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KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 2/14/2007 3:22 PM (GMT -6)   
Hi there,
 
this is my first time on any site like this....not really sure what I'm doing!
 
I have not been diagnosed with MS, but the neurologist has said that "if he was a betting man, then he would certainly put his money on it being MS".
 
I have had a negative MRI...it showed only one lesion, and my lumbar puncture was clear too.
I am waiting for my evoked potentials tests.
 
October last year I started to get weird sensations in my arms and legs....tingling, hot/cold etc.  Then got "fuzzy" eyes and weakness in limbs.  Also had some serious pain in one arm....kinda like tooth ache, felt too weak to move it.  This is what started the testing process. 
 
Once they started asking about my history I connected bladder issues from about ten years ago.....needing to go a million times a day.  Had heaps of tests etc back then, but I think the general  conclusion was that it was all in my head!  It has continued, but not so severe....so living with it fine.
 
Now I'm at a "wait and see what happens stage".  Feeling major fatigue in the afternoons, and toothache in my limbs????  Comes and goes.  Some days panadol takes the edge off, but usually it does nothing.
 
I have difficulty with grip...I.e. brushing teeth, shaving legs, opening bottles etc.
 
Because none of my symptoms are visable to others and I don't have a diagnosis, I think my friends and family think I'm being a hypochondriac!  Would love to hear from others in the same situation.
 
 

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/14/2007 8:22 PM (GMT -6)   
Hi Kas,
 
   Congratulations on your first post!  You did just fine and I hope we hear more from you.  We do have quite a few here in limbo as we call it (waiting for a diagnosis), and I'm sure you'll be hearing from them soon.  I'm sorry you are having problems and that wait and see game sure is difficult, but try to hang in there.  Please check out the resources here on Healing Well and there are a few other sites that might interest you and provide you with some information.
 
National MS Society website                     http://www.nmss.org  
MS Mimicers (site found by Uppitycats)      http://www.msfocus.org/publication_articleDetails.php?id=15
 
 
   We'll be here to help you during the process and give you support if you need it.   I hope your dx comes quickly and you don't have to feel that it's all in your head, because even though people can't see it, you certainly know its there.  Take care and feel free to ask questions or vent anytime
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 2/14/2007 8:29 PM (GMT -6)   
Hi Kimber

thank you so much for the reply!!!! It feels so nice to communicate with someone who doesn't think I have "imaginitis"!!!

Thanks for the sites, will definately have a look. Information seems to be the only thing that eases the worry at the moment.

Take care.

kas

MSBLESSED
Regular Member


Date Joined Feb 2007
Total Posts : 70
   Posted 2/14/2007 9:01 PM (GMT -6)   
Hi Kimber,
Isn't this an awesome site?!? I am very new to it too, but love it! There are actually people out there going through EXACTLY the same thing. I can relate with your going to the bathroom a million times a day and night. I would get up at least 3 to 4 times a night just to pee. The docs blamed it on my one Venti Mocha from Starbucks that I had at 6am that morning. NOT! I don't drink sodas or even eat candy. My doc gave me something called Ditropan (generic name) and it helps. I only take half the amout recommended because fatigue has been my biggest challenge since being diagnosed in November of 2006. My first Neuro said that it looked MS'ish but she would have to do a spinal tap. I endred the spinal tap (LORD JESUS!) and the results came back "just ok". What the heck does "just ok" mean? I'm not one of those people to sit around and just wait so I called Kaiser Member Services and told them I needed a second opinion. Going back just a bit I started getting an "eye-ache" back in September which they dx as Optical Neurotis (spelling?). They did the MRI and the first Neuro (who I got rid of) said the MRI showed "a few leisons". After I met with my current Neuro (who just so happens to be the Chief of Neuro) he showed me my MRI and there were between 20-25 lesions!! That's certainly NOT a few! I started my MS therapy on January 2nd of a daily injection of Copaxone and it's worked well for me. RESEARCH was the only thing (and a lot of prayer) that got me through. Aside from a few injection site reactions, I'm doing good. No weakness or numbness. Fatigue has been my MS Monster, but I'm working on that one too! I'm no quitter and I WILL find something that works for me. I wish you the best and know that I will be praying for you while you are in "limbo-land". Also, I had to be a pest by calling every single day for cancellations and buggin' the heck out of the Admin staff to get in to see the Neuro so soon. I didn't (and still don't) care one single bit. I got the answers I needed by asking (sometimes begging) for help. A girls gotta do, what a girls gotta do! :-)

KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 2/14/2007 9:17 PM (GMT -6)   
Hi MSBLESSED
The site is amazing....the only problem being that I have spent my entire day on here reading and haven't got anything done....it's addictive!!!  Have gotten so much physcological help though, like you say there are so many people on here who's lives seem to mirror each other!  "We are not alone..."!!
 
