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New Here -- Intro (long)
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New Here -- Intro (long)

I am new here.  I have been lurking and reading for a few days.  I am not sure if I am writing my intro in the right place.  I apologize if not.

I just wrote out my history and my question, but it was too long.  I'll try to do an abbreviated version.

I have been sick since 1995, and in 1996 was diagnosed with Chronic Fatigue Syndrome and transverse myelitis. I had an episode of optic neuritis, and a positive Babinski sign.  I have had problems with walking that comes and goes since that time.  I went about 5 or 6 years with very little problem aside from fatigue if I overdid things.

Then in 2004 I had an episode of limping that lasted around a month or so.  Then the next one was in 2006, about a year and a half later.  That one put me in the hospital, because my arms were also involved and I was having trouble breathing.  The neuro there confirmed the TM diagnosis.

Then I started going to my current neuro.  But in 2007 he told me that whatever I had it was not going to progress and since there was nothing he could do in the way of treatment, that there was no need to keep coming back to see him.  So I did not go back.

These episodes started coming twice a year, and now in 2010 I had one in May, one in October and again in December.  Although, I never did recover completely in between so they may have been one long episode.  I also developed bladder symptoms with the May episode, which I had never had before.  And now I wet myself all the time, which I never had a problem with before.  I also had to buy a walker, because the cane was not enough and I was falling.  But, the walker is really not enough either, because of the weakness in my arms.

So I went back to the neuro.  He referred me to the counselor at the MS Center, because I told him I thought stress from some family issues may have contributed to my TM symptoms getting worse.  

The counselor had a look at my chart in the neuro's office.  She said my diagnosis is "weak legs" and that this neuro never did agree with the TM diagnosis, but wants to be "absolutely sure" before he ever diagnoses MS.  So, then I thought that he must believe I have MS but just won't tell me.  That was when I started looking for info on MS and found this board.  I was astonished how I found myself and my experiences here.  So much moreso than on the TM boards.

This was the first time I had an MRI of the entire spine. They never notified me of the results, so I called.  He had his receptionist call me back with the results.  It showed I have mild arthritis in my neck.  Other than that, it is normal.  He wants me to come back in 4 months.  He has never told me what he is thinking at all.  All I have to go on is what the MS counselor said.

I feel confused and discouraged.  This has been going on for years.  What does he expect to see in 4 months that he has not seen so far?  He would not have even gotten images of the spine if I hadn't asked him about it.  He does not tell me anything, and it doesn't seem to be he tries very hard to find out what is the problem or to help me with my symptoms or to preserve functioning or anything.  When I talk to him I feel about 2 inches tall.  I think I am just an annoyance to him, and he certainly is to me!

I would like to find another doctor, but I don't know where to go.  He is the only MS certified neuro in my state.  Should I go back to the guy who diagnosed me with TM 16 years ago?   Should I go to Mayo?  Will they be any better?  Or will they also find nothing?

I feel like giving up, but I have a child still at home who needs me not to become incapacitated.  I hope that you all can help me figure out what to do next.  Thank you in advance!
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19 Comments Post a Comment
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1088527_tn?1308136926
Hi and welcome to the forum it sounds like you are getting the run around from your neuro like alot of us here have experienced . Have you had an mri of your brain? do you have a primary doctor that you can see about these problems and see if they can do an mri and then recommend a neuro all your symproms point to something and you shouldnt have to suffer the way that you have been. I would look for another neuro if you can and I heard that the mayo isnt a good place to go . as most of us here and in my own expeirence dont give up and let the doctors win i am now into my 4th neuro and its been 5 yrs and still no definate answers. you will find alot of good info on this forum and alot of helpful people that can answer questions that you may have or just need someone to listen to you we have all been there .
take care
Kat
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572651_tn?1333939396
Welcome aboard - you are rright that your story sounds all too familiar here.  If you absolultely must stay with this neurologist, for your next appointment please be prepared to talk to him about Clinically Isolated Syndrome (CIS).

The FDA recognizes CIS as a precursor to full blown MS and the drugs are available to start at the earliest signs.  With the way you are progrerssing you really do need to agressively pursue some type of treatment.  If you need help gathering CIS information, let us know and we'll help.

that said, you don't want to be on any of the MS drugs if it really isn't MS, but in the long run they won't harm you from what we know.  But it means that whatever is really wrong might not be MS and might be overlooked.  Since he has sent you to the MS counselor it does sound suspicious  and treating CIS would be reasonable and customary treatment.

Your post here is perfect - it was good to meet you this morning and I hope we will see you around often to help sort this out.

be well, Lulu
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1253197_tn?1331212710
Hi and thankyou for sharing with us what you have been going through for many years. It takes a lot of courage to share all this personal information and can bring up a lot of feelings by touching on all these memories.

It sounds as if you are feeling very frustrated and disalussioned with the medical world and who can blame you. I can offer no advice or insight into specialists as I live in Uk but all I can do is encourage you to listen to your gut instinct. I sense that you feel you do not have all the answers to your neurological symptoms and you are right to be seeking another opinion. If you have not had a brain MRI this is essential.

