PLEASE HELP I IAM SO SCARED

peekaboo · Post by **peekaboo** » Tue Jun 30, 2009 5:44 pm

Wishing you well in your dx ventures H

catfreak · Post by **catfreak** » Tue Jun 30, 2009 6:33 pm

Hey Jules,

I am doing pretty good. My Mom is still in and out of the hospital these days. She had her little toe amputated 3 weeks ago and then went back into hospital about 10 days ago for infection stayed 3 days and now having to go everyday for IV (yuk) Antibiotics for 21 days for staff infection.

She may still lose her foot and leg...

I am working 50 hours a week. This humid Mississippi heat is killing me, it makes me so tired. But on the upside my last MRI showed no changes and the Tysabri is going good.

I have had a lot of ear problems since MS. Had to have tubes put in December 2007.

I am anxious to hear your test results.

Hugs!

Cat

71jules · Post by **71jules** » Thu Jul 02, 2009 10:30 pm

Hi everyone just a last post to say thank you and good bye. I went to get a second opinion today and was told prior to the little tests they do that nobody denies the symptoms or that I could have MS to after the little tests I want you to leave here, GET A JOB AND GET A LIFE! Yes that's what I was told. I cried and cried and cried and then went home and cancelled my appointment with the hospital to get the results from an EEG. I can't take this anymore, with all my symptoms and the stress on me and my family to be spoken to and treated like that is to say the least disgusting and hurtful and not called for.
I will suffer now with the symptoms and one day I only hope to find out what it is that is causing it. MS or not! I would like to thank you all from the bottom of my heart for your ongoing support, friendship and understanding. I would like to remain in contact with catfreak and needled in particular and anyone else that would like to I would love to.
I wish you all the very best of health and hope and send my hugs out to all of you.
You will be forever in my thoughts and when I hear about an oral treatment I will raise a glass for you all.
Take care now and forever.
Hugs
Jules

71jules · Post by **71jules** » Thu Aug 06, 2009 1:03 am

Hi,just checking in to see how you all are and let you how I have been.
Firstly I hope you are all well as could be expected and I hope that oral treatment is closer for you all.

I have been going through a tough time, emotionally with the thought of me having a type of Ataxia disease with no cure or treatment.
For me that new's is devastating but I still know an MRI down the line may show lesions and it may still turn out to be MS.
My young family is finding it tough also knowing or believing that I will never heal but most probably will progress with the chance of ending up in a wheel chair.
They don't know much about this disease here in Australia and after doing research on the net it seems USA and UK know more and have done more research on it and patients can access help similar to what they offer to MS sufferers her in Australia.
The only clear way apparently of diagnosis is brain biopsy.
I will keep you all updated with any further details and once again, I do think of you all often.

Hugs to you all.

Jules

Needled · Post by **Needled** » Thu Aug 06, 2009 5:59 am

Hey Jules, Per my earlier PM, Islandgirl mentioned the following near the bottom on the second page of a recent thread http://www.thisisms.com/ftopict-7626.html:

Gluten Ataxia is a strong possibility since the lesions mimic MS lesions and symptoms and it can cause the usual fatigue symptoms. There is a specialist who has written a book on it who is with Kaiser Perminenta in Portland Or. ... if anyone wants to know more about Gluten Ataxia and this specialist google (kiaser celiac multiple sclerosis).

I know nothing at all about it other than what she said, but it caught my attention and you came to mind, so I thought I’d send it your way. Maybe you could touch base with her, or maybe someone else on the board knows more about it? I hope it has some relevance for you. Fingers crossed!

71jules · Post by **71jules** » Fri Aug 07, 2009 5:24 am

Hi Needled and thank you so much for this post and the pm. I did look into that but it didn't seem to add up to my symptoms.
I appreciate your kind help, thank you and the well wishes are so appreciated.
Lynda Carol you have made me decide to seek another opinion yet again and seek another MRI in the next year after reading one of your posts, thank you........

Take care, have a great weekend hope to catch you on facebook.

