[Bort]

Originally Posted by NurseNancy

hi carolyn and welcome to NT,
sure you can stick out with us.

i'm sorry you're so sick right now but hope your drs can help you.
please keep us posted.

Thankyou

I'm back home now. The 2 hour long MRI (can you say torture? Especially with the flipping facemask clip digging into the back of my head!) didn't show anything, but the lesions I have now took literally *years* to show up on scans - I don't know if that's specific to Devic's or I just have a stupid CNS, but either way I'm used to long waits for answers. My walking improved enough that I got discharged but I am still very easily fatigued atm. I'm going to see a highly regarded neuro in my city (Melbourne), hopefully she has some answers. I'm tired of being a medical mystery.

[Tammey]

Welcome Lisa! You will get a lot great advice and support here! Great people with lots of experience living with neuro stuff, getting help and coping with it all. I have only been in the forum a few days, and feel great about the lovely people here!

Wishing you health, happiness, and peace,



Tammey

[Bort]

Originally Posted by SallyC

Welcome to NeuroTalk Caroline. So sorry for the Illness that brings you here, but glad you joined us.

I know nothing about Devics except that it sure sounds like MS to me. So Welcome home..

AFAIK it wasn't recognised as a separate condition until quite recently - it used to be called optico-spinal MS. It presents pretty much the same but the attacks happen preferentially in the spinal cord and optic nerve, usually with long tract lesions. So it's kind of better and worse at the same time, if that makes sense.

[SallyC]

Welcome to NeuroTalk MS forum Lisa. Please come in and join us. We are discussing MS and depression inside. We understand.

[Banburycross]

[QUOTE=LisaLisa37;933418]Hello all. I am new to this thread and looking for advice and support for what I have been going through. After 5 years of symptoms of ms I am still without a dx but every time i go in with a new symptom am told it sounds like ms. At this point I am not very functional at all and with every attack I get new symptoms and am desperate for help. The depression has started to get pretty bad over the past two


Just wanted to say hi. I'm playing the waiting game.. I think one of the hardest things is not knowing what to do.or at leat I feel better if I have some plan of action. I actually snapped over a month ago :-) froze mentally, my old acupuncturist got me a little stable. So I can only offer to be here if you just need a sympathetic shoulder. I have new symptoms popping up all the time, some last only few mos, some progressive. My neuros suggested I play lots of video games.. So if u like we could hook up on some computer games. Kinda kills boredom and strengthen cognitive skills. Hang in there, most people think waiting is the hardest part. Have they ruled anything out yet for you?
Warm regards, katherine

[Erika]

Hello Banburycross,

Welcome to our community.

That waiting game has got to be one of the hardest things to endure; especially when symptoms are ongoing and it seems that nothing is being done about it.

For what it's worth, many excellent diagnosticians take an opposite approach to the urgency of "Don't just stand there...do something!" and instead think, "Don't just do something...stand there." This means that that they are evaluating the whole picture rather than jumping at the first or most obvious symptom; and that often ends up being the best approach in that it may avoid an incorrect or ineffective treatment plan.

Please do keep us up to date on how things are going. Sometimes just sharing what we are going through with others who truly do understand the frustration that this disease can cause is a tremendous help in itself .

With love, Erika

[LisaLisa37]

[QUOTE=Banburycross;933634]

Originally Posted by LisaLisa37

Hello all. I am new to this thread and looking for advice and support for what I have been going through. After 5 years of symptoms of ms I am still without a dx but every time i go in with a new symptom am told it sounds like ms. At this point I am not very functional at all and with every attack I get new symptoms and am desperate for help. The depression has started to get pretty bad over the past two


