New to the board - so greatful I found this place

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kimmerz
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/13/2007 12:27 PM (GMT -6)   
Hi all.  I have been looking for a good MS support board and this one seems to be the one for me.  You all seem so supportive and kind.  That's what I'm needing right now.
 
Let me tell you about myself, and try not to make a book in doing so :-) .  I am 44, female, and have been told that I have been "pre-MS" for a number of years.  I have leasions on my brain, but they are not the size of the werner finger that they use to confirm a diagnosis.  I am a Certified Medical Assistant.  I have three teenage girls, a 17 year old and twin 13 year old that are type 1 diabetics.  I recently remaried to a wonderful, supportive, loving man.
 
My symptoms are quite extensive.  I fall a lot.  Last week I was home alone and fell going up the stairs (duh), hit my head on the hardwood floor and was out for about an hour.  My girls came home and called an ambulance due to the very large bruse and cut on my forehead.  I have bilateral numbness in both feet to my kn ees and both hands to the elbow.  I don't have feeling on the skin, but I sure do have the nerve pain deeper down in the skin.  My eyesight is blurry, even with new glasses.  I see a lot of floaters.  I have migraines and am having some bladder control problems.  There are days that I know what I want to say, but simply cannot get the words from my brain to my mouth.  This frustrates me.  There are many days that I simply don't drive because of the numbness.  I have a strange symptom though, I get like charlie horses in the muscles in my abdomen.  Anyone else experience this?  They HURT!!!  I also have Degenerative Disc Disease.  I take prescription pain killers and muscle relaxers.  Without the meds, I don't know what I would do, although there are days when they don't even touch the pain.
 
I called to make an appointment with a new neurologist and the receptionist went to check to make sure my primary doc had sent my chart notes.  She had, and this neuro had reviewed them and at the top put "new MS patient".  I would rather know than not know, but it is still a scary feeling.  I am thinking that I need to buy a cane and maybe that will help my balance.  There are days that I will not even go downstairs to do laundry because I am so unsteady on my feet.
 
My girls and husband are wonderful about supporting me, and I feel truly blessed.  We have only been married since April 6, 2007.
 
My questions for right now is:
Does this sound like symptoms any of you are having?
Do any of you take muscle relaxers and pain tablets?
Have any of you gotten a definite diagnosis of MS with lesions that are "not quite large enough"? Meaning, were you diagnosed on your symptoms rather that the results of an MRI?
Do any of you have relatives that have MS?  I have 3 in my family.
 
Well, I've thrown out enough for now, but I sure would like to hear from anyone who would take the time to respond.  It would mean the world to me to be able to talk to others that are going through the same things I am.
 
Oh, also, do you have any websites for "cool" canes, not just plain brown ones?  If I need to use one, I want to make it fit my personality.
 
I am not going to give up this fight.  I am doing my best to think positive thoughts, but it sure would help to talk to others who can relate to me.
 
Thank you so much for reading this and I am looking forward to getting some feedback and to form some cyber friends.  Blessings to you all, may you have a good day today, and a better one tomorrow.
 
Kimerz
 

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/13/2007 12:44 PM (GMT -6)   

When were you told that you were "pre-MS"?  That's a classification I've not heard of, before.  I suspect that, if you'd gone back regularly to the neuro, or asked for a second opinion, you'd be classified as "having MS" by now, given the fact that you have multiple lesions, and lots of symptoms that are indicative of MS, as well as relatives with MS!  I'm not a betting woman, but I'm going to bet that your new neuro will wonder about that classification, too, and start you on proper treatment for MS.

Re-reading your post - -sounds like several years have gone by since that "pre-MS" diagnosis.  Im also going to bet that you have many more lesions now, and they are of the "proper size" (whatever that is!) to confirm the diagnosis.  You're a medical assistant, and so you know that MRI's can and do change over time, even brief periods of time, measured in months.

Yes, a cane can help tremendously with balance. It sounds like you're long overdue for one. Do go to a physical therapist though, for a session or two on "proper cane fit and useage". You'll get lots of tips about how to navigate stairs (both up and down!), ramps, other obstacles, and the best way to use the cane to support yourself. I don't know of websites for fancy canes, but I have a nifty blue aluminum one, now taking up space in the back of my closet (I use a wheelchair full time) so I know they're out there.

The muscle spasms you describe seem pretty typical, particularly "charlie horses" in the legs.  I don't take meds for them, but there are some available. What you are using now may be sufficient, or you may need to increase the dosage some. Just be careful that you don't get your muscles TOO relaxed that your legs cannot support you well.

Good luck with your new neuro visit.  Don't be surprised if the doctor orders a new MRI of your brain and maybe your spine, and repeats all the older tests before confirming the diagnosis, though.  And presumably he'll talk with you about the drugs available to slow the course of the disease - -referred to around this board and other MS boards as the CRAB's -- Copaxone, Rebif, Avonex, and Betaseron.