Hugs
Jules

peekaboo · Post by **peekaboo** » Fri Aug 07, 2009 12:39 pm

Jules -

I just tried to search for you on facebook and could not find a Jules that could be you....I will keep trying (do you know that there is a fashion line named Jules, a musician and an actor?)

catfreak · Post by **catfreak** » Fri Aug 07, 2009 3:35 pm

Holly,

I will PM you her name.

Cat

71jules · Post by **71jules** » Tue Sep 15, 2009 12:42 am

Hi all and I have missed you all and I hope you are doing as well as could be expected.
Just a bit of an update, I don't know where I left off but I am still in limbo land.
I am at this moment suffering numb lips alot, shock like pain in areas of my body but mainly in my left side of my stomach and weakness still in my right arm in particular.
My balance is still affected and I need help walking up any incline at all and still need my food cut up due to muscle weakness.
I started making a coffee yesterday and it wasn't until four hours later I remembered I was making it.
Another upsetting thing to me is that trouble I have with comprehending conversation and as I am typing this it feels like a bug is crawling under my skin, ewww and grrrr..........

I did try and seek a new appointment with a highly rec. specialist but he isn't taking new patients.

Still unsure of when I will finally get a definite diagnosis and until then I do suffer with my symptoms and they won't hand out drugs for any of them. I am going back to the Neuro in January but don't think I can wait that long, not easy getting in as you would all probably know.
It is spring in Australia now so the weather is heating up and now the symptoms are starting to increase. The good news is we have a pool now so at least on warm afternoons I can cool off in the pool and have fun with my family.
I will back in contact soon and until then you know my saying, hugs to you all.

71jules · Post by **71jules** » Fri Sep 18, 2009 5:31 pm

Hi again just another update, I phoned the hospital yesterday to see if I can go back to the Neuro earlier.
I now waiting for a phone call back to do that or to be referred to areas such as occupational therapists, speech and physio to help with the symptoms because I can't wait any longer for help.
I may be getting a referral to an MS clinic to see one of their Neuro's.

Hugs
Jules

Needled · Post by **Needled** » Sat Sep 19, 2009 4:56 am

Way to go Jules. Keep at it until you find something that helps you. You have to knock, or pound, on their door -- no one's going to come to you. So go get 'em!!

71jules · Post by **71jules** » Mon Sep 21, 2009 4:03 am

Absolutely Needled, I will and I am awaiting a phone call, will let you know how it all goes.
Chat soon I hope on facebook too.
Hugs
Jules

71jules · Post by **71jules** » Tue Sep 29, 2009 2:46 pm

Hi guys and girls again I have a question and would love to know if anyone has anything to say to help me out please?
Yesterday I was sitting out the back having lunch with our 12 year daughter and I had a packet of lollies, I took out two and sat them on the table and one was cherry and one was orange. I said to my daughter you don't like the cherry do you so I will have that one and you can have the orange. I went to slide the orange to her and the cherry to me but do think I could work that out? I am not colour blind but the brain didn't understand what I wanted to do and it took the lollies to go back and forth to finally after about a forth attempt get the cherry to me and orange to my daughter,

and

I was so frustrated and distressed that such an easy thing to do turned into a chore. I was unable to comprehend a sentence too that my son was saying and it took about five to six times to finally understand.
I don't know whether to mention this to the Neuro but feel I should.
Has anyone had a similar experience or any ideas at all?
Thanking you so much.
Jules

scorpion · Post by **scorpion** » Tue Sep 29, 2009 4:15 pm

Hey Jules,

I would certainly mention it to your neuro. Maybe it is a piece of the puzzle and maybe not but let your neuro decide. It could have been anything from a symptom of MS to what my 16 year old daughter so elegantly calls a "brain fart". Good luck Jules!!!!

71jules · Post by **71jules** » Tue Sep 29, 2009 10:00 pm

Thank you for that, I think I will mention it as I don't know what the brain was doing to not understand what I wanted to do.
My brain is playing up more and the symptoms have increased with the warmer weather we are now getting here in Oz.

This Is MS Multiple Sclerosis Knowledge & Support Community

PLEASE HELP I IAM SO SCARED

Goodbye and Thank you

question if I may?