Multiple Sclerosis (MS) Support Group

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rn66g 07/21/2011

I've been on DS for a couple of years now and have been in MS limbo for all of that time. I'm still in that exact same spot and have been trying to ignore possible symptoms and go with what the doctors tell me after they do some tests, "it's all in your head." When I list my symptoms and they do a neuro exam they suggest MS, but then when they get the test results they say my tests come back clear. I've even stopped pursuing any type of diagnosis. Most recently, I've been told I might have IBS. Last weekend, my husband had the opportunity to talk to one of the leading MS neuros in the country. After talking to her for a few minutes, she told him that I should find someone to do an IgG-NMO test and the new test for MS biomarkers. She even said that she was pretty sure I don't have IBS, but that my GI symptoms are more likely due to MS or NMO. Problem is, I am a VA patient so going somewhere like Mayo or Cleveland Clinic is pretty much out of the question unless I can get a referral and use my private insurance. I've had several people suggest that I try going to an MS specialist, preferably at Mayo or Cleveland Clinic, but I'm not sure I want to do that. I'm just afraid of being told by more people telling me they can't find anything wrong and there is nothing anyone can do. I may talk to my GP about this when I see her in a few weeks, but I'm not sure if I should pursue this further or not.

deleted_user 07/21/2011

It's obvious you are scaared, but I don't really think continuing to live like this with diagnosis unknown is going to work for you. You'll be a basket case. I'm assuming they've dont the MRI's of your brain, neck, and spine? The lumbar punctures? Even though you may get a diagnosis you don't want to hear, It's better than not knowing what you have and living your life in a fog. Hang in there, and don't give up no matter what. I know it is hard, very hard, but you have to advocate for yourself and demand some answers. I wish you only the best and will be praying for you.

Amy

lchoppel 07/21/2011

Well, how are you feeling? Are the symptoms interrupting your life? Are you in pain? Can you continue to live like you are currently? If the answers to any of these two questions is no, then maybe you ought to push for seeing a MS specialist. Can you get the VA to support the
IgG-NMO test and the new test for MS biomarkers? You are lucky that you have VA benefits and private insurance, so why not use the private insurance? I would go for it. It has been years you said...

Finding the answer to your problems are needed. As Amy said, Even though you may get a diagnosis you don't want to hear, it's better than not knowing what you have and living your life in a fog.

rn66g 07/21/2011

At this point I would rather be told that I have a disease that I don't want to have than to be told everything is in my head and there's nothing they can do. The one neuro in town that is worth anything just told me to go through the neuro at the VA (who won't even talk to me about my symptoms and is totally useless but is a former office mate of the other neuro). I do plan to ask about the IgG NMO and biomarker tests. I'll see if I can talk them into reinvestigating things but I'm not going to hold my breath and if that doesn't work, I will see about self referring to and MS specialist or see what I need to do to get said referral.

STEVP 07/21/2011

Find a MS specialist, I believve their is one in Boulder. I believe they may even have a MS clinic in Boulder- there are very few of those.

deleted_user 07/21/2011

do not give up! i was told the reason that i was having problems walking was do to overusage, yeah right that makes sense. I was also told I had IBS. I had ms the whole time. and i was afraid for years that i had ms but the drs. were not concerned. keep looking till you get some answers.

deleted_user 07/22/2011

Boy, can I relate! I've been trying for 25 years to find out what's wrong. For probably about 20 of those years I was told it's all in my head. I finaly have Drs who believe something is wrong but so far they haven't found it. I go in next Wed. to get the results of my tests & I am so afraid that I will be told the same thing - "there is nothing I could find". In my heart I KNOW it's MS. I have all of the symptoms & lately going back over my history, that all fits too. Keep looking. It's so hard living like this!

deleted_user 07/22/2011

hi kiddo=i am 57, go to the VA hosp, because i have no insurance and no disability, i have been dx'ed and UN-dx'd, they sent me to seattle for the "cutting edge Doc" yes she definately had a cutting edge to her. i had all these damn trsts and then she says "you may not have MS" i said "crap" only due to the fact that i am now back to square one, but she looks at me and says"oh you want to have ms?, you know that is very expensive meds, that the VA is paying for. so i continued to play her silly test game anbd of course never rec'd any results that my docs could read, i left her a voice mail saying that since i had to come back to seatrtle to HEAR my results, which costs me a buttload of $$, or you just tell me if i should keep taking that very exp med that i am not paying for and i will read between the lines. haven't heard a word, my PA of the last 4 yrs, has up and left, and now i get to do my "song and dance for more "new" people. BTW "alll in your head almost got me killed twice, ovarian cancer at 29. no babies for me, a gallbladder the size of a hot dog bun, and they could not believ i was still working....trust your head and your gut. leslie joan in idaho

deleted_user 07/22/2011

I have a positive MS diagnosis; however, when I went to the MS center, they wanted me tobe tested for NMO as well. From what I u derstand Athena diagnostics is the only lab that tests for that somy blood has been shipped off to them. I received a call from Athena the other day and they sent me some info to sign up for this patient support thing. It essentially costs $110 and if your insurance denies the test or only partially pays for it, that's all you'll pay. The NMO test alone is $550 from what they told me. I don't have my results yet and I've been monitoring my Aetna account online to see how much they pay for the test before I decide to pay $110 but it may be worth looking at especially if the test is not covered. You might ask about that. Just my 2 cents (or $110). ;)

deleted_user 07/22/2011

I think you will find a lot of people here who have gone through what you are going through. I am just starting on this journey to figure out why I can't walk again, but know from my experiences with getting diagnosed with fibromyalgia that the only thing you can do is steel yourself and listen to yourself even when those around you doubt you.

I went to 9 different doctors, all highly regarded and heads of various boards or whatever, who all said they couldn't find anything wrong with me before the rheumatologist said I was a classic case for fibromyalgia with EVERY SINGLE tender point. Doesn't mean the 9 doctors before him were stupid, but they were wrong.

Be your own best advocate to get the help you need! So many people on this board have been working to get a diagnosis for so many years, they all understand. :-)

rn66g 07/22/2011

I'm working on a list of all the various symptoms and tests I've had over the last few years and I'm going to send it through secure messaging to my NP a few days before my appointment that is coming up so that I can give her some time to think over my concerns and see what that does for me.

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