Anyhow I just want to say you are definitely in a place where many will understand all that you have shared and you are warmly welcomed.

With best wishes

Sarah x
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Avatar_f_tn
Yes, sorry.  I was cutting and pasting what I had originally written and parts got left out.  It was all too much to include.

I have lost track of how many MRI's I have had.  At least 5 of the brain.  Maybe more.  They had also done my C-spine once about 4 years ago, but never the T-spine.  I thought surely that would show something, because it all started with the limping and the walking has gotten so much worse. But, no.  Nothing.

He told me there is one spot on my brain, but he considers this normal.  He said I would need to have 15 spots on my brain for it to count.  He said this MRI that I just had is normal, so maybe that one spot went away.  

I am very discouraged, and if it weren't for my child I just would give up.  But, she needs me very much and I have to somehow find an answer.
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338416_tn?1260996698
What strength were these MRIs done at?  For example, was it an open MRI, or was it a closed tube?  

Diagnosing MS is difficult enough as it is, without lesion-counting neuros.  See if you can get a 3T MRI done of your T-spine.  Weak legs are a clear indication that something is going on in your spine.  Even if it isn't lesion formation, perhaps it will show something else.
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Avatar_f_tn
Today I worked (I am a substitute teacher at a school for kids with special needs) and this afternoon my legs are not working.  I was fine during the morning, but after lunch I started feeling bad.  I had some dizziness, especially when getting up out of my chair. The walking was not a bad problem until after I drove home.

I never knew until this time to ask about the strength of the MRI machine.  This one was a 1.5.  The tech said that would show everything that needed to be shown.  I knew better from reading this forum, but I didn't say anything.  Discovered long ago that med people do not like patients to know anything about medicine.

I have never had an open MRI.  All of my MRI's have been inside the closed machine.

I did talk to someone at school whose sister-in-law is a neurologist in a nearby city.  Her brother is a neurosurgeon.  She said they will not practice in our city, because all the neurologists here are terrible.  I had planned to try to get an appointment with the sister-in-law, but when I googled her she specializes in epilepsy.  So, I do not know if this would be worthwhile.  It is about  90 minute drive from here, and that is doable for me.  But, it doesn't seem like a good idea to see an epilepsy specialist for my problem.  What is your opinion?

I appreciate you all helping me.  I have pretty much come to the end of myself here.


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338416_tn?1260996698
I think the best thing would be to ask her directly.  Just because she specializes in epilepsy doesn't mean she doesn't know how to treat MS.  However, if you're looking at a 90 minute trip out, then you should look around and see what else you can find.  I don't know where you're located, but there's got to be an MS specialist around there somewhere, right?
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Avatar_f_tn
Yes, I guess my current neuro is the guy.  He is the only guy in the state certified in MS.  Maybe I should look in surrounding states.

Does this board have a "great neuros" thread?  Like a place where people can post about their wonderful docs?

I understand that it would be bad to have a list of terrible docs.  That could create libel issues for the website.  But, what about posting the names of docs who have been good to people?  Is there anything like this?
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338416_tn?1260996698
There's actually a blog that rates neuros!

http://www.msneuroratings.com/ratings.php  

It's user-generated, but if you live in a populous area, it shouldn't be too hard.
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Avatar_f_tn
Hello from a fellow lurker. Just wondering if you HAVE to see an MS certified neuro. Perhaps there are other neuros that are very familiar with it and treat it (and may be more open minded during the diagnosis process you are going through). If this guy is going to wait for 15 lesions and it is MS, you may be doing yourself a great disservice by continuing with him. Have you checked to see if other neuros on your city have patients with MS? I do not know how to find MS support groups - maybe someone here knows? or you could check with your local hospital? - but that may be a way to get a referral? Second opinions are usually a good idea anyway.
Good luck to you.
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Avatar_f_tn
Thank you all.  I am seeing a counselor at the MS Center (my neuro referred me), but I am not allowed to meet other patients there until I have a "firm" diagnosis.

I talked with my friend at work who is an RN.  She recommended a neuro she is familiar with and thinks does a good job.  I am going to call them.

I am feeling a lot worse today.  Last night my left (more affected leg) was actually hurting (this is a first) and today I am having trouble with both legs having a feeling like they are going to sleep.  This is a different kind of parasthesia than I have had in the past, and more of the legs are involved.  Also, I am having dizziness, which I have not really been aware of in a while.  I have exerted myself  quite a bit physically this week, worked 2 days, and had some upsetting news on Monday and again today (a family matter that is on ongoing stressful drama).

I think I really need to see someone soon.  I am afraid of how much I could deteriorate in the 4 months before my curent neuro wants me to come back.
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Avatar_f_tn
Okay, sorry to reply to my own post.  I will lose track of this if I don't post it now.

I have spent the past several hours doing some research on a few of the things discussed here in this forum, on this thread and others.

I have studied the McDonald Criteria and concluded that I do not fit enough of it to get an MS diagnosis from any doctor.  It won't matter how good the guy is, if the proof isn't there, it isn't there.

I have had at least 5 MRI's, maybe 6, and all have been normal.  I have hyperactive reflexes and a positive Babinski sign (I don't know if I still have this, but I did at one time).  Other than that, it is all subjective and increasing level of disability, which does not count.

