Calling all newbies and lurkers

Hello everyone,

We have had a serious influx of new members here recently, and try as we might, we are concerned that many of you have been overlooked and not welcomed properly.  I can't even begin to guess as to the number of new members here  in October alone.  I would like to welcome you to one of the best places on line to connect with others and ask your MS questions, rant a bit, and share some humor.  The people here are not only friendly but also quite knowledgeable.  

So are you new here?  Is there something you can share with us about yourself and what brings you here?  Please let us know by writing a few lines here.  I hope you'll join us often.  

My best to all of you, Lulu

[Quixotic1]

I would like to add my welcome and encourage anyone that seems to have fallen by the wayside to speak up.  It really isn't pushy at all.  It's just that posts can be pushed to the second page in less than a day.

I hope all the forum continues to help out with greetings and posts.  If you don't know what to write, just pop in and say "hi."  We all appreciate the attention.

You are all the greatest!

Quix

[goofysmom1]

Just recently joined & was welcomed very warmly by a number of members!  :)  I have not been diagnosed - but have symptoms that are indicative of some sort of neurological problem....like many here haven't had much luck with the doctors so far, but still trying!  

This is a great group of people - everyone is so helpful & generous with their advice and time.  

I am so thankful that I have found this group!

Chrisy

[deborah0904]

Hi, everyone.

I'm new and very thankful to have a great group of people to whom I can refer.  I appreciate all the assistance I have already received.  

[Lulu54]

Hi Chrisy and Deborah,
Let me welcome you with a big group hug since there are two of you we have overlooked.  Thanks forthe kind words about the folks here - everyone really does try to be helpful.  I hope you will share your journey through the pitfalls of diagnosing and living with MS here.  Together we all are so much the stronger and better .....  

Welcome again, Lulu

[meg321]

The words out !!  I could read this all day if i had time...i am so frustrated, i do this all the time.  I just wrote a long post on here and i hit something and lost the whole thing..makes me nuts!!  Is that a symptom you think ?? LOL

Anyway, i amnew here also.

keep coming back !!  meg

[Lulu54]

Hi Meg and welcome to the world of quirky web posts.... especially spooky on Halloween night!  don't feel alone with this problem, it happens to all of us more frequently than we would like to admit.  A tip the medhelp people gave me was to hit ctrl+c to copy your text BEFORE you hit post comment just in case it disappears into the netherworld!  

I'm so glad you keep coming back for more - there are much worse places on the web your could be hanging out on than here! be well, Lulu

[Erin0313]

I am new here also and want to thank everyone that has given advice as well as open and frank sharing of your symptoms and experiences. Just knowing that I can log on 24/7 has helped. I was going to join the local ms support group but had a really bad night before I got to it and am thankful that I stumbled upon all of you wonderful fellow ms survivors.
  I have been to more doctors than I can stand or count and I shy and forgetful when I do go. Sharing with you all and knowing that you have been there makes me feel better bringing these things up at the doctors. I don't ever want to be told that they have never heard of ms causing "that" again. With all of your help I won't.
   Thanks again
   Erin

[wildfire22]

Hi Lulu,
I am new to this community.  My back surg. thinks i may have MS. Scared to death, yes i am. I have so many health problems anyway. the back surg. failed. These sym. they think may be MS are very annoying. any helpful info would be wonderful.

[wildfire22]

so MS can cause extreme forgettfulness.  If so that makes me feel alot better in a way i guess. if it is what i have there is a reason i cant remember so many important things and feel so stupid and guilty about it.

[tot_teacher]

Hi All -

I feel as though I've received a very warm welcome since beginning to post here sometime last month.  I feel blessed to be able to post here and receive logical suggestions, info, and advice ... because I'm surely not receiving it from the doctors.  It's kinda frustating when you know your own body better than anyone, yet they always seem to be quick to dismiss a symptom even if it "fits" perfectly.

So I lurk here often, post advice when I can ( I'm new at this, and afraid not very helpful ) I post questions when I find it hard to find an answer ... I always seem to get a response that usually helps tremendously ... THANKS!!

I knew this was a kind and generous forum when I messed up my first post and posted it literally seven times in a row ... and the family here didn't think I was nutty ... I don't think :) and answered my post(s) anyway.. Thanks for not making me feel idiotic!

As alot of others ... I'm endlessly searching for answers from doctors who aren't necessarily willing to listen.  I am not ignoring the symptoms this time around because a dector dismisses them as not related ( as I did last time, and of course, symptoms are now worse)

Thanks again for all the kind words of encouragement and helpful thoughts.  It looks as though I'm here to stay ... especially if you let me !

