MRI results

Well, this has been an emotional day to say the least.  I had my follow-up appointment with my neuro today.  She said that my EEG came back normal and that I had still only had the two lesions on my brain.  She said they haven't changed over the last two years, since my last MRI.  I can say that my MRI four years ago showed no lesions, so they have occurred since I started having these neurological symptoms.  She said that even though my symptoms follow right along with MS, she cannot make a diagnosis of MS with just two non-specific lesions.  She also said there is still a possibility of lupus and wants to repeat my blood work for that, since it has not been done in two years.  She has also ordered the evoked potentials to be done, and said we will discuss a lumbar puncture once that is complete.  Since the lumbar puncture cannot rule out MS, she is wondering if we really should do it since it wouldn't give me peace of mind either way.  Although my symptoms do seem MS related, she also said they are non-specific, meaning they could be caused by something else.  She still feels it is very possible that I have MS and the lesions are somewhere that is not being picked up by the MRI, but if I do have it, she said it is not progressing quickly and I shouldn't worry.  She said she didn't want to start me on the injections because it didn't look like the disease really needed to be slown down right now, and the injections do cause some unpleasant side effects.  I am starting an anti-seizure drug that she says helps with nerve pain, as well as going back on Wellbutrin.  Then she started implying the anxiety/depression thing.  She began to say that we all have things going on in our body. "God made us almost perfect" were her words.  She said you can either choose to dwell on them or get on with your life.  I got so upset at that point and started crying.  I really thought she was going to be different than the other ones.  Basically, she feels that I do not have a rapidly progressing form of MS, so I should just forget about it and hope it doesn't get worse.  I cannot for the life of me understand that way of thinking.  Ofcourse, I haven't felt healthy for the majority of my adulthood, so I don't know what it feels like to be healthy and smug.  Anyway, I am really no closer to an answer than I was before, and I am feeling very down in the dumps.  In a way, I almost feel like I am being laughed at by everyone, and that is not a good feeling.  I really thought my symptoms had gotten bad enough this time for them to be able to tell me what is wrong.  I would really love to hear from all of my forum buddies so I can perk up a little.  I hope everyone is feeling well today!

Jenn

[Want to feel well!!!]

Sorry your appointment ended with so many things unanswered.  You surely must be frustrated and it seems so unfair.

Refresh my memory, what all has been ruled out?

Wanna

[jenn38018]

Things like anemia, thyroid disorders, sjogren's, schleroderma have been ruled out.  Also, my EMG was normal, so most likely no muscle disorders of that such.  I was diagnosed with RA for six years and then that diagnosis was pulled after I failed all treatments and didn't have any obvious deformities as of yet.  My ANA has been positive with speckled pattern, sed rate elevated during flare ups, lupus titer positive, positive past Epstein-Barr virus, and arthritis showing up on bone scan for the past several years.  The problem is that my symptoms were matching so many different autoimmune diseases there for a while that they couldn't put their finger on which one it was.  I currently have a diagnosis of fibromyalgia, but i don't buy that.  I have too many symptoms that cannot be explained by that.  It has been since the neurological symptoms got much worse and much more specific to MS that we really started looking into MS.  I am so confused I don't know what to think.  I know I have something, but i may never know what it is.  I know there are many of us out there, and I just pray that research on these issues is speedy and fruitfull.  Thanks for the words of encouragment.  By the way, how are you doing?

Jenn

[jenn38018]

Thank you.  Yes, they are scheduling them as soon as they get the precert from my insurance company.  Sometimes that can take a couple of weeks, so we will see.  Hope you are doing well.

Jenn

[jenn38018]

Sorry, I forgot to mention the main thing that got me going with all of this in the first place.  When I was twenty they tested me for rheumatoid factor after complaining of fatigue and joint pain.  It showed I had highly elevated RF.  I have probably been retested for it about twenty time over the last nine years, and it always comes back highly elevated.  That is when they sent me to a rheumatologist and this whole lovely adventure began.

Jenn

[6-paq]

I'm so sorry that you were not able to get some definite answers.  I can imagine how frustrated you are. :(

I am hoping that the evoked potentials can help shed some light on what's going on with you.   Are you getting those done soon?

