Update

[jamilea]

I had a full spinal MRI done last Sunday. 3 hours in that machine really sucked. I had w and without contrast. They had to restart some things because I kept having to pee. I picked up the disks and radiology reports today. I won't have another Neuro appt for a couple of weeks to discuss it but there are lesions in my c spine.

So I'm hoping that the process will be over soon and that I won't have to get a lumbar puncture. I don't know then.

Does a few brain lesions in 2010 with symptoms, and now it's up to 9 lesions in 2016...with what seems like 1-2 times per year of returning old symptoms and some never going away, and some c spine lesions in 2016...does that meet a criteria for clinically definite MS?

I'm trying to understand macdonald.

[Jules A]

Urrghhh I feel your pain, and haven't made it through a brain/spine with contrast combo without having to pee a couple of times for years.

No advice about your diagnosis but hopefully you are seeing a MS specialist. I was initially diagnosed by a regular neurologis who insisted I have the lumbar puncture but when I got a second opinion from a MS specialist he said it wasn't necessary for diagnosis. He said it would only be needed if I wanted more evidence that I had MS before starting medications. Being nearly blind for the second time in six months and a MRI that light up like a Christmas tree was enough evidence for me so I skipped the LP.

Best wishes and please keep us posted.

[ru4cats]

My neurologist would have said, "Yes". I'm only sorry you had to wait an additional 6 years. With MS, time is of the essence. I was diagnosed within 18 months of my first concrete symptom.

I was diagnosed on the basis of my MRI's, only; some lesions located in the brain and several on the spinal cord. On seeing my MRI's, my neurologist diagnosed me with MS, and I started Tysabri 6 weeks later. She said I could have a lumbar puncture but felt it wasn't necessary, and I passed.

Kudo's for spending 3 hours in the MRI machine! 30 minutes for my yearly brain is all I can handle!

Good luck.

[jreagan70]

Hi jamilea:

The MacDonald criteria require that 1) lesions that are characteristic of MS be 2) separated in time and 3) separated in space.

New lesions in 2016 after lesions in 2010 meets the criterion for separation in time. A lesion in the spinal cord after a lesion in the brain meets the criterion for separation in space.

IF your lesions are characteristic of those seen in MS, the lesions meet the MacDonald criteria.

IF you have had symptoms that are characteristic of those of an 1) acute 2) demyelinating event 3) in the absence of fever, you should meet the MacDonald criteria for the diagnosis of MS.

There might be circumstances that disqualify you from meeting the MacDonald criteria that you haven't told us about, but your neurologist should be able to explain.

[jamilea]

Thanks jreagan for explaining that. I couldn't make sense of that and you broke it down nicely.

As far as missing information I haven't told you, I am not aware of any other than what I'm gonna say next. The only information that I don't have right now is where all of the brain lesions are located. I just remember him saying they were "9 in the deep white matter". I asked him what location and he said, "where the myelin is".

The Neuro I've been seeing is still in his residency. He did have a more experienced one come in to consult with. He repeated some kind of follow his finger with my eyes but kept having me stop and do it again. And also touching his finger and then my nose. He had me repeating that one too. They both had frantic expressions and looked concerned. They both asked me a ton of questions about when things happened back then, how long things happened for, what I've experienced the last 7 years, etc.

It was very hard for me to go through all of the questions because it still feels traumatic for me. Before I left, the consulting Neuro said, "I think the doctors picked up the right ball with thinking MS in Maryland. We are just gonna pick the ball back up and run with it again."

The other information I do not have yet are the results to some CPt or Crp test, Igg or something. They also wanted to run an ANA test again. There were a few things that haven't posted in my Kaiser online thing yet. Maybe those tests take longer. They ordered the other ones after looking at my old records and seeing what tests weren't done I guess.

In any case, my family is coming to my next appointment with him to ask every question that all of us have had about the whole thing. I have a hard time remembering what I want to ask.

[jamilea]

Urrghhh I feel your pain, and haven't made it through a brain/spine with contrast combo without having to pee a couple of times for years.

No advice about your diagnosis but hopefully you are seeing a MS specialist. I was initially diagnosed by a regular neurologis who insisted I have the lumbar puncture but when I got a second opinion from a MS specialist he said it wasn't necessary for diagnosis. He said it would only be needed if I wanted more evidence that I had MS before starting medications. Being nearly blind for the second time in six months and a MRI that light up like a Christmas tree was enough evidence for me so I skipped the LP.