-Alisa

[Lulu54]

Hi Wildfire, Welcome !  I'm so glad you posted your concern - it feels healthy to say out loud "I'm scared."  Lots of us here - well actually the truth is all of us are scare by MS at one point or another.  Then we educate ourselves, become exremely proactive about our care and learn to get on with living the best our bodies will let us.  Not knowing is always the most frightening thing.

Keep in mind that MS will not kill you - but it can seriously affect the quality of your life.  That's where this wonderful forum can really help - so many of these people are experts because they have lived with this disease for years.  their hints, suggestions and usually gentle proding are most helpful.  I hope you will visit oftem ask all the questions you want, and read the health pages.

As for the memory thing - yes, cog fog is very real but don't overlook the fact that your brain is on overload and trying to process many new ideas quickly.  Soemthing has to go and often the ability to track mentally is affected.  Don't panic about the memory - it is possible its not as severe as you might think.

My heartfelt best to you, Lulu

[Lulu54]

I'm so glad you have stuck around and jumped in.  I am not an expert either, but find many of us just want an acknowledgement that someone else is listening.  We don't always have answers but we do have big shoulders to lean on.  

Be well, Lulu

[meg321]

Thanks for that tip, just so i dont forget it...lol  

hugs, meg

[dijmart]

I just joined today, because I wanted to post for someone.

Anyway, I'm 38 and have been dx. since I was 21 with RRMS. I had attacks more often and more severe in my 20's and even had to go on SSDI for many yrs., but then my attacks weren't coming as often, were milder, I felt better overall and decided I wanted to get off SSDI and go to school for nursing, even if it killed me. I had just gotten to the point that MS had taken alot of good yrs. from me and come hell or high water I was going to try to go to college and work as a nurse, even if I couldn't do it forever.

So, in 2004 I went to college for RN (it was rough-lots of tears!), graduated May of 07' and now work as a Home Health RN. The journey has been long and exhausting ....still very exhausting, but I keep plugging along for now.....

I did have a couple mild/mod. attacks to deal with along the way, but I bounced back fairly quickly. Right now I'm dealing with weakness of my hands and lower extremities as well as fatigue.
Also, I no longer take disease modifying injections since 03'. One of them I was on for several yrs.(avonex), but depression was a side effect that I was no longer willing to deal with, I don't have any more attacks being off the injections than before, actually I have less.
-Diana

[Lulu54]

Hi Diana,

Welcome to this forum - I hope you will find useful information and company for this journey with MS.  Congratulations on finishing your degree as an adult student, and especially one so instensive as nursing.  I'm not sure my brain could do the science and math any more!!  Do you ever wonder if stopping the DMD's was right for you?  It sounds like you have done pretty well being off of them.

Welcome again, and I hope you will visit here often and share more of your experiences with us.

My best to you, Lulu

[Sailorsong]

You can probably thank CNN for the large influx of members. They did a story in Oct. on MS and mentioned this site amoung others. I did try all of the sites that they did mention but found this site the best. But maybe you shouldn't take my opinion too seriously since my IQ has dropped to that of a 12 year old. :) LOL

I used to design computers for a living but mostly due to cognitive problems I have been on disability since 89. I use to be really great in math, but now I have trouble doing even simple addition and subtraction. Not to mention my memory problems. At times my memory is so bad that I can't remember how to write my own name.

Thanks to all who have welcomed me so far!

Dennis

[LE1212]

Hi, I have posted a couple of times and lurked quite a bit in the past couple of weeks. I found the health pages a wonderful source of info. I was told I "probably have MS' a few weeks ago. Just had the first round of evoked potentials today, more tommorrow. Going to a MS specialist on the 17th.

I am just having sensory type symptoms in several areas like tingling, numbness, burning sensations, also been having bad headaches which I have never had before.

I have gone through all this 9 years ago when I was told I might have MS, went through all the tests and they said I didn't have MS, but overread my MRI. All I had was carpal tunnel they said.

Laura

[Lulu54]

Hi Laura,
It sounds like you maybe won't be hanging in limbo for long - I also moved through that quickly and got my diagnosis in September.  Though quick doesn't quite count for you since you started this 9 years ago.  
Its quite a stretch to go from possible MS to carpal tunnel.  We all hope it goes well with the MS specialist - keep us posted if you want, Lulu

Dennis, I know we have written before but I'm glad you wrote about the CNN connection.  I didn't know that but we have been swamped here for the past month or so.  Thanks for letting me know the reason. I understand the frustration with the declining cognitive skills - my family is finally getting it that I'm not bluffing when I give them that blank stare.  My best to you, Lu