Don't know what to think about not starting the meds yet.  I'm curious to see what Quix thinks about that.

Prayers that you soon get some answers and feel better!  Pat

[Want to feel well!!!]

If your Lupus titers are positive, ANA positive, elevated EBV, why hasn't anything been done?  I am truly confused on your behalf!

Are you on any medication other than antidepressants?

Wanna

[Want to feel well!!!]

When you go for your appointments, do you go alone or does someone accompany you?  My husband went with me to my last neuro appointment, and I believe that helped the doctor determine more about my case.  

Wanna

[jenn38018]

Join the club, I am about as confused as you can get!  I think that I haven't found the right doctor to put the peices of the puzzle together.  I really don't know if I ever will find that person.  I keep thinking that this next doctor will be the one, and they never are.  No, I am on no other medications.  I have developed a severe hypersensitivity to almost all types of medications, so I have to be careful of what I take.

Jenn

[jenn38018]

My mother went with me to this one, and she got really upset when the doctor started in on me just trying to forget about my symptoms.  She herself has schleroderma and fibromyalgia.  It took her over ten years to get a proper diagnosis, and by that time she was already disabled.  She knows exactly what I am going through, and I think it struck a chord in her today.  She is so worried about me, and I feel bad for that.  The neurologist saw how upset we were both getting and tried to defend her statements at that point.  My mom asked her a couple of questions and then just shook her head.

Jenn

[grannyhotwheels]

Jenn,  First of all I am so sorry that you have to go through all of this.  My heart  breaks and bleeds for you.

My doc. told me that I had auto-immune disease and since everything that can be checked by blood test has come back negative then it's just the process of elimination to determine weather or not it's MS.  Which finally after 4 years mine did.  Also, I cannot believe that your doc. thinks that just because your disease is not rapidly progressing that you should'nt treat it is bull.  The quicker you start getting treated the less damage you will have (if it works).

I'm not sure you can understand what I'm trying to say or not, and I apologize for that, but like always what I'm trying to put on paper is sometimes not what is coming from my brain.  I think that my hands have their own brain.lol

I will pray for you and I would go to a specialist in auto-immune diseases or MS if you already have'nt.

Carol

[jenn38018]

Thank you for your sweet words.  I perfectly understand what you are trying to say.  The thing is, this neuro is supposed to specialize in MS.  That is why I was so excited about seeing her.  I was really shocked at her attitude during my visit yesterday.  It seems that now she is just going through the motions of performing other tests on me just to apease me.  I need somebody in my corner that is motivated to solve this puzzle for me.  Now that she has said what she did, it has just fueled the fire when it comes to my family as well (mostly my husband and in-laws).  Everyone thinks that I got great news yesterday and that I should take her advice and just forget about it.  I feel like I am fighting a battle I cannot win, and to be honest, I am almost ready to just throw in the towel and just be sick.  It is so draining going through all of this.  My mother is the only one that understands what I am going through (and ofcourse you guys!).  I have seen docs from every neurology and rheumatology practice that is approved by my insurance in Memphis, so now what do I do?  

Jenn

[doni54]

I am really sorry that you didn't get a dx. I still haven't made it past the GP, been waiting almost 2 weeks for results of blood tests.

When I read all the posts of what all of you are going through I really dread the process.  I have been living with these problems for so long and not actively seeking a dx, sometimes I feel like I am too worn out to go thru with all the frustration.

I've been working on my timeline for the past 2 weeks trying to tighten it up.  This has proven to be a task since I have been having symtoms (symptoms) for such a long time. I also have so many symtoms (symptoms) that never go away and are with me daily.  It might help if I could get my brain and hands to work as least part of the time.

I have never been one to give up, and I know with a dx that some of the drugs could slow these symtoms (symptoms) down, but sometimes I just don't know.  I guess I'm a wuss cause I haven't been to as many drs or had as many tests as you and still I am complaining.

