help!!

[candy158]

I don't know what is happening to me.  my brain isn't working right. i can't remember things, and apparently i talk incessantly about unrelataed things in a converstaion, and embarass my hubby.  i don't even know that i a doing it.  i can't see oproperly and i am falling over sometimes.  I don't even kno is happening to me.  am i imagining it, or it is really happeninbg........ i don't know what the future holds.  ii have a great hubby but he is getting mad at me cause i don't know what i am saying or anything.  i have what i call shudders and kind of trance out...... please help, has anyone else done these things.....

w that i am like this.  my dr is stupid and i don't want to go there, cause if know he will just say that it is my brain lesions and there is nothing they can do.  i cry at the drop of a hat now, cause i just don't understand whathelp me, please !!!

[candy158]

thanks sweetie, that was a good note.  LOL .... heh, do you heat up???  like the hottest you have ever been ?  I'm wondering if that too could be my MS or the surgry.  Menopause is so much fun, and this chucked in with everything else, it is no wonder that I'm buggered up.  LOL

Hubby seems to be getting it sometimes, but not always.  ( that is men for ya) .... but the code thing that would be great, if I could remember it... I'm having aloat of trouble with short term memory ... and tht is causes him some greef.  

This just *****, that is the only word for it...... SUCKY !!!!

Dusted today though, so at least my house looks shiney.......

thanks for caring.,
Candy

[supermum_ms]

Hey Candy,

Hate to tell you kiddo but with 120 lesions it probably is the lesions fault, i'm flumuxed by the too old for shots, are you meaning too old for DMD's? If that is the case, I think you need this cleared up because there is NO AGE CRITERIA on the functionality of DMD's!

If your not dx with RRMS that could account for why but if the SPMS is questionable I would persuew that, you might need to be firm about what you need, especially if the doc's are a bit disorganised with your type of MS.

You've just had a big opp, big for any woman and probably more so for one with MS, I would not be surprised if you are experiencing hormonal chaos as your body adjusts, so please get that checked out too.

Now about your hubby, give him a big whack on the back of his head and tell its from me for being such an incensitive duffus!! Do you think you could work out a secret code word or touch that would tell you that your off track and allow you to save face, just something between the two of you?

Hang in there kiddo :-)

HUGS.........JJ

[candy158]

I forgot to say something, I am on 2100 mg. gabapentin, and Zoplicaone to sleep, and muscles relaxants (flexeril) for the spasms., but, I think that is all.  They say they won't give me any of the shots because I'm to old.  I am 52 now, and am recovering from a 9cm tumor that was removed from my right ovary 4 months ago.  They took verything at that time.   I'm wondering if this could also be menopause thrown into this mess as well.  

Think I need to see the Dr.

tahnks again,
Candy

[candy158]

Thank you all for your comments.  To answer a few questions..... I have been diagnosed about 1 year ago.  Or they they VERY PROBABLE and that is the diagnosis.  They also call it clinical MS.  Anyhow, I have been through 8 neurologist in the last 2 years.  One says one thing, and the other says others.  One said I was in the "secondary progressive" phase now, and that was the end of that.  I go to othe hospital to the MS clinic where I Get my Neurologists.  My Dr. has seen me since the beginning diagnosis.  Actually he told me that I had MS when I went into get presecriptions renewed.  2 years ago January 10.  Quite a shock to say the least.

My migraines are back too.  Been 2 years with out them, and now they are back too.  
I am afraid to go to the neuro's again as they will say a bunch more stuff that NO ONE will agaree on.  

My husband is supportive sometimes, but like us all he has his bad days, and it just seems like he has been having a few in a row.  But when he treats me like a kid, and takes me home because I keep babbling (as he puts it), that is somewhat upsetting to say the least.  

This new stuff has been going on for aboaut 2 months now.... and the "lightening" bolt headaches that only last a second or two, but hurt like the devil.  

I will be going to the Dr. soon, but am a little apprenhensive.  I was suppoed to go for the cog. test, but they never called me, so I guess I should look into that .  


Apparently I have 120 lesions on my brain, some larger that a quarter, and some Very small.  but they said that many.

But because there are or were no new ones on the last 2 MRI's that I had, they booked me for on in February 2011.  So, we have a little way to wait now.  

Thanks again,
sorry if this is disjointed, but I can't seem to think to straight,

Candy

[Audrey_M]

WOW! SOUND LIKE YOU ARE GOING THRU A LOT RIGHT NOW.

USING CAPS BECAUSE YOU SAID YOU ARE HAVING TROUBLE SEEING.

AGREE WITH OTHERS THAT YOU COULD POSSIBLY BE HAVING SEIZURES. HOW LONG DO THE SHUDDERS AND TRANCES LAST? A FEW MINUTES OR MORE THAN A COUPLE OF HOURS?

ALSO IMPORTANT TO CHECK OUT YOUR MEDS FOR ANY POSSIBLE INTERACTIONS. YOUR PHARMACY CAN DO THIS FOR YOU.

I'M GOING TO ASK SOME QUESTIONS FOR YOU TO ASK YOURSELF:

DID YOU LIKE YOUR DR. BEFORE THIS ALL STARTED HAPPENING?

