What were your first symptoms/signs you had MS??

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songstress
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Date Joined Jul 2005
Total Posts : 393
   Posted 12/11/2007 10:27 PM (GMT -6)   
just curiousity

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.


photogirl1358
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Date Joined Apr 2006
Total Posts : 299
   Posted 12/12/2007 12:03 AM (GMT -6)   

Hi there,

I really like your quote!

I hope you aren't suspecting MS on top of everything else you have listed...

My first symptom was fatigue, but didn't realize that until after I was diagnosed.  My first obvious to me symptom was my left leg going numb, followed closely by my left arm and bad balance.

Shar

 


Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


Gretchen1
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Date Joined Jan 2007
Total Posts : 3523
   Posted 12/12/2007 8:19 AM (GMT -6)   

Hello Songstress,

My first symptoms were severe vertigo and balance issues that landed me in the hospital.  A month later and after a second flare, I added vision problems, bowel and bladder issues and numbness in my left hand. 

With Shar, I am hoping you are not looking into MS as a possibility for yourself.

Thanks for posting.

Love and prayers,

 

 

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


hms1
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Date Joined Dec 2007
Total Posts : 12
   Posted 12/13/2007 12:06 PM (GMT -6)   
In 1995 I became exhausted while writing my book that got published in 1997. I would have to lay down to find the energy to keep going. A coffee cup full of coffee I would hold while writing my book would inexplicably pour hot coffee on my lap. I was always tired having to rest/write/rest/write....

freezinginAK
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Date Joined Nov 2006
Total Posts : 1052
   Posted 12/14/2007 12:26 AM (GMT -6)   

  My first symptom was fatigue and as things progressed I had headaches, vertigo, tremors, fine motor skill loss, a shocking sensation, numbness, a lack of reflexes in my legs so far and losing my right leg that wont lock into place so I end up tripping over things a long with other things but yet too be DX with MS but my new doc seems to be more pro-active and finding out what is wrong with me

  Cowboy


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Beau2006
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Date Joined Apr 2006
Total Posts : 388
   Posted 12/14/2007 11:34 AM (GMT -6)   

Good morning ....well I have just been dx with MS.  Lesions showed up on my MRI.  I have been tested and tested, and seen doctor after doctor for two years - and now finally - a dx. Although I am not pls with the dx, I am so relieved to have finally received a dx... now we can get on with a treatment plan, and loose the worry that has consumed my life for two years.

My very first symptom, as I think back, was about 3.5 years ago where I had double vision out of one eye. They eye specialist wrote it off as nerve damage, and that it should clear in about two weeks - which it did. If only he would have explored this a bit more.

After that, and it was quite a time that had passed, before another incident occurred, which happened to the same eye - this time - it was distorted, blurry vision that lasted for quite a time - on and off for a couple of months.

I noted also that I tired easily, followed by a strange feeling in my head, not really dizzy, kind of a foggy feeling, over all just strange.  This has been ongoing, some good days some bad days for the past two years.

Then to follow was muscle pain in my shoulders and neck, lower back, knees, etc.  Tingling and numbness stared in both of my hands, and then the final straw was when I bent my head downwards, I get an electrical shock feeling going from my neck all the way down to my toes.

And that brings me to today.....

Have a nice day

Gary


Gretchen1
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Date Joined Jan 2007
Total Posts : 3523
   Posted 12/14/2007 6:39 PM (GMT -6)   
Hey Gary,
 
Welcome to the MS board, Gary.  I am sorry about your recent diagnosis.  You seem to have quite a positive attitude about all this and that will carry you a long way.  We will stand by you and support you while you go onto start a treatment.  I hope you post often and keep us informed as to your progress. 
 
Love and prayers,
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


hms1
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/15/2007 4:42 PM (GMT -6)   
Gary,

My knees feel like someone hit then with a baseball bat. Sometimes they feel like they are on fire., If I apply pressure to the front part of my kneecaps my feet feel like they have electricity being applied to them bzzzzz. The bzzz feeling doesn't hurt though and goes away the instant I release the pressure.