The depression and denial that comes with these symtoms (symptoms) is sometimes hard to fight.  I am so glad I found all of you cause I know you can identify with how I feel. Sometimes I read posts and just have to have a good cry, like right now. I wish I could give everyone a hug cause I think they need it.  Consider yourself hugged, Jenn - and everyone in need of one.

I'll make a deal with you Jenn, you don't give up and neither will I.  With all the support here on the forum I believe each and every one of us can pull together and keep each others spirits up.  I have seen this many times already since I have been on this site. There are some wonderful people here who are always willing to help no matter what the problem or question.  All of you have been a God send to me, I don't know what I would do if I didn't have all of you to talk to.

Jenn, please keep your spirits up and don't give up, you will find the right dr who will be the support and help you need.

Doni

[jenn38018]

You are so sweet.  I definitely felt the hug!  You are not a wuss in any way!  The process of trying to get a diagnosis is so draining, even the strongest of people would crumble at some point.  I am feeling better about everything today.  You have yourself a deal on not giving up.  We will keep leaning on each other and push through this.  God bless!

Jenn

[Quixotic1]

Oh, hon, as I read your note I didn't get the same impression as you did, but I was not there and didn't feel where she laid the emphasis on all the things she said.

First, I was not ignoring you, I had been waiting for so long for this visit, like you.  When you posted I let people pour in their support of you and figured I would answer today since you would not be feeling that much better and continued words would help.  

All of your first words about the visit made a kind of sense.  Have you had the spinal MRI's?  I wish I could remember.  If not, they are the next appropriate ones.  If you did and they were more than 6 months ago they should be repeated on the T3 machine.  It seems like you mentioned that that was the machine she used.  Remember, my spine went from "negative" to 6 lesions - old ones - just changing machines.

You said she still feels like you have MS, but SHE doesn't feel two "nonspecific" lesions that haven't changed in two years are enough.  I actually diagree with her.  Of all the people who post here, I have felt that you were in thr group most likely to have MS.  Some I don't know, some I feel some doubt and others a lot of doubt.  However, it really is not my field - yet.  I know MY neuro would be impressed by 2 lesions and your history.  

I need you to refresh my memory.  Would you bump up your timeline to the top - or put it on if you haven't posted it on the forum.  I now have exceeded my memory of all my good friends' histories.  

From your first several lines I got the feeling she was hoping and - clearly expecting - to see the evidence she needed on this MRI.  When she didn't, she entertained the idea (probably for the first time and possibly not with any conviction) that it wasn't MS, though God only knows what else it could be.  Perhaps she brought up the A/D issue as preventative strike.  If everything eventually comes back negative, you would have heard the words once.  Her plan to to evoked potentials and consider an LP do not sound like she has dismissed you.  I don't think she would plan costly tests to appease  you.  

It sounded to me like midway through your post  you convinced yourself that this was another dead end and the rest of the post sounded like all the earlier frustration and sense of humiliation had washed back over you.  Partly this is a self-protective measure to shield us from such intense disappointment that your answers haven't come yet.  But, I think they are just delayed.  Her words about "dwelling on things" may very well have been to try to help you through the delay neither she nor your foresaw.   I have been in her position and you try to say something to give hope or help while you head down a new path.  Did her body language dismiss you?  Did she stand up and walk away?  Even women doctors, who have to be very emotionally strong even now, may have trouble with a newly crying patient.  And she may have seen sudden tears as the eruption of depression rather than the intense disappointment it was.

I think continuing to gather evidence with EP's and, yes, an LP, is the right thing to do.  One more piece of evidence is likely all it will take to tip her on over.  Yes, the LP might be negative.  At diagnosis at least 25% are, but it might also be positive.  I was a little disheartened that you understood her to say that there wasn't anything on the LP that could change her mind.  If that is her stance, well, I would want her to clarify that.  You can ask her about that after the EP's.

As far as the urgency to make the diagnosis.  You have some time.  A few months won't make that much difference.  I know people here push the urgency, and I agree

In the meantime, start the new med for the neuropathy pain.  It will likely help you to feel better. Get the EP's, and an LP when the time comes.  Let me know whether you really thought she was dismissing you or just saying some things to fill in the gaps and trying to tell you to have strength for the continued search for information.  If you get back more evidence that points toward a diagnosis, and she still won't act on those two lesions, or you feel that she is no longer interested, then you move on to someone else with the additional information and the two lesions.  How does that sound?

