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Old 09-26-2016, 02:07 PM #1
cola1016 cola1016 is offline
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Default New here, just looking for some feedback

Hello all,

I'm in what I think is called "limbo land?"

August 3rd I got an MRI with/without contrast done which was ordered by my PCP. I was suffering from a wide spectrum of symptoms that I was worried could be thyroid issues. My PCP insisted my thyroid was fine and when I mentioned my breasts leaking in addition to my constant headaches, he insisted on getting the MRI done. He was suspicious of pituitary adenoma.

I get the MRI done, results come back that I indeed have a microadenoma, but in addition there were lesions of concern.

High T2 and FLAIR signal intensity foci in the white matter, 2 of which occupy periventricular location, one of which (the right temporal lobe lesion) enhances on postinfusion sequences concerning for MS. Neurological consultation and additional MRI brain surveillance are recommended.

So, I see the neurologist, he tells me that my lesions aren't typical of an MS patient so he wanted to do a LP to check for obands. He stated at that appointment if I had obands that I would likely be diagnosed with MS.

Fast forward to September 2nd. I get the LP done. Results come back as follows;

Isoelectric focusing/immunofixation reveals two or more
unique bands in the CSF with no corresponding bands in the
serum. There are also identical bands present in both the
CSF and the serum. This is consistent with intrathecal
synthesis of immunoglobulin and is considered to be a
positive result for oligoclonal bands.

The other results;
IGG CSF 1.2 mg/dL
ALBUMIN CSF 9 mg/dL
IGG SERUM 1170 mg/dL

ALBUMIN SERUM 3830
ALBUMIN INDEX 2.3
IGG SYNTHESIS RATE CSF <0.0 mg/d
IGG/ALB RATIO CSF 0.13
IgG Index 0.44

So today was my followup and he tells me that although I was positive for 1 test (I assume he was talking about the obands) he can't diagnose me with MS or anything else for that matter. So I have to follow up in 3 months to get another MRI and see if there has been any progression.

Is this the typical story for most people? Of course I do not want MS, but I also don't want to be the mystery case. Tired of having symptoms on and off, feeling good for a little while and going back to feeling crappy. It's so frustrating, I just want answers
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Old 09-26-2016, 10:04 PM #2
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I would get another opinion!

Sounds like this neurologist says one thing and does another. I'm sorry you are going through this.
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Old 09-27-2016, 10:20 AM #3
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First of all, welcome to NeuroTalk.

MS is a hard disease to diagnose. Elimination of a lot of copy cat conditions must be done before you can successfully diagnose MS.

http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

I'm confused as to why your Neuro ordered an MRI without contrast. Your next MRI should be with contrast....especially if there were "areas of concern" to your Neuro.

http://www.ehow.com/facts_5896015_mr..._source=IACB2B


I hope you get some answers soon. Please let us know how you're doing.
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Old 09-27-2016, 03:22 PM #4
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Sorry, my primary care doctor ordered the MRI - with and without contrast.

I'll be going for a 2nd MRI in January which will be ordered by the neuro.

I wish I could get to a MS specialist but the insurance I have does not allow me to go wherever I choose
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Old 09-27-2016, 07:39 PM #5
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Quote:
Originally Posted by cola1016 View Post
Sorry, my primary care doctor ordered the MRI - with and without contrast.

I'll be going for a 2nd MRI in January which will be ordered by the neuro.

I wish I could get to a MS specialist but the insurance I have does not allow me to go wherever I choose
Maybe a referral from your PC or Neuro to a specialist would help? I know my insurance insists on a referral before approving anything.
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Old 09-28-2016, 11:38 AM #6
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Welcome to NT!

There are many people who are in limboland. I am sorry you are now in limboland.

The criteria for diagnosis has changed and recently many doctors are being more careful in diagnosing MS. They have found that people have be diagnosed with MS, started medication and later on it was discovered that they don't have MS but something else. Someone on the board posted an article about it and it was true. I have been diagnosed for 10 years, took medication for MS, and now my new neuro isn't 100% sure that I actually have MS. I do have the lesions and several of them are in the right spot and I have clinical symptoms but I have not had any new lesions in a number of years. He explained to me about people being diagnosed with MS and finding they don't really have it. He is a nationally known MS specialist and has trained many MS specialists so I do trust his opinion. For now, he is keeping the MS diagnosis just in case and I follow up with him every few months with yearly MRIs.

Keep track of your symptoms (date, how long they lasted, what they were, etc.) so that you can bring it to your next appointment. Obviously, if something major happens definitely call your neuro.

Keep us posted on how you are doing and if you have any questions. You will find the people here very knowledgeable and helpful!
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Old 09-29-2016, 11:35 AM #7
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hello & welcome to NT,

i agree with the other's advice.

you could wait to have the 2nd MRI to see what that shows, then get a 2nd opinion. or, you could get a 2nd opinion now.

if you call your local MS society at 1-800-FIGHT MS they can direct you.
make sure you get copies of the MRI & test results. get a copy of the MRI disc.
all this is to make sure you can bring records to anyone else you see. and, it's a good idea to start a medical file on yourself. you will find that very helpful.

best of luck.
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Old 09-30-2016, 01:16 AM #8
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A second opinion is certainly a good idea. However, though your neurologist said that if o-bands were present then you would likely get the dx, but it's a number's game with the o-bands where if I remember correctly it has to be greater than 5 present and then of course there's the ratio on the albumin and igg. That is the portion that he may have felt was more indicative of MS over the o-bands where the presence isn't great enough for a dx even if the lesions.

And it is crappy being in the limbo land. I spent 10 years there as have a lot of folks, it's just a really tricky disease that has no set symptoms or even progression chart that you can follow, and it's not the only disease out there like that making it even more fun for our doctors to decide which tricky one you may have since I assume they've looked at all the easily testable/viewable ones. Now you're into the void where it feels like doctors are just spinning a wheel and tossing darts at it to guess the next possible dx.

But as has already been suggested, keep track of your symptoms, don't hesitate to contact your neuro if any new symptoms arise, and pretty much be the squeaky wheel as much as you can. Don't insist you have a particular dx, but force the doctors to give you a proper dx, and just be ready for a potential long haul while praying that the next test holds the answer.

We're all here for you no matter what your dx ends up being or how long it may take to come in.
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Old 09-30-2016, 03:20 PM #9
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hey starz. i was dx'd in '03 & was told then that 2 or over on O-bands was diagnostic of MS. has that changed?

is the McDonald Criteria still done or has that been changed?
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Old 09-30-2016, 11:01 PM #10
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Neither of my neuros followed the McDonald criteria... But my when I got my LP done the test did say equal to or greater than 5 o-bands was what they considered positive.
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