By the way, I wanted to ask you about your heart issues.  about 10 years ago I had a few episodes where my heart would race ridiculously, ended up in hospital a few times.  I haven't had anything since.....but after reading one of your replies I'm starting to wonder if it could have been MS related????

KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 2/14/2007 9:21 PM (GMT -6)   
Hi again MSBLESSED

....I must have been asking you about heart when you were writing your reply on the other Thread.....thanks for that!

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/14/2007 9:26 PM (GMT -6)   
Hi Kas and MSblessed,
 
   I am so happy that you both find this forum helpful!  We really do have a great bunch of folks here all willing to help out and support one other, indeed a wonderful thing :-)   We also have chats every Monday evening also in addition to the forum itself.  I hope you both can check that out sometime too, we would love to have you join us.  Take care.
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 2/14/2007 11:35 PM (GMT -6)   
Kas,

I am in limbo also. I had a clean MRI so no dx yet. Fatigue is definitely my biggest problem. I have been to several neuros only one said it wasn't MS. One said probable MS and my first and favorite keeps looking, trying to figure it out. He also keeps reminding me that a MS dx can take years. When diagnosing MS you have to rule out everything else. That takes time.

So we sit here in Limboland, waiting and talking with one another. We make jokes about yachts and beaches like limboland is a real tangible place. We welcome you to join us. Pull up a chair and stay a while. Rhonda and I are going to go to the spa on our yacht trip. Maybe we'll see you there.

Good luck,
Lysha
When everything's coming your way, you're in the wrong lane.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/14/2007 11:36 PM (GMT -6)   
Hey Kas

Well we meet again... ;) I see everyone has already answered u'r questions and quite well too, but i wanted to stick my head in here and just say i'm undiagnosed too and can certainly relate to ur situation. All my tests have come back neg/normal and i still have weird and uncomfortable symptoms. I also wanted to ask u about the 'toothache' in u'r limbs. I have shooting pains that start in one place...arm or whatever...and it'll keep shooting for awhile. No reason or trigger that i can determine...just happens. It's sharp pain and kinda painful, but not anything i'd have thought related to these other symptoms. How do u'rs feel? I get them everywhere....legs from my hips up or down...knees up or down, in my arms from shoulder or elbow up or down...no pattern. Even have had the pain in my face! Thanks for any info u can give me on this. Maybe another piece to my puzzle, maybe just a rogue pain!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 2/15/2007 3:54 AM (GMT -6)   
Hi Rhonda,
 
sounds like your pain is a bit different from mine.  Mine doesn't seem to "shoot"....it's more of a constant dull ache...usually in a whole limb.  Like yours it does seem to change all over the place from one limb to another, and has very litlle pattern to it.  I have the heaviness at the same time.  Having said all this I'm realising that today has been a relatively pain free day...yay!!!  Maybe it's on the way out....here's hoping!  I hope that you have some luck sorting yours out.  I read something recently, and I can't think where, but it was about the fact that "pain" didn't used to be considered related to MS.  Apparently it's only been in the last ten years (don't quote me on that....memory not so hot), that they've connected pain symptoms with MS.  .....ongoing are the mysteries of MS!

misslocke
New Member


Date Joined Feb 2007
Total Posts : 1
   Posted 2/16/2007 4:47 AM (GMT -6)   
:-)  Hello all,
This is also my first post on this site! 
 
I have also not been diagnosed with MS - So far I have had an MRI scan on my head and spine, which showed up two lesions on my brain and one on my spine. My Lumber Puncture showed up all clear and am now waiting for the results of a recent evoked potential test.
 
My first two doctors said that they thought it was highly likely it was MS but my Nurologist has said he did not think it was. He wants me to wait and see what happens a few years down the line because some people only have one relapse and it can never happen again????? Is this true?
 
It all started in June last year after finishing 4 exams I went to the hairdressers and started to have pins & needles in my left foot, on leaving the salon the pins & needles had extended up my left leg - I thought nothing of it and expected it to eventually go - It didn't - It eventually moved up the whole of my left hand side and I also experienced a tooth ache/shooting pain sort of sensation down my left arm and leg. I was also feeling awfully tired and weak. I had these symptoms for approx 2 weeks so I went to my local GP who told me to go home and come back if it got worse as he had no idea what it was - I went back after a few days to another GP who did loads of blood tests etc all showing up negative apart from my Thyroid gland (for which I now have to take Thyrokine) - Eventually my whole left hand side was numb and freezing cold and the pins & needles had also started in my right leg, I was struggling to walk and had to go on my hands and knees going up and down stairs - So I went to the casualty at my local hospital were more tests were done and eventually I was sent home with a promise of an MRI scan within 4 wks. This is what started all the testing...... 
 
The whole of the symptoms lasted between 6 & 7 wks. And eventually I just stayed at home and rested and they started to go away. I still get shotting pain sensations down my left arm and leg but its nothing compared to what it was!!! 
 