I can resonate with anyone experiencing MS-related back pain. It's nasty. Seems that when pressure is applied, my brain shifts from signaling pain to sensing and signaling the pressure being applied. It gets confused. Applying pressure is a relief.

I've had MS since 1995 and am now in the secondary progressive stage Amazes me I am still walking. I really hobble on occasion when I cannot lift the toes of my left foot.

Time is no friend of mine as I experience the reality of what MS is doing to me. It's a struggle.

Mike

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/17/2007 3:36 PM (GMT -6)   
Thanks to Gretchen and Mike for your posts.  On one hand, it came to me as a great shock that I have MS, although I do have to admit that I had this thing in my heart telling me that I did.  On the other hand, it came as a bit of a relief to know now what is wrong with me, as I have been worrying for two years - no one could seem to pin it down.  Ive had three MRI's, it did not show up on the other two, but it sure as heck did show up on this last one.
 
I have been very positive, about this, as I know that there are worst things out there then this, and with the drugs available, I have my fingers crossed that it will leviate some of the symptoms - especially the head thing - light headed, yuk feeling. I am not anticipating miracles, but I am anticipating in feeling better. Although I would just as soon loose the electric shock feeling that I get when I bend my head forward.
 
Again, thanks, and I am sure as things come to mind, I will be asking questions.  I just ordered through my neurologist - copaxone - so I am hoping the this does the trick.... it did bum me out abit today, as it impacted me when I ordered the medication - guess the final truth and realization that I have MS - but I will survive, and continue on with my head up
 
Have a great day
 
Gary

Gretchen1
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Date Joined Jan 2007
Total Posts : 3523
   Posted 12/17/2007 5:34 PM (GMT -6)   

Hey Gary,

I am also on copaxone.  I am very sorry to tell you that copaxone will not do anything for your symptoms.  Copaxone treats the progression of the disease.  It will, if it works for you, slow down the disease anyhwhere from twenty to forty percent.  It will not help your head.  I have had vertigo for a year and a half.  It was my initial presenting symptom.  If your symptoms do get better, you did that on your own.  Most people have some small remyelination just as a typical course of the disease.  There are some meds that can treat symptoms but those are seperate from progression therapies like copaxone, rebif, betaseron, tysabri and avonex. 

Good luck with the copaxone.  I find it very easy to manage and I have almost zero side effects from it.

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 9:38 AM (GMT -6)   
Hi Gary,

I'm new to this board but would like to welcome you as you begin with an absolute of knowing you have Ms. It also was a relief to me but sad. Sad that the hope they'd find an answer, an operable answer was over.

My presenting symptoms were nothing more than my hands falling asleep. I've picked up many many symptoms with each flare and never get past 65days until its that time again. Actually 65 days is the longest and I'm appreciative of ever day of that.

You will find relief with diff symptoms with Neurontin, Bacoflen, Lyrica, (maybe b12 injections) and many other medicines for different symptoms.

While its true that copaxone won't prevent or change any of your symptoms. There are medicines for many of your symptoms up and coming , which I hope are few.

The above medicines would be worth you looking at if you haven't already. As far as learning which is for what and what other ones are being used also. Vit D supplement was instructions from one of the top 5 hospitals in america for me. They said they've recently learned that it can decrease Ms symptoms.

I hate the vibrations ive felt in my spine but oddly its never with the bending of the neck.


thanks and welcome back with your dx

Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Mammie
New Member


Date Joined Dec 2007
Total Posts : 8
   Posted 12/19/2007 12:57 PM (GMT -6)   
I am still waiting for the results of my latest MRI.  I have had 2 MRIs one showed 2 "spots" and the one 4 years later showed more "spots".  No one is saying lesions.  I am 63 years of age and this started about 10 years ago.  First it was the double vision and then extreme balance problems.  I now walk with a cane and sometimes even use a rollator.  I had to quit work 8 months ago because of all of this.  I also have hand tremors and terrible muscle spasms in my upper back and neck.  The fatigue is unreal and when I take a shower I have to lie down afterwards to get my energy back.
 