Come back with any questions; folks here will try to help.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


kimmerz
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/13/2007 1:01 PM (GMT -6)   
The "pre MS" diagnosis came about 6 or 7 years ago. I live in the Pacific NW and there is quite a large population of folks here that fall under that classification, you are symptomatic, but the MRI may not support a difinitive diagnosis. It's like a wait and see holding pattern. In the mean time, you get worse.

BTW- the charlie horses aren't only in my legs, I also get them in the muscles in my abdomen. And yes, I am sure the neuro will order all new tests, etc. I had been going to a neuro in Seattle, but that is a 40 minute drive, then a 35 minute ferry ride, then a cab ride up the the hospital. So I told my doc I needed someone closer. This new one is about a 20 minute drive. That I can do!

Thank you so much for answering me. I'll keep coming back, hoping to give and receive support. Have a great day-
Kimmerz

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3537
   Posted 9/13/2007 5:31 PM (GMT -6)   

Hey Kimmerz,

Welcome to the board.  I was diagnosed with MS just over a year ago.  I just wanted to say hi and offer my support.  I also have the numbness in my feet.  I got my cane at www.fashionablecanes.com 

I like it a lot.  You can have them cut it to fit you.  They have some info about fitting but Uppitycats is right.  You need to go have a physical therapist measure you and show you the proper way to use one. 

I hope you enjoy this forum.  I have found great friends and support here.

love and prayers,

 


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 9/13/2007 6:36 PM (GMT -6)   
Hi Kimmerz,
Hi and welcome to the board. To answer some of your questions, i do experience alot of your symptoms, however alot of diseases  mimic ms.( Never heard of pre-ms) I do not have anyone in my family with ms, however autoimmune disease is in my family. Several with RA and Lupas. I guess i am the lucky one to get ms. I do not take pain meds or muscle relaxants, however, i do take Baclophen which is prescribed for ms/sci for spasticity and does help with pain ( so i guess you can say its sort of the same thing i guess.) I do use a cane because i too am severly off balance and it does help. I have a few that i use with different outfits, LOL. I figure if i have to use one, might as well be stylish. Gretchens website is great, but just an fyi too, if you don't want to order online, Any durable medical equipment store has them too. I've even seen them in drug stores like CVS, etc. too. Also i agree with the other gals, to see a PT for a few lessons in cane use. They will set it at the correct height and instruct you in proper usage. Well, it is nice to hear from you, i hope this helps, and hope to see you on the board again, welcome.Its a great place.
Take care,
Lynn
Dx Dec 06, Rebif,44mcgs 3 x wk, Baclofen, Lyrica, Celexa


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/13/2007 8:07 PM (GMT -6)   
Hey Kimmerz!

Welcome to the board!! I'm so glad to see u'r here and are asking questions. This is a great site full of wonderful people. I hope u can get some difinitive info at u'r next appt with the new neuro, but as the others suggested, u'll likely have to go back thru all the testing and mri's. Good tho...the dx will be certain if it comes. We have live chats on Monday's at 6:00pm (cst) each week. I hope u'll be able to join us. Take good care and let us know how u'r appt goes friend.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 9/14/2007 2:54 PM (GMT -6)   
Hi Kimmerz,
I am wondering if your pre ms diagnosis is what we call benign ms. Sounds like you may have moved on to a more active form. I think that the lesions can be far more troublesome as to where they are located rather than just how large they are. You probably should ask the new neuro for a new MRI. Good luck and it is good to hear that your hubbie and daughters are so supportive and helpful. Sounds like the cane is a great idea. Good luck and keep us up to date on how things are going. Dale

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/14/2007 3:24 PM (GMT -6)   
Hi Kimmerz,
 
    Welcome to Healing well and the MS forum!  I just wanted to wish you the best of luck at your doctor appointment coming up and hope you get some definite answers.  If you do a google search for decorative canes for women you'll get a lot of different shops to choose from.  The really do have so many different styles and colors now I'm certain you find one that's right for you. 
 
    Please come back and let us know how you are doing and how things go for you at your appointment.  We have a great group supportive group here, and it sounds like you got a good support group at home as well.  Congrats on your recent marriage too, wonderful! 
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

kimmerz
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/16/2007 11:43 AM (GMT -6)   
Thank you all that responded. I will indeed keep you up to date on my appt, etc. Perhaps the "pre-ms" is the benign ms??? I have, as a Medical Assistant, trained folks on how to use canes and crutches, but it is different when it is yourself. I will look at some of the websites mentioned. I am like a sponge right now, trying to learn all I can. I keep a pain/symptom diary and a list of questions for my doc. That way, hopefully, I'll get a good percentage of my questions and concerns addressed.

You all seem like such nice, caring people. Thank you so much for takin g the time to respond to me. I'll be keeping in touch - take care-
Kimmers
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