How can I convince them that I KNOW it is MS?

[kamdiggity]

Hi all. I am new here. So here is the story... about 9 years ago, I woke one day unable to talk, couldnt move my mouth much, couldnt blink, etc.... I saw a neurologist who ruled it bilateral bells palsy. After it didnt get better 4 months later, he began to question if maybe I had MS. Honestly, I had barely even heard of it and knew nothing about it. He did a LP and I got other MRI's. It came back and he said he felt that I did not have MS, that it truly was just a bad case (he told me it was the worst he had ever seen) of bells palsy. So fast forward to October 2011: I began having the worst headaches! I have never been prone to them. I got dizzy, nauseated, and the pain was stabbing. I began having temporary blindness in just my right eye. It lasted maybe 10-15 minutes each time. I began sleeping 12-16 hours at a time and was still incredibly fatigued. I went to the ER and they did and MRA and CT and this neurologist enters my room and says "well you have a small hole in your brain" and basically that was it. Okay, seriously? I work at this hospital where I was, and I knew the resident. They told me to call my psychiatrist. I had vertigo, I began falling and now have a small crack in my left hip. My right hand and arm get numb a lot (the outside part) and after walking maybe a block, my legs feel so heavy and weak. My headaches are gone, but everything else is there. I have pain in my arms and right leg that feel like I am being attacked by an electric eel. My PCP and I talked, and we agreed that it could possibly be MS. Last week, I got an MRI of my brain and spine. I have access to my own chart because I work at the hospital where it was done. I read the preliminary report. I googled most of the key terms and phrases, and it all led back to MS. My pcp sent me a message after I messaged her about the report. She said that it is not MS, and that I should talk to this neurologist I have to see on Tuesday. Still, every symptom I have has one condition in common. MS. I am so tired. Tired of being blown off and told to see my psychiatrist. Yes, I have anxiety. Life is full of anxiety. THIS IS NOT ANXIETY.  I am frustrated. What you you all think?

[Guitar_grrrl]

All of the above advise is good.  I would also go see a psychiatrist, preferably a neuropsych, and get proof it really isn't in your head (or IS as the case may be, if you catch my drift...).  One more piece of the puzzle solved.

Be careful snooping in your own medical records - it can get you FIRED!!  It's happening to medical personnel more and more.  I just ask my neuro for photocopies of my records, and he's happy to provide them.

I'm sorry you're feeling so cr@ppy.  I hope you find answers soon.

[Sumanadevii]

Another bit of advice, I would not allow the neuro to give an appointment six months or a year out after the first visit.  I would be vocal in telling him/her that you know something is seriously wrong and would prefer an appointment every three months until they are able to figure out what IS wrong.

[Sumanadevii]

It is indeed possible to have MS without lesions showing on an MRI.  Here is a post with an answer from our resident physician Quix (although unofficial doctor of these pages...You will find many of our health pages written by her).  She herself at one time had no lesions show yet had MS.  If given time I could find it in her words or other posters speaking about it.

I was able to find a thread where Quix speaks about lesions not showing and giving links to health pages you may find helpful.

http://www.medhelp.org/posts/Multiple-Sclerosis/Lesions-and-MS/show/1420329

I do however agree with other posters that it is unwise to TELL a neuro that you have MS.  It is best to allow them to dx you.  I would bring it up after a few visits if he/she does not...asking them to explain why you do not have it because (insert answer) you know someone that does have it, you read about it, etc.  

I wish you the best of karma in finding an answer.  For nine years I knew something was wrong with my body and seriously so.  I had never read about MS until six to three months before my dx.  I wish I had!!!  I would have gone for opinion and not sat with an idiot for a neuro.

[kwarendorf]

Typically MS patients have demyelinating lesions in their brain, c-spine or both. The lumbar puncture results of many with MS show oligoclonal bands in the cerebral spinal fluid but not in the serum (blood sample taken at time of LP.) Most have also had a battery of blood work to rule out other things that can mimic MS. The clinical exam and symptoms are just pieces of the puzzle.

