drops.
Scotty please take care and please stay in touch and I will be happy to give you my personal email address if that's what you would like to be able to to that.
Let me know.
You are in my thoughts and I will let you know how I go but I know a spinal tap is the next step if the MRI comes back clear.
Stay strong and don't lose hope of getting a diagnosis of something that will help you carry on with your life in the best possible way.
Hugs
Jules

[71jules]

Hi again everyone, the hospital rang today and an appointment has been made for tuesday May 6th at 2.15pm AEST. I had requested a change of Neuro but after the head of Neuro looking at my file he felt I should stick with the one I met, she treats MS patients. I asked if there was a back door escape if I receive bad news and break down so my hubbie and I can leave without confronting all the waiting patients.
Yes there is and at this stage I feel so scared we may end up using it.
Depending on the outcome guys I may not be one for a little while till we get our head around it a little.
I have the MS Society info here loaded with info and registration form and support is there ready to go which I will be needing a lot of.
Wish me luck please guys but I know luck won't change the outcome.
Chat again soon.
Scotty I will pm you now my private email address. Catfreak will send an email to you tomorrow.
Hugs everyone.

Jules

[71jules]

What to do now.
Does white matter or white and grey matter have anything to do with MS? Change in that area I wonder could that lead to a diagnosis down the line?
I will keep you all posted and hopefully I will get answers to my symptoms one day.

Hugs
Jules

[chrishasms]

So do you have your results yet?

[scorpion]

Look in Jules's other thread Chris.

[chrishasms]

I did but my dumb butt didn't notice.

[71jules]

Hi again, just an update.

After being on Diamox for only 7 days I ended up with a severe tremor and 8 bruises which were seen as severe reaction and possible sign of something severe being wrong. Poor me, needle phobic ended up needing urgent blood test to check platelets and coag.
Stopped medication at 7 days.

I am looking at getting second opinion from another Neuro and have two
on the go.

Hope you guys are all as well as can be expected.

Hugs

Jules