@ Rest Area 51 Paging ALL MS Newbies Easter

[gomer]

Welcome to Rest Area 51... a special haven our your New MS family for newbies Dx'd w/MS in recent days or years and old-timers that are newbies at heart.

Happy Easter

Take a well deserved break from your travels on the MSuper highway,pull into a nice cozy shady parking spot, Pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air . Help yourself to fresh Cider and donuts. The camp fire is roaring in the open pit ready for hot dogs, marshmallows and smore's Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends, friends that understand. We have a virtual soap box, feel free to vent anytime.

Being a newbie can be as scary and lonely as being in limbo, Remember we are you family away from family. The BIG question answered means many more new questions and decisions.

PLEASE.... Let us know how YOU, a member of our MS newbies family is doing.


Have a QUESTION? Please don't be shy........
The only dumb stupid question........is the one NOT asked.

Take care and hope all our rest area crew are doing well.

?How was your Week?........
...Good I hope, Any Dr.apts tests etc?

? What does April have in store for you?
....Any Dr. apts. tests etc.

Gomer Sir Falls-A-Lot

[gomer]

Morning resters............where R U hiding this morning after?

Did you have family or friends over for a big meal?

Hope every one is doing OK.


Gomer Sir Falls-a-lot

[journeyman]

Some Results

Hey, I picked up a copy of my MRI report and labs - saw Primary.
Labs - all OK.
MRI - Remains pretty much unchanged. I had one area that had been present from dx but has increased and is really active and has slightly increased.

Now I just have to see how the Neuro interprets it.

While I was in Tex. the first of March the beautiful Blue __?___ Bells (Bonnets) I think were in bloom. The fields were blue with the flowers. Turns out I reacted to the pollen as did my Grandson. His eyes were swollen shut and I could hardly breath.

When I got back to Tampa it took three days to get over it. But then with all the allergic stress it turned into bronchitis. I finally got my Primary to give me an antibiotic.

We go out for the Blue ? and my Grandson's b'day each first of March. I think I will stay home next year. This has happened for the past three years. He is three years old.

So to answer your question I had a blissful Easter weekend in bed while everybody else was in church and the family picnic.

It is so crappy getting old. The good news I am in remission. It usually lasts six months.

I may be out there but I discovered a symptom log so you can predict some things IF you are one of those predictable ones. I seem to be so I can sorta plan for the bad times. My wife usually spots it before I do. Maybe this has been around and I just discovered it. I set it up for me and we will see how predictable I really am. Maybe it will help.

Sorry to rattle on but I have been out of it for a while medically speaking.
Dave

[journeyman]

Hey out there.

Where is everybody?

[happy42day]

Hey Journeyman! I'M desperate for answers!

I posted this a few days ago with the hope of getting some replies, but no such luck. I re-posted it today under a new thread hoping that might do the trick. Then I saw your thread...can you help? I'm really desperate!

Overwhelmed...

As a newbie to the whole MS thing (was just diagnosed in January), I am sooooo overwhelmed right now.

I don't even know where to start. Does anyone here have tinnitus? It's driving me absolutely crazy. Any suggestions?

On the cognitive issues (which is the biggest disability to me, then the fatigue, then the tremors, then the pain, then the wobbly legs, then the....then the....ha!), I have read good and bad about Aricept. My neurologist said she feels comfortable prescribing it for me....any thoughts from everyone here on that?

In regards to the tremors...does anyone here experience those? Any suggestions?

Also, I decided to try Avonex. Is there anything that can be done for the side effects? I read something about cortisone? Does anyone know anything about that?

I am so lost right now. My daughter found this site for me and it has been a joyful relief to see others that I can relate to, and at the same time so sad.

[journeyman]

Happy42day Long explanation for you.

I'm in my 4th year of MS. I have a weird form of tinnitus and when I do have it I have just learned to ignore it but it seems to be a pre-cursor to my flairs.

Mine is a loud buzzing sound. I can hear others speaking over it clearly but when alone it drives me crazy. I usually have it about a week.

I can't help you with the Avonex question as I was on Rebif for about a year with no luck.

I don't know if this is what you are asking for but this is my understanding of the MS process.

We have a system that attacks things that seem wrong in our bodies like germs. They for some reason whether it be genetic, anatomical or acquired from environment become confused and think we are the enemy. (auto-immune.)

Our nerves have a protein protective coating and that is what MS thinks is the enemy. It attacks the coating and begins destroying it. It is like the insulation on a wire. It seems to "nest" in areas of our brain and spine. It enough damage is done the nerves begin sending inappropriate / confusing, absent or various pain signals.

This process, depending on severity and location can be a minor inconvenience to crippling.

It too me a year and a half to "begin" to accept my MS. When I stopped worring about it the stress seemed to lessen the the severity. Don't get me wrong - every time I get a new symptom the worrying starts all over. And for me my flairs each time seem a little worse.