You don't give specific findings of your MRI and LP, just that based on the findings your doc did not think you had MS. While there are cases of people having MS with clean lumbar puncture results, I'm not aware of anyone being diagnosed with lesion free brain and or c-spine MRI's. I'm not sure I have ever heard of anyone being diagnosed that has both clean MRI and clean LP results.

Can you give us some more info on your previous MRI and LP?

Kyle

[sllowe]

Kimd,

How do you know you have MS?

[supermum_ms]

Unfortunately this isn't a question easily answered, i'm not even going to touch on if your sounding MSish or not because you haven't provided enough info eg MRI findings etc. What i will ask though is whats the problem with discussing this with your psychiatrist? At least if its not all related to a mental health issue, you'll have the evidence to shut that idea down and if it is then you can work from there.

To be honest the very idea of a lay person trying to convince a specialist of anything would be a giant red flag for them, its just more likely to cement the mental health angle, I so wouldn't recommend it!

MS is like a collection of this + that + this + that, basically for RRMS an established pattern of recuring/remitting symtoms occur, they are unique to the individual but collectively it all adds up to a commonality that makes it MS. For an acurate MS dx the diagnostic criteria must be met (see health pages for Mcdonald criteria) otherwise it could be one of the MS mimics.

Try not to get your self into a singular focus on MS, its not going to help you any in the long run. If you can, try to relax because it can often take years for people to get diagnosed, it could be even more frustrating and exhausting jumping through all the medical testing hoops trying to find the correct answer to your puzzle, so do your self a favour and keep your mind open to the possibility of a long dx journey that still may not lead to a dx of MS.

Cheers.......JJ      

[jujuminx]

Wow, you have really experienced some challenging physical issues. I am sorry, it's terrible to feel so bad and not have the answers you need.

You didn't actually say what the report said?!  What did it say? You said you picked out phrases and key terms and got MS via google on those yet the report didn't conclude you have MS?! What did it conclude?

Google tingling, numbness, electrical shocks, etc, and you will get MS but that doesn't mean that the sum total of those sx IS MS.  You could have a lot of things that are causing multiple problems and multiple sx.

It doesn't mean you don't have MS, just that it's not that simple. Sorry. So, I would strongly advise you to go to the neurologist and go over the report until you are completly comfortable. If not, and even if you are comfortable, take it for a second opinion.

The one thing I would advise you not to do is tell them you KNOW you have MS. As strange as this may sound to you, that will most likely make them dig in their heels and lead them to believe you have some sort of anxiety disorder.

When I  went in to see a third neurologist in 18 yrs I was careful not to tell him I thought I had MS (thanks to the advice I got on this board). I gave my medical history as well as I could w/o too much overdescribing, the tests I had, etc. He performed an neuro exam and looked at all my previous MRI's.

Even though all my MRI's were clear, HE eventually said he thought that I had MS and told me how he was going to dx it. Within a week he dx me with MS based on what he saw on my spinal MRI and what the radiologist's report said.

I seem to be saying this a lot on this board recently but please let this play out with the neuro and dr's. You have an appt on Tuesday. Go with an open mind, listen and ask questions. You are almost there. When you hear what they have to say, come back here and let us know.

At that point I am sure we can better help you go from there. Sorry if this isn't the answer you were hoping for but I do speak from experience with myself and from watching others on this board.

Good luck!

Julie

[Lulu54]

Hi and welcome.  What do I think really doesn't matter and holds little weight.  What matters most is that you think there is something wrong with you and you are going to have to push hard to get answers .  Don't let the doctors dismiss you when you know there is something going wrong in your body.

That first attack, with the loss of speech really doesn't fit the profile of MS from what I know, but I am no expert.  I am curious what the neuro meant about the "hole in your head."  Was he trying to be entertaining?  Or did he really mean they saw a hole in your brain?  (I have black holes in mine!).

Your symptoms sound neurological but only a full exam and followup will determine its source.  IT is incredibly frustrating to not have answers - I hope you get some soon.

In the meantime, I hope you'll hang around to ask questions and learn more about MS.  It can be a very difficult diagnosis to make.

best,
Lulu