Now, I have been meaning for days to write something about your falling.  It's getting late, but I'll try to do it.

(((HUGS))) and more (((HUGS))) from Quix

[pennst8r]

I am so sorry that you still have no answer. I do feel that you are probably closer than you think. Don't give up. Take Quix's advice, build up your reslove and keep fighting. I think you'll have your answer soon. We're all pulling for you.

Penn

[Quixotic1]

Hi, Kiddo,  I didn't complete a sentence up there about the urgency to get treated.  It is urgent to begin therapy once you get a diagnosis, but "urgency" is a relative thing.  Beings that the MRI does not look "demyelinating" to the specialist, then it is appropriate to gather more evidence.  I think a couple months of diagnostic testing is fine, though hard on you, and if the "well of interest" on the part of the doc dries up, then we'll move on.  That's what I meant to say.  Quix

[jenn38018]

Thank you for your post.  I didn't think you were ignoring me, just thought you had gotten busy with our online family growing so quickly.  I know I haven't had the time or energy to post to everyone like I want to.  

Reading this neuro is very tricky.  At the beginning of the appointment she seemed like she still thought it could be MS, but that the fact we have no evidence except for the two lesions which have not changed tells her it could be something else.  She said all of my symptoms fit MS, but they could also fit other things.  Then she went into talking about the fact that I really shouldn't worry too much, because even if I do have MS, its not a bad form of it because I only have two lesions and nothing showed up on my EMG.  I told her how concerned I was about he falling and that i might become disabled if I continue to go untreated for what is wrong with me.  She said that she didn't see me ever becoming disabled with this, and that the nerve/muscle study showed I do not have muscle disease.  She seemed to be saying that she didn't think my falling was because of whatever disease process is going on, but yet, just one of those things that happens.  She said, "We all get headaches, but to say that they are being caused by a disease is a stretch of the imagination."  At that point she started implying that I was making more of my symptoms than what they are, and that I should try to not dwell on them so much.  I started getting really upset at this point.  I told her the symptoms have gotten so bad that they are impossible to ignore.  That is when my mom piped in and told her that I am like a different person when I am in the middle of a flare up.  I then explained to her that I can definitely tell that I go into flare-ups for about 3-5 months and then will be much better for a year or so.  I said that I still have joint pain, stiffness, and pain in between those times but that it is nothing I haven't learned to just handle.  I tried to explaint that when the flare up happens it is so debilitating that I don't want to leave my house on certain days.  My mom and I both told her that I am usually a very outgoing person who loves going and doing.  I cannot stand to sit idle, and I get "cabin fever" easily.  When I am having a flare up though, it is like night and day.  She asked at that point if I had sleep apnea or trouble sleeping.  She started trying to come up with any other explanation for the fatigue I was telling her about.  She asked my symptoms get better or go away when I am on my Wellbutrin (I have been off ever since these symptoms started because my rheumatologist and I wanted to make sure the symptoms weren't from any of my meds).  I told her that the Wellbutrin helps me to cope with the symptoms better, but that the symptoms don't actually get better while on it.  I then stressed that I know without a doubt that the anxiety and depression is caused by the symptoms, not the other way around.  When she saw me getting visibly upset she stood up and started walking toward the door.  She stayed standing by the door until I finished talking with her.  The entire visit, she acted extremely nonchallant, no expression on her face.  She would shrug her shoulders from time to time like "what do you want me to do?", and that was about it.  She didn't seem like she was very eager to do the LP.  I don't really think she expects to find anything on it, and she knows that if we dont, it still won't satisfy me.  I think that if the EP's don't show anything, she will probably not do the LP.  I think she is only doing the visual evoked response.  She did not order an MRI of my lower spine, just my neck (even though I asked her to do that at my initial visit).  She said it is possible that we missed some lesions in that area, but she doesn't really think that is the culprit because my numbness has been in my face too, not just my arms and legs.  When we were talking about the possibillity of it being lupus, I asked her what the odds were of someone with all of my symptoms to have blood tests showing ANA positive/speckled pattern, positive lupus titer, elevated sed rate, positive EB antibodies, elevated RF, two lesions on two consecutive MRI's and it all be completely benign.  She said that the chances of that happening were actually really good.  She said you can have elevated sed rate just from an insect bite or a cold.  I asked her if she really thought that was the case over an eight year period happening so frequently and going along so closely with flare ups, and she just shrugged her shoulders.  I understand that any of these tests can have false positives in a healthy individual, but I just don't buy the idea that I have all of these abnormalities along with my very real symptoms and me be disease free.  That is what she was implying.  Then she started talking about the fibromyalgia.  I told her that fibro could not cause the things like muscle contractions, ringing in ears, hearing going in and out, hand tremors, frequent falling, muscle twitches, tight banding feeling around waist, etc.  She again shrugged her shoulders.  I almost felt like I was having to convince her I was sick the whole time.  It really felt weird being as she began the visit saying that it was still a possibility I have MS.  Then she started telling me that even if I was diagnosed with MS, there isn't much different she would be doing than what she is now.  She said she didn't feel the disease was progressing, if I did have MS.  I told her that my symptoms were definitely progressing fast, and new ones were popping up every day.  I quickly saw that she was one of those neuros that relies heavily on MRI's and not much else.  

