[Jomar]

Originally Posted by slantz883

I ave a couple questions to ask but can't seem to post them.

slantz883
Here is the New Thread link for the MS forum, is that what you are looking for?
http://neurotalk.psychcentral.com/ne...newthread&f=17
You can start your own thread for more questions and discussion of your symptoms.

[sadsister]

Thank you Koala77 for the link!
Hi there, for 4 years we thought we were alone in this thing, up until now! My sister was diagnosed with Primary Progressive Multiple Sclerosis 4 years ago. She went for numerous treatments - even chemo, but in January 2012 we got the news that there is nothing more they can do for her, but now we do not know what to expect, she can still walk but barely, at times she is extremely confused.

[Koala77]

I'm pleased that you found us sadsister, and for those who may not have seen sadsister's introduction, here's the link: http://neurotalk.psychcentral.com/sh...057#post884057

[sadsister]

Hi there, does anyone know if a burst open toe is part af MS? My sisters toe burst open for no reason(the big toe) and I see that another toe is starting as well? And her left foot toes are all bending in wards? Oh yes, her big toe has been like that for more than 6 weeks and still has not gotten better? Really worries! She can only see the neuro in July

[Dejibo]

Hello sister, sorry to meet you under such circumstances. I dont know about the toe thing, I would call her md. you dont want it infected.

[NurseNancy]

hi marge and welcome to NT.
i agree with trying to find a new dr. perhaps and MS specialist or a good internist for a pcp.

keep a sx (symptom) journal with dates and the sx's you have. it will help your drs. and, there's nothing like a good physical exam.

hope to hear more about you.

[NurseNancy]

dear sadsister,

welcome to NT. i'm sorry about what's happening to your sister.
i don't know much about PPMS but others on the board do.

i hope even tho her drs say they can't do anything for the MS that they are not giving up on trying to help your sister with sx's (symptoms).
perhaps a 2nd opinion?

could you possibly get some sort of home health help for her?
hope to hear more about you 2.

[NurseNancy]

hi erika and welcome to NT.

i'm glad you found us. it sounds like you've been struggling for a long time.
i know you will find lots of support here, and friends.
looking forward to more of your posts.

[Dani2375]

6 months ago I had and episode that caused Drs to order and MRI which led to questioning if I have MS. They performed a lumbar puncture, an MRI of my neck, blood tests and evoked potential tests. At that time all the tests came back negative except for the evoked potential test on my eyes came back borderline. My neurologist at that time was not able to tell me it isn't MS but wanted to do another MRI in 6 months and see me. I go for that appointment today. I am worried that I will still not have an answer even though the only symptom I show is extreme fatigue. Is this typical?

[sadsister]

Hi Dani,

Well from my sisters symptoms of PPMS I can say that extreme fatigue is part of it,she is always tired and seems to sleep the whole day and night, she is maybe awake for 3 hours a day, but keep in mind that some of her meds also makes her drowsy, maybe you should go for a second opinion?