My father had MS and did not get his diagnosis until his early 50s.  However, I remember that he sure showed symptoms well before this.  He passed away when he was 79 and still was just walking with a cane. 
 
I have had evoked potentials and that test was fine.  I am just so sick of not knowing what is the matter with me.  My neurologoist says he is just not ready to tell my I have MS and still wonders if it is just small vessel disease.  On top of this I now live in Michigan and have to travel back down to Indianapolis as I had to cobra my insurance and can't get new insurance until September.  So even if I wanted to seek a second opinion it will be September until I am able to do so.
 
Just want to know what is the matter with me.  Oh yes, my primary care physcian says she thinks it is MS.
 
Sandy

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/19/2007 1:14 PM (GMT -6)   

Hi there Sandy....well I am knew to this, as I just recieved my dx last week.  I know what you are saying about waiting and waiting and waiting until someome comes up with a dx.  It sounds like they (your doctors) are skirting the matter, and do not want to step forward and say yes or no to MS until they have conclusive evidence.  Unfortuantely, you did not have enough spots on your MRI - for instance, in Canada anyways, there have to be the appearance of at least 9 spots or lesions on the brain before they will come forth and make the MS diagnosis.

The onlything I can suggest, is that you keep on them - and request another MRI to be done in 6 months or so - to see if the number of spots have increased....also, if you have not already done so, go back, and write down ever little symptom that you might have had over the last two years, and when - and also keep a record of anything that comes and goes until you get your MRI.

It took two years, and a million tests, before getting to where I am now, and that was all because of my last MRI showing lesions - the other two MRI's that I had showed none - so it is kinda of a hit and miss thing......I think it depends if you are having a MS attack, or if you are in remission, which then allow time for your body to repair the myelin sheathing covering your spinal cord....hense, no lesions...

Gary

 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 12/19/2007 5:55 PM (GMT -6)   

Hey Sandy,

I was diagnosed with only two lesions on my MRI.  They were both on my brain.  They later found a spinal lesion as well but that came after the initial diagnosis.  I have never heard that you needed 9 or more to get a diagnosis.  That is almost unbelievable!!!!!  Is it still that way in Canada (Gary)?? 

Check out this site.  It discusses diagnostic criteria.  It says you can get a dx without a single lesion.  It goes on to say that if a lesion does not develop after the first couple of years, that further investigation may be needed to rule out other causes. 

 http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_sourcebook_diagnosis

You definitely need a second opinion.  Good luck with the insurance issues. 

Love and prayers,

 



Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 

Post Edited (Gretchen1) : 12/19/2007 5:06:25 PM (GMT-7)


Mammie
New Member


Date Joined Dec 2007
Total Posts : 8
   Posted 12/19/2007 6:51 PM (GMT -6)   
Gretchen and Gary,
Thanks for your comments. Hope to get the results of the MRI that I had last week soon.
Sandy

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/20/2007 9:27 AM (GMT -6)   

Hi good morning - I was just referring to the information on my MRI report where it states that in order to be conclsuive for a dx of MS, they need 9 or more lesions.  I know it sounds crazy, but I did contirm this with the neurologist, who agreed, stating that I had 10....

I started Copaxone last night, and so far, so good. Wow os that stuff ever expensive - $1400.00 per month - thank God for a good medical plan coverage for drugs!!!!

Merry Christmas everyone.

Gary


KayinStJoMo
New Member


Date Joined Dec 2007
Total Posts : 2
   Posted 12/20/2007 1:00 PM (GMT -6)   
Fatigue was my first symptom but did not realize it was MS as I had type II diabetes and they thought that is what is was.
Dizziness when I would bend over and then my left eye went gray and they dx'd it as optic neuritis.  Did an MRI and I had white matter lesions so they did a spinal tap and found the oligochlonal bands.  I had 3 so dx'd MS. 
 