I don't have a timeline online yet, but will get it on as soon as I can.  I typed out a pretty good explanation for someone else on the forum under my thread "hello, I m back".  You can look at that for now if you want.  

I definitely want to talk to you about the falling.  Also, I know I have been telling everyone that I have been having the Braxton Hicks-like contractions, but that they aren't painful.  They come in successive waves and last for about 30 min to an hour.  Well, the night before I went to the neuro, I laid down to go to sleep, and all of a sudden felt this really tight band around my waist and abdomen.  It kept getting stronger and would not let go, like someone was squeezing me as tight as they could.  It started to get slightly painful, and was definitely uncomfortable.  When i told my neuro about this, the falling, the ringin in ears, the hearing goin in and out, and the cold prodding feeling on my legs when I walk outside into the heat, she looked at me with a puzzled expression like none of that fit with what was going on with me.  I didn't understand why, if she deals with MS patients on a daily basis, she wouldn't know that those symptoms tie directly into MS.  

Last thing, and then I really must stop typing.  I have no other specialists/neuros in my area that I can see.  I have been to all of the groups here in Memphis, and they will not allow you to see one of their other doctors once you have seen one.  Same thing with the rheumatologists.  I have tapped out the supply here.

Thank you for the millionth time for all of your support and advice.  You are well loved.  I hope you are feeling well this week.  Have a good and restful weekend.

Jenn

[jenn38018]

One more question.  When I first started having the neurological symptoms four years ago, I was quickly given an MRI and it came back clean.  Then two years after that, when I had my second flare up, I was quickly given another MRI.  That one showed the two lesions.  Now, I am having my third flare up two years later and was given another MRI.  This one still shows the same two lesions and nothing else.  Is it possible that my new demylenating activity is too new to show up on the MRI, and that what is actually showing up is old lesions caused by the previous flare up?  Does that make any sense?

Jenn

[jenn38018]

Thank you so much!  Hope you are doing well!

Jenn

[Quixotic1]

Quicky answer.  New lesions should show up as an enhancement on the images done with contrast.

The 2 lesions that continue to show would be (in the context of MS) old lesions which have scarred.  They do not have to change in a one year period.  Your symptoms speak to something more active going on.  My fear is that every specialist is going to point to the one on the right as the specialty that needs to deal with you.

Yes, She was dismissive of you.  Nicely painted picture.  Have you thought about writing as a career?