I understand now why he seems to completely disregard things that freak me out, like parts of my body moving without my direction or being unable to control where exactly my foot lands when I am walking.  He is not really interested in how severe this particular "lession" gets; he is looking for something new...a new location.  So I could become completely paralyzed, my legs could be completely numb and it would not matter at all without a positive MRI or something.

So, now that makes more sense.  I wish he had explained this to me, instead of me having to figure it all out for myself.

I also looked on the CMSC website, and my current neuro is on the list, along with the MS Center I am going to (they are affiliated).  There is no other neuro from my state on the list.  The next closest one to me is about 2 hours away.  I am considering it, but I have an appt with my MS counselor on Monday, so I will probably talk all of this over with her and maybe I will have a different perspective after that.

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338416_tn?1260996698
I think it would be beneficial to seek out a 3T MRI.  At 1.5T, many things can be missed.  I would talk to the MS counselor about it - if there is increasing weakness, and the neuro insists on doing the MRIs at 1.5T only, then that's just a little odd.
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1394601_tn?1328035908
Please hear me.  I sat with a neuro that specialized in MS for three and a half years.  I was already using a wheelchair for any distance walking.  We live in a small town.  Naturally, he ran MRI's on my brain and spine.  Of course they were l.5t.  They showed nothing except a pinched nerve in my neck.  So, I sat without treatment for all those years.  Include the six year search before him as I looked for an answer.  It took me until the day I lost all strength in my dominate hand to walk out and look for another neuro.

That neuro knew by examining me that the problem was serious.  The next morning she had me scheduled for an MRI in a 3t.  By noon we were called.  It was MS.  My spine and brain stem lit up like fireworks.  The following day I began steroid treatments monthly which I will continue for another year or so.  The following week Rebif was started.  I also had a spinal done.  It showed eight 0 bands.  

The damage done to my body shouldn't have happened.  My first neuro was well educated.  He had to know that the 1.5t was not high powered enough to pick up those lesions.  Why didn't he send me two hours west to a large hospital?  Greed.  I was a loyal patient.  I saw him faithfully every three months.  Money.  He didn't want to lose it.  

Please don't sit.  Yes, slowly I am gaining strength but it is a struggle.  Don't wait.  Don;t stop until you find an answer.  I wish I had listened to my inner self but I stopped listening.  After so many doctors.  So many not finding it.  I gave up.  Please don't.
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1394601_tn?1328035908
I want to add....your foot not landing where you want?  That was my first indication I was having a problem ten years back.   I built displays for stores.  I had worked on ladders all my life.  I could no longer judge where my right foot was on the ladder.  My foot stopped cooperating.  I had to stop driving because that foot wouldn't lift from the gas pedal.  I have just one small lesion on my brain.  The others are on my spine.  Trust me when I say, get a 3t done.  
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Avatar_f_tn
Thank you for sharing your experience, Sumanadevii.  It really hits home.

I did not think about a problem with driving developing as a result of my right foot flying around while taking a step, but it makes sense.  My current problem is that I kick my cane!  Or my dog.  :-(

On Monday I am going to try the neuro my friend at work recommended.  I am also going to call the MS Clinic in Cincinnati.  I may make appts at both places and see what happens.  If the first one does not go well, then maybe the other place will be better.

I had trouble sleeping last night due to the "asleep" sensations in my legs and left hand.  I am used to having parasthesias and the bottoms of my feet have burned for months.  I don't even notice that anymore.  Electrical and tickling sensations have always announced a flare for years.  There is something different about these "asleep" sensations.  Maybe I am just scared and freaked out, but it feels foreboding.
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1394601_tn?1328035908
Oh geezzzz...burning feet another first sign for me.  I used to wrap them in cold towels and turn a fan on to even think of sleep.  I dunno.  It sure could be from lesions on the spine.
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Avatar_f_tn
There has to be something.  I have limped with my left leg for about 15.5 years off and on.  But now my right leg is getting really bad.  It is my good leg and it does weird things my left leg doesn't do.  Like not being able to control where my foot is going.  And sometimes when I take a step as my left leg collapses, my right knee flies up like I am trying to step over something or marching.

A good day is when my left leg is stiff and doesn't collapse under me.  I guess maybe this is spacticity.  It started this summer when everything began going downhill fast.  But the stiffness is good in a way.

I used the walker at school yesterday and it really was not enough.  I sometimes have to walk students from one building to another, and this is really hard on me.  I am afraid in order to continue to work at this job (only a part-time sub job, but I love it and need the $$) I will need a scooter or motorized chair.  I do not have $$ for this and also wonder how I will transport this.

Just learned this week that SSA overpaid my daughter, so will be repaying that.  Life just gets harder and harder, and I don't know if I have ever felt so powerless.
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1323278_tn?1298126088
You should definitely see another doctor.  If you can afford it, go to the best doctor you can in the closest accessible destination, and then ask him to refer you to a good doctor convenient for you.  At this stage, I'm with Sumana... you have to change doctors and move aggressively to identify what's going on.  
Best of luck to you!  And keep us posted...

Pablo
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