Introduction of newly diagnosed MS person

[KimLV]

Hi, everyone. I have been reading this forum for months, and I think it is time to finally introduce myself.
I am a married 48 y.o. woman, and after many years of puzzling symptoms, I finally decided it was time to see if I could get a diagnosis.

So I started pressing my new family practice doctor to send me to a specialist. After several tests (x-rays, MRI's of cervical and lumbar spine, and blood tests) and office visits, I was first diagnosed with fibromyalgia, DDD, DJD, arthritis, and daily migraines with auras. I was given cymbalta and flexeril and sent off to p.t., neither of which gave any improvement to my symptoms.

However, I didn't feel these were my only problems, as I also had occasional blurry vision and thinning retinas, insomnia, balance issues, cognitive issues, lots of muscular weakness, pain, numbness, tingling, acid reflux and bladder issues. So I was sent to a neurologists.

More bloodwork, which came back that I was extremely low in vitamin D. An EMG was done, showing abnormal results from the cervical area. So, suspecting MS, my neurologist sent me for a brain MRI, using MS protocols. Results showed  demyalation in white matter. So then I was sent for a spinal tap and blood serum test. This also came back as having numerous bands.

So, upon my last visit to the neurologist, she looked at the results and said I believe you are positive for having MS. She asked me what I knew about the disease, which thanks to your awesome forum, I knew quite a bit. She told me she would like to immediately start me on MS medication (I selected Rebif). She also had previously prescribed gabapentin and high dosage of vitamin D supplements.

I will meet with a nurse in a couple of weeks to receive instructions on injecting myself with the Rebif. NOT looking forward to this, lol. I was also sent for more blood work. She said I will need to monitor this regularly, due to possible issues from Rebif.

Well, that's where I stand medically as of today.

While this is a scarey diagnosis, at least I have all of you with me on this forum, as my journey begins. I really appreciate the info that you all share so generously.

[KimLV]

Thank you everyone for the warm welcome.
As far as do I still have the dx of fibro, etc., I will find out more once I go back to see the doctor who diagnosed those issues, in a couple of weeks. I believe that I definitely have the DDD, DJD, and arthritis, since that was clearly seen in my spinal MRI's and X-rays.
I especially want to thank the people here who reminded anyone getting a spinal tap, to also make sure that they drew blood at the same time. My neurologist forgot to order that, so I asked the dr. doing the tap to call her, while I was actually on the surgical table! Thanks to knowing that info, I was saved the pain and expense of having to get a 2nd spinal tap, and was given my diagnosis in a more timely manner. Kudos!

[supermum_ms]

Welcome to our little MS community :D

Its great to have you come out of learkdom but I am sorry for your reason for doing so.......Hugs!

So does that mean you are still dx (diagnosed) with fibromyalgia, DDD, DJD, arthritis, daily migraines with auras and now MS or does your Dr have egg on his/her face because the dx of MS trumps all the bits and pieces, makes sense of your puzzle and excludes nothing?

You've landed in a safe place, no question is off limits and we'll do our very bests to keep you up and tootling along :o)

Cheers..........JJ

[DutchgurlBC]

Welcome Kim!
Wow, You could have written my intro to the group, except that my neurologists is unwilling to say I have MS. I am happy for you that you are able to start meds so quickly, and I hope the help stop the progression of MS. I am new here too... But welcome. Hope your family and friends and we can be supportive.

Johanne

[kwarendorf]

Hi Kim - I'm not sure what the time span was between first seeking answers and then getting them, but it seems as though your diagnostic journey was relatively short. This is a good thing for two reasons A) As Laura and Shell have mentioned, you can start fighting the battle right away and B) you didn't have to go through an extended, frustrating search for answers.

This is a great place. I visited numerous MS forums and this is the one I kept coming back to. People are knowledgeable and friendly. There are no know-it-alls. We all have MS or strongly suspect we do.

This last point is important. As much as my girlfriend supports me, she will (hopefully) never really know what it's like to have MS.  We here can laugh at things that others would find upsetting. We can expand our understanding of the disease. Lastly, it's a place to come and whine if your don't want to wear your loved ones out :-)

Welcome to our group, but sorry you joined.

Kyle

[sllowe]

Hellooooooo to you!

Thank you for such nice compliments about our forum family here, and I'm glad you learned alot and proceeded to find a doc to uncover what was going on :) Good work on your end.

I hope we can make MS less scary for you - knowing this disease well definitely helps the battle.  

Rebif is a good med. I fully believe it ceased further damage for me. I'd recommend it to anyone. I had a great nurse, and she was pleased with my knowledge too - it enabled her to discuss more indepth things about the med that she usually did not have an opportunity to talk about to newly diagnosed. So, be sure to inquire if you find yourself with just as-good-as a nurse - sure hope you get a winner :)

Thank you for joining us, and I look forward to seeing you around.
-Shell

[Lulu54]

I hate to say this but welcome to the club.  This is not an exclusive group and everyone is given the same membership card I am sorry you are joining us but you are in good company.  

I am glad you got these answers and can aggressively treat your MS.  That is so critical in keeping this at bay.


You already. Know this is a knowledgeable and compassionate group of people who are always willing to share or hold hands.  I hope we will see you around more.

Welcome again, Laura


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