As a way of taking up the dare, you might ask for limited neuropsych testing to tease out the role that anxiety or depression may be playing here.  If it shows a significant amount then you can address that.  If it shows that any depression is secondary then you have that to lead off with when you see another specialist. It becomes ammunition on your side.  You may need to travel outside Memphis.  I know that is a horrendous burden, but it may be very neccesary.  How many hours is Vanderbilt?  (I've always had a fondness for them becasue they accepted me into med school, lol.)

More later, Quix

[jenn38018]

Thanks for the answer.  I don't quite understand what you mean by the one on the right being the specialty that needs to deal with you.  Yes, I thought about writing for a while!  I actually was the asssistant editor for my college newspaper the first time I went to college when I was seventeen.  

I wouldn't be opposed to driving to Vanderbilt, it is only a two and a half hour drive from here, and we are considering moving to Nashville once I graduate nursing school anyway.  I'm just not sure how that would work with my insurance.  I have Blue Cross Blue Shield of Tennessee.  I have to get to class now.  I will check in later this afternoon or evening.  Thanks again!

Jenn

[Quixotic1]

It was a poorly done joke.  Reading your posts I get the picture of all your doctors stand in a circle, looking mystified and all pointing to the "one on the right" as the one who needs to figure this all out.  Sor of a "don't look at me!!!"  Sorry if I mystified you.  Quix

[faitho]

Jenn, I would seek advice from Vanderbilt's MS Center.  In my 10 year search for a diagnosis of MS, I saw a dr there (Moses) and loved him.  He actually did tests and found I had had Sjogren's Syndrome (for years).  No one else had even listened when I said I had dry eyes/mouth.  However, I didn't leave there with an MS diagnosis, though, only another "maybe", but either way this Dr. was excellent in my vast experience with neurologists.  So now I'm off to Mayo.................

[jenn38018]

Nice to hear from you.  I don't think we have ever spoken on the forum before.  Do you live in Tennessee?  Whas the doctor's last name Moses or his first name?  How did it work with your insurance going to Vanderbilt?  Sorry for all of the questions, just curious.  They actually thought I had Sjogren's Syndrome for a while but all tests have ruled it out.  I know it can be a irritating disease though and can lead to more than just dry eyes and mouth.  I hope you are staying on top of it.  Are you going to the Mayo Clinic on your own, or have you been referred?  What are your symptoms?  Ok, now that I have drilled you, I will let you breathe.  Look forward to hearing from you!

Jenn

[jenn38018]

I got ya now!  You are right though, they are all waiting for the other one to figure this out!

Jenn

[faitho]

Hey Jenn,

No we haven't spoken, I'm new here.  I live in KY.  The doctor at Vandy is Harold Moses.   My insurance is great -- I don't have issues going elsewhere, my co-pay is just a little more.  I see a rheumatologist for the sjogren's but wonder if the white spots (lesions) on my brain are actually neurologic involvement from the SjS.  The rheumy is way conservative and says that's very rare and actually leans more toward MS for that.  I'm going to Mayo on my own, although my neuoro would refer me if I asked.  I don't have a lot of symptoms right now that I can actually attribute to MS.  I've had lots of weird stuff over the years. In 1993 and 1997 I had 2 major attacks of vertigo which I thought was an inner ear infection.  But I had balance and gait problems (still do) and lost app. 40% of my hearing in between those 2 eipsodes.  I never saw my neuro until I was through the worst of the 2nd attack.  My ENT ordered the MRI and set me up with the neuro.  I had number (more than 20) white spots on my brain.  I have been trying to learn for sure what those are for 10 years now.  I have seen drs. in Cleveland, Vanderbilt and UK and they all say maybe, while my neuro where I live says I have MS and has offered me meds for years.  But, I'm hesitant to take meds for something I'm not yet conviced I have.  I do have lots of health issues, along with the SjS.  I have IBS, the aura from migraines (without the headache) and have just found out I have degenerative joint disease (back) and my vision has gone south and can't be corrected (although I have never had ON).  I just want to learn what I have and deal with it.  I'm 48 now and worry that if it is MS, then I'm not on meds and it is starting to progress from the "benign" stage to a more progressive one.  BUt if the spots are not MS and I take meds for MS, then that's wrong too.  It's a viscous cycle for sure.