WHEN WAS THE LAST TIME YOU SAW YOUR NEURO AND WERE THESE NEW SYMPTOMS DISCUSSED AT YOUR LAST VISIT? IF NOT, IT MAY BE THAT YOU ARE VERY EMOTIONAL RIGHT NOW AND SCARED THAT HE/SHE WILL THINK ITS THE BRAIN LESIONS. IF YOUR DOC WAS GOOD IN THE PAST, GIVE THE DOC ANOTHER TRY WITH THIS.

COULD IT BE WITH YOUR COMMUNICATION PROBLEMS THAT YOU MAY NOT BE UNDERSTANDING HIM? WOULD BE A GOOD IDEA TO BRING HUBBY WITH YOU ON ANY VISITS UNTIL THIS IS RESOLVED. HUBBY HAS PROBABLY OBSERVED THE MOST AND CAN PROBABLY PROVIDE MORE INFO THAN A FRIEND.

IS HUBBY SUPPORTIVE AND INFORMED? MIGHT WANT TO HAVE HIM READ THIS POST. ALSO CONSIDER HAVING HIM HELP TRACK YOUR SX FOR YOU, ESPECIALLY IF YOU ARE NOT AWARE OF SOME OF HIS OBSERVATIONS.

HOW LONG HAS THIS BEEN GOING ON? YOUR HUBBY MAY KNOW BETTER THAN YOU AND IT SOUNDS LIKE IT IS TIME TO GET INTO SEE YOUR NEURO AS QUICKLY AS YOU CAN.

HOPE YOU CAN GET IN TO SEE A DR SOON AND GET THIS SORTED OUT SOONER RATHER THAN LATER.

BIG HUGS TO YOU AND HUBBY TOO, IF HE READS THIS.

AUDREY

[RedFlame]

I am sorry to hear all that you are going through and the fact that you aren't getting the support that you need.  You need the help and understanding with you and help you navigate your way through the medical jungle.  He needs to be educated.  

Many of us here with MS have the 'brain fog' like you describe.  I was a Family Educator for parents with a child with autism.  I also had a hot glass hobby.  I can't do either right now.  

Have you been diagnosed?

[rendean]

Dear Candy,

I am SO sorry you are experiencing these issues. Know the crying for no reason quite well!  I would certainly have the "shudder and trancing out" checked out. Perhaps you could go to the ER next time it happens.Those symptoms sound like some types of seizures.

The rest is how my cog fog presents. No memory, talking and going off on a tangent, can't remember if I took the roast out o the oven or not.....
Getting a neuropysch test is a very good suggestion. At least you know what your true deficits are and work on improving them.  Ditto what Ess said about including DH in the process.

I hope you feel better soon!
Ren

[essdipity]

Poor Candy, I do feel for you.

If you are having shudders and what feels like trances, that could be a form of seizure. That should be checked out right away. On top of MS cog fog, that could be very frightening.

Another thing  to pursue is a neuro-psychological evaluation. This could give a name to your various mental issues and show where you have deficits and where you are still strong. It would clarify in medical terms what's happening with your cognition. Your husband should be very much involved in this process, and should be with you when you get your results. Maybe then he will understand, and will not react out of fear.

This is all so hard on a family. But understanding the problems and possibly getting medication for them will help a lot.

Good wishes,
ess

[slightlybroken]

I'm very sorry that your going through this. It sounds like your experiencing cognitive problems. I have issues with this also..off and on. I use to have a photographic memory, but now, I have to write everything down because I might forget because I'm not sure when this symptom will hit me. I have problems with "word finding" and can not recall a simple word for an item in the house. Usually I will point and get out that thing...and that's about it. And don't get me started on spelling...I've even experienced a dyslexia off and on.

My only advice is..you should explain this to your husband...that this is part of your undiagnosed disease that could be MS if your not DX. Cognitive problems are common in MS. Maybe you should find a good neuro too. They are out there...just a little harder to find..at least from my experience.

Here is a web page about it:
http://www.mult-sclerosis.org/cognitivedysfunction.html

[Sumanadevii]

It could be MS fog orrrrrrr

Have they put you on any new medications?  I had a horrid reaction to Fentanyl patches.  After trying them?  I know why I don't use pain meds.  Just be sure to look over the medications, you never know.

If it is either, you need a doctor that coordinates all this mess for you.  Maybe your husband needs to take a more active role?  If not, do you have a sibling or friend that could be your advocate?  Someone needs to go with  you when you see the doctor.  I know that MS effects us all in different ways but that fog seems to happen to many of us.

[figuerpa]

Your doctor will say it is just brain lesions and there is nothing they can do about it?????? Why are the lesions there? Has he ran any tests on you? You should maybe go see someone to get your cognitive abilities tested.

I know the feeling of crying at the drop of a hat. All this is frustrating for everyone. Your husband needs to be more understanding of what is going on. It is hard when people get angry with you for things that are out of your control.

I really encourage to go see your doctor or find another one that will work with you and do what needs to be done.

Good luck

Paula