This last time I lost my ability to speak. As you can see from this entry I live for talking. So between the cog problems and the speaking problems I was really scaired.

My last MRI showed I has having a flair in the temporal area which is part speech / interpreting / cog/ and planning part of the brain so it all makes sense.

I hope this helps you with some of your questions. I am sorry it is so long but that is just me. I'll be hanging out in this area if you have more questions. I am a medically retired psych RN so these conclusions are what I have gleaned with my education and experience.

Dave Tampa, Florida
Journeyman

[happy42day]

Hi Dave!

Thank you for your reply!

Can you explain what a "flair" is? I'm so confused because my symptoms just do NOT go away. Does a flair happen and then those symptoms go away after a certain amount of time?

The tinnitus has been around for 5-6 months now so I'm starting to fear that I'm stuck with it. It drives me absolutely nuts.

When all this stuff first started happening over a year ago I just kept saying "it will go away". After a year of going through every test under the sun, I was diagnosed with MS and even then said "it will go away". I'm still fighting the "I'll accept this" stage. Finally giving in to taking meds and getting on this site has been a start though.

I've been having a lot of cognitive problems too. Started taking Aricept for that a few nights ago so we'll see how that works.

How does the MRI show a flair?

Thank you SO much for your detailed reply...I appreciate it so very much!

Kris

[journeyman]

Happy42day

I began with numbness and burning in my right thigh. The Doc said, "Well that's interesting. That's all I got. It was not incapacitating but highly annoying. Several years later my wife began to notice that I was mis-interpreting things in movies, the paper what she had said to me --that was the worst.

Then came the "TIA's /Strokes." I would have episodes lasting for aboout five minutes of total blankness. I was like a new born baby. There was nothing in my head. I didn't even know my wife or daughter who were standing right there. About a day of confusion followed the events then I would clear. Being the great RN that I am I refused to go to the ER or hospital but did agree to go to a neurologist after the third one which was the worst.

They ran me through all the tests and finally after 20 years from the leg symptoms they diagnosed me with MS. I don't think I am typical but some of the doc's say that people are often mis-diagnosed at an early age.

During the "Rebif" stage things setteled down and the symptoms became barely noticeable. Then there was this clearing stage. They told me I was in remission. About six months later it came back with a vengence. After six more months it went away. Then in six more month it came back even worse and so it goes. The call it RR for (I think) remittance / remission. Meaning it comes and goes.

Each time it comes back I understand is a flair and vary from person to person and length of time of stay. So as I understand it a "flair" is a resurgence of the symptoms or the start up of a new set of symptoms. For me I have three areas in my brain that are affected. The main one is word formation, interpretation and cognition.

These are probably not textbook as each person seems to have their own pattern. This was just my understanding and experience.

I hope this fill in some of the gaps for you. Still here for you with your questions getting through this time.
Your MS buddy.
Dave

[happy42day]

Same here with the leg…I told the doctor some time ago that my leg had a “vibration” in it and I received the same response “Hmmm, that’s interesting” and nothing else was said or done. (Looking back, I think I’ve had symptoms of MS well before I was diagnosed. Probably years.)

The first time that my kids got really scared was when I had a day when my cognition was a replica of “10 Second Tom” in the movie ’50 First Dates’. My son immediately ran me to the ER and by the time I got there I didn’t know my name, let alone be able to sign it, and thus began the year+ long road of all of the tests before the diagnosis. The cognitive part is very scary for both patient and family.

Thank you for explaining the flair. I’ve been thinking that a flair was just something quick…like your legs might feel wobbly for a second maybe a couple times a year, and then everything returns to normal. At this point I am so far from that and I am glad that you used the word “vengeance” as that explains me to a T.

Thank you so very much for your help. I so appreciate the time you have taken to go into such detail and I’m very happy to know you are here to help me along the way.

Back ‘atcha MS Buddy!

Kris

[journeyman]

One short note (relatively - for me!)

being a "Western-trained" RN the pain got so bad that I broke down and went "Eastern medicine." I turned to Accupuncture. The problem with the leg was gone in just one treatment. ($100 -150.oo)

It was well worth it. It is not like regular needles. She put in about 20 and I only felt one when she it what she called the trigger point.

If you or your insurance will pay for it give it a try. I have NOT tried it for cog problems but they tell me it works. I would have never thought of this but I had a student when I was teaching Health Sciences who's mom was an accupuncturist and came in for a "show and tell" day and I let her show me how the needles were painless. Since then I am confirmed to try whatever for relief.
Dave

[happy42day]

I wonder if...

....I wonder if the acupuncture would work for the tinnitus?

[Sequoia]

....I wonder if the acupuncture would work for the tinnitus?

Acupuncture works for many things--pain, especially--but my husband has tried it for tinnitus and it didn't help.