Just wanted to say hi. I'm playing the waiting game.. I think one of the hardest things is not knowing what to do.or at leat I feel better if I have some plan of action. I actually snapped over a month ago :-) froze mentally, my old acupuncturist got me a little stable. So I can only offer to be here if you just need a sympathetic shoulder. I have new symptoms popping up all the time, some last only few mos, some progressive. My neuros suggested I play lots of video games.. So if u like we could hook up on some computer games. Kinda kills boredom and strengthen cognitive skills. Hang in there, most people think waiting is the hardest part. Have they ruled anything out yet for you?
Warm regards, katherine

Hello Katherine. I too have no plan of action at this point and think that is making depression worse. I have always been pretty active and now cannot even do some simple yoga. I have a list of new symptoms that have come over the last 6 months- more than any over the last 3 (severe joint & nerve pain, numbness & weakness of legs, burning hands & feet, coordination/balance issues, blurry vision, fatigue, tremors of hands & head, muscle spasms & cramping). I cannot work for the past 3 years due to continued falls, i have not driven in 8 months, and most of my household chores are now being done by others. My drs are pretty much just treating symptoms with medication (gabapentin, cymbalta, baclofen, & low dose of oxycodone) and redoing tests already done (lumbar mri to check for pinched nerve twice, vision test twice, blood test checking for Lyme, hepatitis, & HIV, EEG for sleep issues, and next week I get to have my second emg even though the first showed nothing abnormal) My new neuro said I don't have ms based on my brain mri from 5 years ago when my vision and balance issues started. I have an appt with my primary doc next week also and am planning on asking to be taken off meds. They are not helping me- seems pointless. I'm desperate for help but at the same time am so frustrated with it all I don't want to go back. Every time a new symptom comes I have started going to urgent care clinic (3 times in past month) and each dr looked over letter I bring with all my symptoms, diagnosis, tests done & what I do on my own and all said they would speak with my primary about testing for ms so I guess we will see next week! Sorry for the long-winded response! On a positive note I do play online games- I love any puzzle, word or trivia games. What do you play?

Warmest Regards,
Lisa

[Tammey]

Hi Lisa! Do you have a large hospital (like a university medical center)in your area? They often have neuro clinics that are more aggressive in diagnosis and treatment, and have practitioners who specialize in diagnosing and treating neuro disorders. Radiologists are trained in interpretation of MRI, but radiologists who work with neuro disorders have experience and special training in the types of MRI needed to visualize certain disorders, (type of contrast, type of scan, etc) and subtle changes that may indicate a lesion that a less experienced practitioner may miss.

Most of the time these clinics will make you an appointment without needing a referrral. All they ask is that you bring any previos MRI's, and possibly lab results. (in addition to your standard insurance and demographic info). After your first visit, they will begin scheduling the right tests, diagnose what is happening to you, and begin treatment.

I became frustrated with my local neuro and endocrinologist when I was having symptoms of a pituitary disorder, and they wanted to take me off the only medication that actually helped me. I made an appointment with the Department Director of a large Neuro clinic, and the first thing he said to me when he saw my MRI's was: "I can't use these, they are doing the wrong scan". Once the correct scan was ordered, the doc was able to diagnose my issue, and endocrinology was able to sort out the hormonal symptoms. My treatment was very successful.

Please review the tread about depression and MS. I think a lot of the info can relate to neuro issues in general.

Good luck, and keep on advocating for yourself!

Tammey

[Tammey]

My neuros suggested I play lots of video games..

I found this very interesting...With my last bout of symptoms I had several days where I didn't feel like I could process or retain information. I felt like my IQ dropped 30 points, and I just couldn't think.

So...I started playing my computer puzzle games. I don't know if it helped, but at least I felt like I could concentrate on something. I haven't had cognitive issues since I started feeling better physically.

[yohami]

Hello. My name is Miami and I have Spinal Myoclonus. My neck was broken after a semi hit my driver side door, and snapped my neck. I was paralyzed for 2 months before they relized what was wrong and now my spine is damaged. Still learning his, since I just discovered it last week, but have been suffering since May 8, 2012. I am grateful I am doing well.