I feel like people think I am making it all up - Why would I?
 
I am only 25 years old and can't believe this is happening to me as I am so young!
 
I would love to hear from people in similar situations to me. And also from people who know of ways to relieve the symptoms through diet or herbal supplements etc.... The Nurologist has given me some sort of Anti-depressent/muscle relaxant sort of tablets for the shooting pains but I have not as yet taken them - because the side effects are very similar to my MS symptoms. eyes

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 2/16/2007 11:44 AM (GMT -6)   
Friday noon
 
Hello Kas:
 
If the neuro is unwilling to give a definite DX, then maybe go get a second opinion?
 
I do not know what your insurance situation is...but, doctors will respect you getting a second opinion.
 
Great luck.  John

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 2/16/2007 10:36 PM (GMT -6)   
Welcome KAS, I haven't had a chance to say hello and hope you find comfort here. Take care. :)
Michelle ><>
Co-Moderator MS forum
 
Happiness is not a destination but a day-to-day journey..


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 2/17/2007 1:33 PM (GMT -6)   
Hi Kas,

I too have a constant sometimes dull, sometimes tender, sometimes achy feeling in my arm muscles and all the time in my back, neck and shoulders. I am also in limboland after seeing a neurologist for 3 years. I did have some lesions show in the MRI's and the blood work came back normal. The other tests such as evoked response potential etc, should slight abnormalities.
I took a year off from the testing and MRIs of brain and spine, but am going back to see the neuro in March. I COMPLETELY understand your feeling like a hypochondriac. Now when people ask me how I am at work, I just reply fine. Before, I would tell them how I felt and everyone would just laugh and call me a hypo or say that I just had a crush on my doctor - things like that. It can be very frustrating. Even family, doesn't understand why you need to lay down once in a while or why the dishes aren't done or the floor isn't vacuumed. It used to bother me, but now, I just let it slide. It's not worth getting stressed out over.
The people at this site are wonderful and suggested that I keep a journal of what I'm feeling (because everyday is different). I've been doing that and it does help. It is also helpful to take to the dr with you so that you remember everything. lol
Anyway - hang in there and know that there are people out here in the same situation that are ready to support you and talk to whenever you need.

Pam
migraines since 1974 ; septic hip - 1999 with birth of daughter ; hip replacement 9/03>MS limbo since 3/2004; dx acid reflux - 11/2006; dx compressed discs>dx RLS - 9/2006; dx IBS; dx RLS
Klonopin, hydrocodone, butalbital, prevacid and anything else that helps


KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 2/17/2007 5:57 PM (GMT -6)   
Thanks heaps for the support!   Booboobum, reading your post is like taking a dose of Prosac....made me feel so much better,  my situation hasn't changed but I feel so much more positive about everything!
I hope you get some answers in March!  But I'm sure I'll be in touch with you again before then!

booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 2/17/2007 7:22 PM (GMT -6)   
Keep us posted on any news.
Take care,
Pam
migraines since 1974 ; septic hip - 1999 with birth of daughter ; hip replacement 9/03>MS limbo since 3/2004; dx acid reflux - 11/2006; dx compressed discs>dx RLS - 9/2006; dx IBS; dx RLS
Klonopin, hydrocodone, butalbital, prevacid and anything else that helps


Treetops
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/18/2007 8:04 AM (GMT -6)   
Before I post another 10 paragrah letter I just want to make sure it isn't going to be denied again
Treetops

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/18/2007 3:31 PM (GMT -6)   
Hey Treetops

Welcome to the board! I hope u'r not having probs posting, but if u are or it happens in the future. feel free to email any of our mods and we'll be happy to try to help where we can. This is a great group of people who're willing to help in any way we can, so feel free to ask any questions or post any relevent comments! Also, we have live chats on Mondays at 6:00pm (cst). I hope u'll get a chance to join us! Again, welcome to the board!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


river watcher
Regular Member


Date Joined Feb 2007
Total Posts : 26
   Posted 2/24/2007 5:37 PM (GMT -6)   
Hi there.  I am new to this site and new to possible MS.  I am not sure how to navagite this site and unsure if I will be able to get back to this spot to see if there are any replies.  I was tested for MS at 21 when I started falling, having problems with my vision, bowels.  The best way to describe my feeling is that I have a 9 volt battery in my mouth for days at a time.  Tingles don't really cover it as it is stronger than that.  I had a lumbar puncture that came back clear.  Now ten years later I am still having all the same sensations and they are worsening.  I was treated for Lyme disease with lots of anti-biotics for three months and now all the symptoms are back again and my doc wants to re-test me for MS.  Will there be any changes from the tests I had years ago?  Thanks to anyone who may have any answers for me.  Love this site and looking forward to becoming more computer swavy...
Sherry

Post Edited By Moderator (Kimber) : 2/24/2007 6:08:25 PM (GMT-7)

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