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Old 10-15-2013, 09:16 AM #11
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Cleveland Clinic is supposed to have an excellent MS center, right?

Make sure to get and keep copies of all tests, MRI discs, etc.

Sounds as if you are getting some investigative testing done to get to the bottom of what's up.

And if your doc dismisses you, let him/her know that is NOT professional, then find another. I HATE docs who do this. I finally got a referral from someone here to a neuro who specializes in MS. This is probably most important for all of us with neuro symptoms that turn out to be MS.

Keep us up to date...
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Old 10-27-2013, 09:39 AM #12
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Quote:
Originally Posted by JoanB View Post
Hi Erika,

Nice to meet you too, and how kind of you to take your time interpreting my results. To answer your question, I had thoracic and cervical MRIs recently that showed lesions:
Multiple T2 hyperintense lesions within the cervical and thoracic
cord suggestive of a demyelinating process such as multiple sclerosis.
Last year, I had a brain MRI that showed no lesions, but some demyelation and I had a normal CSF except for elevated protein. At that time, the doctor ruled out MS, but I guess now that it looks pretty much like it is. It's not good news, but after trying to get doctors to take notice and dismissing my concerns that something is very wrong for over 5 years now, it's also partly a relief. At least now, it seems I have a 'real' disease, instead of just being whiny and lazy.

I'm hoping that the doctor at Cleveland clinic, who ordered these most recent tests, contacts me this week.

Thanks again,

Joan
Hello Erika,

I have seen two neuro doctors at the cleveland clinic in the last 2 months, and both have dissmissed my symptoms and said they were stress related. I was just wondering who you were seeing there.
I have been having speech and balance issues that won't go away now for some time, among many other issues including a lesion in white matter of brain on mri from september and mri of cervical spine that showed no lesions, but straightening of spine, herniated disc, and disc osteophyte complex. Neither neuro doctor would go any further with me.
I wish you luck in finding some answers.
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Old 10-27-2013, 12:10 PM #13
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Hi weeta,

I'm the one going to Cleveland clinic; Erika was just responding to me. I'm sorry you're not getting the answers you need. I'd tell you the name of the Dr I'm seeing, but I'm not sure if it's OK or wise to post actual names here. I could PM you his name if you want.
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Old 11-10-2013, 09:33 AM #14
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Default It's official
Just wanted to let all of you who've been so helpful know that I got the official word that yes, it's MS. And judging from my symptoms, I have PPMS. I have an appointment with an MS specialist here in Pittsburgh on Dec. 9, so I guess I'll know more then.

It's not good news, but after 5 years, 7 neurologists, and screaming and jumping up and down trying to get someone to pay attention, it's something. It's an answer to "When I can't walk 3 blocks or climb stairs, etc., what do I tell people? What do tell family? What do I tell employers when they see me stagger at work like I'm drunk?" At least now I have that.
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Old 11-10-2013, 09:49 AM #15
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Joan, I am so sorry you have a diagnosis of MS....that is a hard
one to have.

But I do recall from your first posts on PN how much pain you have been in and how many doctors you have seen over the years.
It has to be a relief of sorts to now have a diagnosis at least. So
therefore you can move on within the MS community and perhaps find some useful treatment and further support that way.

Warm regards, mrsD
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Old 11-10-2013, 11:12 AM #16
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Hi Joan B
My name is Synnove.
I have read your posts, and I just wanted to say to you that I am sorry you have MS. But also I wanted to say I am in a way glad for you that you finally got some answers. Now that the doctors know, a trestment plan can be made.
I tell you from experience that it is a difficult time just having all kinds of neurological symptoms, and not getting answers and a diagnosis.
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Old 11-10-2013, 01:40 PM #17
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Dear JoanB, I am so happy for you that the DX process is over..
Now, at least, you have been validated and are not an idiot.

As far as telling people, tell your close family, and allow them to be
supportive and helpful. At work, you may have to tell your Boss,
especially if you're staggering. You may take a cane to work, and
just let them wonder, but,at least they won't think you are drunk.

Best of luck and wishes to you, as you join us in our journey..
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Old 11-10-2013, 08:53 PM #18
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Glad you finally have an answer...although it's not a club I'd ever want membership in, but had no choice...

Make sure to take care of yourself now-good food, exercise, rest, and living the best life possible.

Keep us updated too
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Old 11-11-2013, 12:07 PM #19
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welcome to a club nobody really wanted to join - but we have really great members!!!

*please think long and hard about disclosure to work. You can state you need an accomodation (and what you need i.e. frequest breaks due to medically induced fatigue or monitor anti-glare screens due to visual disorder) but you do not have to reveal your actual diagnosis. Unfortunately, this can sometimes play into employability due to fear or ignorance. See the NMSS website for info or talk with local MS chapter for advice.
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Old 11-11-2013, 08:51 PM #20
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Thank you everyone for your kind responses and advice. Yes, it’s a relief to have a diagnosis. And there are some things that put it in perspective. For example, I’m 57, and this all started when I was 52, so I got to have a lot of years with pretty good health. Also, at this point it hasn’t affected upper body function or vision at all. I know that can change, but at least for now I can still work and do most things for myself.

A special thanks to you, mrsD, for all the time and energy you put into helping people here. I’ve often marveled at your time, energy, and commitment.

Also, I’ll think long and hard about what to reveal at work. It’s kind of obvious (if you’re not a doctor) when you see me walk that something’s wrong—many people have remarked on it. I took a tumble last spring at work, and several people saw it. I can see both pros and cons to telling vs. not.

There are so many things to think about now, and I’m sure, many lessons to learn. I'll be back, and I hope that somehow I can pay your kindness forward by helping someone else here.
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