Best wishes and please keep us posted.

The having to pee a lot is the worst! I used to restrict fluids because of it but I learned that is not good either. Thankfully, I have coworkers who are understanding and they cover the front desk for me when I need to go. Our production assistants are guys. They even have started coming by to ask if I need to go LOL

I am not seeing a MS specialist because I've not gotten a clinically definite diagnosis yet. A couple of doctors in the past said that but I don't think they were right to say that so early on and they weren't even Neurologists.

It would just be so great to be able to treat it once and for all. I really cannot wait for this part of the process to be over.

What medications do you take? Is there anything for fatigue?

[jamilea]

My neurologist would have said, "Yes". I'm only sorry you had to wait an additional 6 years. With MS, time is of the essence. I was diagnosed within 18 months of my first concrete symptom.

I was diagnosed on the basis of my MRI's, only; some lesions located in the brain and several on the spinal cord. On seeing my MRI's, my neurologist diagnosed me with MS, and I started Tysabri 6 weeks later. She said I could have a lumbar puncture but felt it wasn't necessary, and I passed.

Kudo's for spending 3 hours in the MRI machine! 30 minutes for my yearly brain is all I can handle!

Good luck.

Thanks for replying. What was your first symptom?

To be fair, it's highly possible that this could've been put to bed awhile ago if I didn't blow it off for almost 7 years. I spent years lying to myself that it was just anxiety or that it would all go away one day. When I finally came out of my denial bubble recently, wow...I really wanted to get back in it and never come out except it kept running away from me.

I cried tonight when my Dad finally started asking me questions about it. Things like "what's a brain lesion?" Etc. It just made it more real I guess.

Yea, I hope I never have to spend that long in that tiny little space again. I did panic in the beginning. I never experienced that in previous MRIs. It felt like a coffin and I had to tell myself that there would be no light on in a coffin. I also had to pray to be able to calm down. Next time, I'm gonna ask for something lol

The medication you mentioned. Are you still taking that? What's it like? Do you experience side effects?

[ru4cats]

jamilea,
I was diagnosed at 58.5, one year after I retired....welcome to the golden years... My only symptom was a weakness developing in my right leg, and to this day, that is still my only symptom to which I continue to develop "work arounds" as the weakness progresses.

With a neurologist appointment in the offing, I encourage you prepare for the appointment in case you do have MS. Learn as much as possible about MS and the various drugs available. Right now, fear of the unknown is your greatest enemy. I am a retired teacher/librarian, and so the acquisition of knowledge is my greatest strength. I continue to learn more about this disease each day, and most of it comes from this website.

If you don't feel ready to accept the possible diagnosis of MS, I encourage you to find an advocate that will learn about the disease for you. It is scary, but believe it or not, now is a great time to be diagnosed. There are so many new drugs, with new ones being approved every few months. I firmly believe MS will become like HIV within the decade--chronic but allowing individuals to live a "normal" life. I also believe stem cells offer the possibility of a cure in the near future.

Follow this link to a series of videos that will help you understand MS. The one on disease modifying therapies and brain cognitive reserve will you give some background. You need to understand what disease modifying drugs are available, which ones have the strongest efficacy (effectiveness), and the pros and cons of each.

http://www.mscenter.org/education/se.../presentations

If you like to read, I recommend The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By 1st Edition by Julie Stachowiak PhD (Author). She has MS and book is a great primer.

After you watch the videos, visit the medication forum on this website and scroll through the various drugs to see what people think. You can read the posts by Marco, Myoak, and jreagan70 by clicking on their names. All have great posts. I tend to be more of the "My hair is on fire!" when it comes to MS because I've learned how critical it is to attack it aggressively.

Good luck and continue to post if you have further questions.

Kris

[jamilea]

Wow, thank you so much Kris for taking the time to post all of that information for me. I will start reading. I actually really love learning and researching so this will be good for me, especially the learning how to manage it if it ends up being a definite diagnosis. For years, I've only read about what it is and the symptoms, the bad parts. I've also read a lot about many many others things that I would rather it to be like anxiety, vitamin deficiency, hormonal issue, or whatever else. Slowly, all of those other could bes (many rational causes and some very irrational) got taken away from me. There is nothing to deny anymore. It's time to read about how to take control.

I really appreciate the support. I will start with their posts. I hope you have a nice weekend