I thought I was going crazy and was relieved to finally have a dx.  I am on REBIF injections. They did IV steroids and my eye is almost back to normal, except for after dark. Then lights are blurry to me.
 
I am starting to have some fatigue again.  My best time is the first few hours of the day.
 
Hang in there.
 
Kay
 
 

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/20/2007 2:14 PM (GMT -6)   

Hi Kay, thanks for the post. Yes I noticed that fatigue had set in, and then 3.5 years ago I was experiencing double vision in my left eye - which went away, but I guess unknowingly at the time - although an eye special advised me that it was some sort of optical nerve damage - it was an MS attack.

I was too, so glad to get an dx, as I too was starting to think that I was going a bit crazy. Mind you when you hear this enough times from a variety of doctors - you start to believe them.  But luckily I did not beleive them enough - as I DID NOT take any of the tens of anitdepressants etc they were all trying to give me.

I did have a family doctor appointment last night, and we had a candid conversation - where I brought to his attention that just because someone is feeling dizzy, and and neck pains ansd strains, and tingling sensations in hands, that it should not just be isolated to being stress and having anxiety - mind you after months and months of trying to figure out what was wrong with me, some anxiety did set in from worrying every day of my life as the what the heck was wrong with him.

Gary

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 12/20/2007 2:27 PM (GMT -6)   
Wow lots of new folks in this thread!  Kay, Gary, Sandy, Kiera, Mike welcome to all of you :-)  
 
My DH's first symptom was fatigue like many of you, followed by numbness and burning pain in the feet.  It took a very long time for him to get his dx but when they did test for MS every test was positive for it. 
 
Kay, I'm glad you decided to post and I hope your vision continues to improve.
 
Gary, best of luck with the Copaxone and I hope it's effective for you.  DH has been on it 7 years now and I really believe, as does his neuro, that it has slowed things down tremendously. Merry Christmas to you too!
 
Sandy, I hope you get your answers soon.  DH got a dx with five lesions, but his EVP and LP were postitive also.  I'm sorry you have to wait so long with insurance issues, maybe your pcp can prescribe some symptom relief in the meantime? 
 
Mike, yes MS can be a struggle. Some of it you can plan for, some of you it you can't but really life itself is full of obstacles and you never know what's going to happen tomorrow.  That's how we view it anyway, my husband and I and just try to enjoy the things we can and deal with things as they come :-) Just yesterday, his powerchair malfunctioned and he was stranded in bed. He can no longer use his legs and can't get around without it.   Luckily I was able to fix it, but boy was that a stressful day!  Feel free to vent here anytime and please know you are not alone.
 
 
 
 
 
 
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Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/20/2007 2:35 PM (GMT -6)   

Hi there Kimber, thanks for your post. Its nice to know that there is great support out there - especially for us newbies who have a million questions and what if!!!

Thanks again

Gary


TinyTricia
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/4/2013 11:55 AM (GMT -6)   
This is in regards to having 9 lesions in Canada to be diagnosed.. I am livi g I. Canada and have 14 lesions and due for another MRI but I still don't have a diagnoses as of yet I'm told they have to be in the right places in order to diagnose it S there can be other illness making those spots... Example mini strokes. I'm very frustrated at this point due to my symptoms and just want a diagnosis as I have been dei g with this for three years now😢good luck and have a great day everyone

TinyTricia
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/4/2013 11:58 AM (GMT -6)   
Oops just realized this is an old thread my bad😛

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 9/4/2013 6:48 PM (GMT -6)   
Hi Tricia,

I have heard it is hard to get a diagnosis in Canada. It's very expensive to treat MS. Since Canada has to pay, a diagnosis can be long in coming. Best of luck to you.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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