...and...I am back yet again.

[poeticsoul]

Hello all.
Its been a couple of years, again. Seems to be a pattern. lol To make a LONG story shorter...I will post the links to my 2 posts from 2 yrs ago:
http://www.msworld.org/forum/showthr...at-would-hurt)
http://www.msworld.org/forum/showthr...gain-last-week

Well...In the time since I was last here, I am now divorced 1 1/2 yrs and happier in THAT sense at least! lol It was an emotionally/verbally hurtful marriage that then became loveless and the ex was NEVER caring or supportive of my health issues...heck he'd roll his eyes if I winced in pain even. But anyways...I am now living with my boyfriend, Gary, who was also actually my first real love and the boy next door growing up! Literally! lol We found each other again on fb, he had never married and well, the rest is our real-life fairy-tale story! lol Gary is the opposite of my ex and is amazingly caring, supportive and loving-which is such a refreshing and wonderful change!

OK...so, I have been having terrible neck/upper back/arm pain/numbness/burning-right sided mostly but also numbness on, left. It was thought I had neck/spinal issues so was sent to a neurosurgeon, who ordered a new c-spine MRI. Went back to him yesterday for results figuring I was facing neck surgery and would happily do so because I had convinced myself it must be neck/spinal issues and NOT MS after all, causing my current issues! BUT, boy was I blindsided when the doc popped in my MRI cd and looked and said he sees NOTHING from a surgical point of view, but that he does see signal changes...to which I said, "Wait, you mean lesions?!" He looked surprised and I said, "They already found tiny white matter lesions in my brain MRI several years back." He said, "Yes, there are lesions on your spine. You need to go see an Neuro/MS Specialist for this. You probably have MS."
I was shocked, to say the least!!
Soooo...they gave me the name/number/info of the MS Specialist at an MS Center and I have to call Mon morn and make an appointment.
After all these years...now lesions are in my c-spine and may really be facing a DX of MS now.
This time I am very scared. Been crying on and off when it keeps hitting me again.

I'm use to dealing with so much, what with my Lupus, Fibro, OA, etc...etc...etc...but this is really frightening because I KNOW what MS can do/cause as I know a couple of people who have MS. One being an old childhood friend, who I spoke with today who told me she too, has lesions on both brain and spine and now has Aggressive/Progressive MS and gets infusions 2xs a mth now 2 1/2 hrs each. My heart broke for her and made me fear for me all the more.

I still have the issues I had 2+ yrs ago, but just kept thinking it must be Lupus/Fibro/etc and then the neck/spine issues...but I guess not.
So, just filling in the blanks of these past cpl years and current issues and will know more soon, I guess.
Thank for 'listening'
Cathy

[Mamabug]

Welcome back. Sorry to hear that you are still in limbo. Hope that docs can either, finally, either dx MS or rule it out altogether.

I'm also sorry to hear about your difficult marriage, but glad that you and Gary have re-connected.

[22cyclist]

I am glad you are going to an MS clinic to see an MS specialist so they can rule it in/out once and for all. You will feel a lot better once you know either way. MS is not a death sentence. I am secondary progressive too and get an infusion once a month for 3 hours. It has been really helpful. I have three lesions in my C-spine, and 4 in my brainstem, several in my thoracic, and several in my brain. They do collect. Let us know how your appointment goes, OK? Write back with any more questions.

Take care
Lisa

[poeticsoul]

Thank you both for your replies.
I made my appointment this morn and the first one they had was for August 26th!
This waiting will not be fun. :/
They are sending me an info/form packet and I have to get records/reports/etc and mail them to them with the forms before my appt. So I have some homework to do to. lol

[jreagan70]

They are sending me an info/form packet and I have to get records/reports/etc and mail them to them with the forms before my appt.

It's also a good idea to have your own personal copies of your medical records -- doctor's notes, lab test results, MRI discs and radiology reports. Be prepared to pay what you think is too much for them.

Even though you or your other doctors' offices send records, they might get lost or something else might happen that they're not available for the doctor, and the doctor hasn't seen them before your appointment.

It has happened to me twice that records that were sent somehow never got to the doctor I was seeing. So it's a good idea to take your own copies of your records with you to your appointment.

[JerryD]

I am happy to greet you and welcome back to the boards. I hope that your doctors find a diagnisis and the dx isn't MS. MS sucks ! I hope that you are diagnosed with something that can be corrected. Not treated but corrected. Good luck

[Teekybird]

Hi,
I went back to the previous posts through the links you provided. It looks like you have been having possible symptoms going back to 2012? The incident with your eye/s sounded like optic neuritis to me. (But I'm not qualified to judge that!) Anyway, just wanted to respond. Being diagnosed for me was not that terrible because deep down, I really felt I had MS. I was actually happy that by being diagnosed I could at least begin treatment to fight MS. For me, not knowing for sure, and not being able to take action is really more frustrating and upsetting.

Anyway, good luck to you. Glad to hear that you have a better support system at home now with a new boyfriend.

In the meantime, until you see the MS neuro, my recommendation to everyone is to make sure you are at a good level of vitamin D (blood test) and also eat a diet rich in omega-3s or take additional supplements.

Take care

[poeticsoul]

Thank you all for replying.
I appreciate any info, advice and support.
This waiting is the toughest!! :/
I am having a LOT of 'zaps' and pain and numbness these days and trying to not let all this stress me out because I know, from having Lupus and Fibro, that the stress can make me sicker...as I've also read the same about MS.
So, got my info packet and have been filling out forms and calling docs for records and such.