Possible ms diagnosis?..scared,confused

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Possible ms diagnosis?..scared,confused

Postby Shay86 » Sat Dec 10, 2011 9:19 pm

So in mid October I was at work and started feeling off, as the day went on I noticed my handwriting was off, by the next morning I felt like my leg was super heavy so I took the day off from work. The day after when I woke up my gait was off and my hip down was numb, was referred to a neurologist who got me a ct scan. That came back clear, by this time my balance and motor skills were off. The neurologist then sent me for an MRI which took a week to get the results. I spent the week off from work waiting for my motor skills, walking and balance to return to normal.

My MRI came back with 6 small lesions (1-2mm in size) 1 lesion was active and was a little bigger like 8 mm and was the reason for losing my balance, motorskills and numbness. She told me at this point I had possible ms but we would need time to determine how my brain changed, so I took another week off from work to give my body time to heal.

The Sunday before I was to go back to work I woke up super dizzy and nauseous. By two hours of throwing up nothing I went to the er and by this point could no longer see, the neurologist saw me six hours later and gave me an iv of steroids. She then checked me into the hospital for four days for four treatments of steroids, by the time I was discharged my vision had improved but I still could not see. I have spent the last 4 weeks getting my vision back as well as getting rid of the numbness in my body. I have been super tired, easily fatigued, lots of headaches and yet face insomnia at the best of times.

I have not seen my neurologist in 6 weeks but have been referred to the ms clinic for further testing. I have 2 more weeks till that appointment and im really worried about misdiagnosis, I always thought ms was only diagnosed when other things have been ruled out but nothing has been tested no blood work, very little research into my life and history just the fact that I had symptoms and have 6 lesions...I'm sorry for the long rant I'm just wondering if this is normal protocol for diagnosis or not?! My husband and I were just getting ready to try for kids and I want to make sure I'm not mis-diagnosed so I don't pass any thing onto future kids that could have been prevented. Needless to say no one understands the stress, depression and confusion I have been feeling so I thought I would see if I can get some support from this forum.
Shay86
Newbie
 
Posts: 3
Joined: Sat Dec 10, 2011 8:59 pm

Advertisement

Re: Possible ms diagnosis?..scared,confused

Postby NHE » Sun Dec 11, 2011 2:30 am

Hi Shay,
Welcome to ThisIsMS. It's unfortunate that you find yourself here, but I believe that you will find this to be a supportive community.

Regarding an MS diagnosis, yes, it's often a diagnosis of exclusion. There are several other conditions which can mimic MS. For example, people are often tested for B12 deficiency and also lyme disease just to name a couple of examples. If your doctors are not testing for these things, then you need to be the proverbial squeaky wheel.


NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3414
Joined: Sat Nov 20, 2004 3:00 pm

Re: Possible ms diagnosis?..scared,confused

Postby euphoniaa » Sun Dec 11, 2011 5:39 pm

Shay86 wrote: My husband and I were just getting ready to try for kids and I want to make sure I'm not mis-diagnosed so I don't pass any thing onto future kids that could have been prevented. Needless to say no one understands the stress, depression and confusion I have been feeling so I thought I would see if I can get some support from this forum.


Hi Shay, and welcome. I agree with NHE about all the MS mimics, so you may have to nudge your doctor into doing as much testing as needed. Feel free to ask as many questions as you want, and I'm sure there will be someone to help you find more info. Please check out the other sub-forums here at TIMS and don't forget the "search" function.

I'll also give you a link to the NMSS information with the basic genetics of MS. Although there does appear to be a genetic component, there's not much of a direct "hereditary" connection. I'll also add a quote about that from NMSS that, I hope, will reassure you a little. Since MS is diagnosed so often later in life, many, many of us (like me) had our children way before we knew we had MS and definitely don't regret it. And many of us (like me) are doing okay even after years and years of MS. :smile:
http://www.nationalmssociety.org/about- ... index.aspx

This is from the National Multiple Sclerosis Society site, but you should check out the whole link:
How do we know that genes are not the only factor in determining who gets MS? The identical twin of a person with MS has a 1 in 4 chance of developing the disease. The fact that identical twins of people with MS—who share all the same genes—don’t always get MS, and that more than 80% of people with MS do not have a first-degree relative with MS, demonstrates conclusively that MS is not directly inherited and that factors other than genetics must be involved.


Good luck and keep us posted how you're doing.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Volunteer Moderator
 
Posts: 706
Joined: Sat Jul 15, 2006 2:00 pm
Location: midwest U.S.

Re: Possible ms diagnosis?..scared,confused

Postby Shay86 » Mon Dec 12, 2011 8:15 pm

Hey thank you guys so much for responding its nice to have someone to sound off on. My husband has been great support but we don't discuss my possible diagnosis much so this is nice! I'm not as worried about the possibility of passing on ms as I am other diseases such as lymes. I figured my doctor would be a little more thorough so I'm feeling a little lost, I have no problem with a diagnosis of ms I just want to be as sure as possible :) its hard not embracing me after seeing so many strong people on this forum!
Shay86
Newbie
 
Posts: 3
Joined: Sat Dec 10, 2011 8:59 pm

Re: Possible ms diagnosis?..scared,confused

Postby Shay86 » Sat May 12, 2012 8:15 pm

Hey just thought I would write a quick update as I have been super busy these last few months. I have finally fully recovered, and I am back at work full time, which is great. I saw the ms clinic in December and they said they would need a second event to occur to diagnose me. In the mean time I was tested for b12 and lupus. Noth blood tests came back negative and my follow up MRI 2 months later included my c-spine. I went back for another appointment at the end of February and they gave me the official diagnosis as well as offered to get me started on preventative drugs. To this day I still have not seen my MRIs but I guess with my c-spine included they had enough leisons to diagnose me as I have yet to have any further episodes with symptoms. As my husband and I are ready to start trying for kids I turned down the drugs for the time being. I'm still feeling a little lost with accepting the diagnosis as I feel they took the easiest way out. 2 MRIs and one episode of symptoms does not give me a lot of confidence with the diagnosis :(
Shay86
Newbie
 
Posts: 3
Joined: Sat Dec 10, 2011 8:59 pm

Re: Possible ms diagnosis?..scared,confused

Postby lyndacarol » Sun May 13, 2012 8:07 am

Good to hear from you again, Shay. Learn from the scare of MS in your history, live each day to the fullest – enjoy life and good luck to you and your husband. We never know what tomorrow brings.
User avatar
lyndacarol
Family Elder
 
Posts: 2382
Joined: Thu Dec 22, 2005 3:00 pm


Return to Under 25 with MS

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service