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Old 07-20-2012, 07:04 PM   #1
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Neuro-opth update and probably last post

Long post, but might be entertaining for those of you who have ever wanted to tell a dr. what you really think!!

I went to my neuro-opth appt today and the first hour was spent with his resident. She talked down to me, interrupted me, and basically said that there were no other tests that could be done for me, that I would have to focus on improving my quality of life rather than looking for answers. She had a sweet smile and a sweet voice, but treated me like crap. I was in shock, and when I started to cry, she suggested I may want to see a neuro-psych! I asked her what I should be doing about work, should I hold off making any decisions in case it gets better. Her reply was "it hasn't gotten better yet, has it?" I had heard such good things about the n-o that I was crushed to be treated like a hypochondriac.

While waiting for the actual neuro-opth to come in, I collected myself somewhat. When he came in, she trotted right in behind him with a smug grin on her face. I thought I was going to be okay but I wasn't. I asked the n-o if I could see him without his resident in the room. He asked 'why?'. So I very calmly told him that I felt that I was spoken down to, dismissed and basically told to deal with my symptoms. The resident immediately started to apologize (and justify). I continued to tell the n-o that I was a simple person but not a simpleton and that I was neither a hypochondriac nor a complainer and that until April 3rd, 2011 I was perfectly healthy. That SOMETHING was causing this and that it is gradually getting worse. That if I were an animal I would have gnawed my feet off by now and that his resident seemed to lack compassion.

The n-o WAS AMAZING. He said he was surprised to hear that about the resident because she was 'one of the best', but he didn't defend her more than that. He said he'd prefer to have her in the room because she knew more of the info that he did. He repeated the neurological exam, went over the notes that the resident had taken, looked at my MRI reports and he told me that I DO NOT have MS.
His pin ***** test was very telling and even I was surprised and how much sensation I've lost in my extremities. In ten minutes, he got more relevant information from me than the resident had in an hour.

He believes that I likely have small fiber neuropathy. He said it is difficult to diagnose and can be caused by a variety of disorders (Sjorgren's, lupus etc...) He wants me to see another specialist who deals with peripheral nerves. He also wants me to have a visual evoked potential test, and see a urologist for urodynamics (??) to see if my bladder issues are strictly nerve related or not. (And the snobby intern told me there were no other tests......)
He said that once the type of neuropathy is confirmed, they will work backwards to find out what has caused it. He also ordered a long list of blood tests to be done and in some cases re-done.

He also said several times that he had heard of a case like this before, that my story was sounding very familiar. He said he believes it's one he heard about from a colleague, and he would look into it.

He did NOT treat me like a nutcase, and completely agreed that there was something systemic going on.

Sooooooo - I DON'T have MS!!! That's great news. I also feel like this n-o is at the very least pointing me in the right direction and might even wake up one of these nights remembering where he heard of a similar case.

While I'm thrilled not to have MS, I have found great solace on this board and feel sad that I 'don't belong'.

I want to thank all of you. I've learned a lot about MS here, and have tremendous respect for those of you dealing with it.

I'm not sure what's in store for me. I worry about the nerve damage progressing and managing the pain of small finer neuropathy. But at least I seem to be closer to an answer.

Sending hugs to you all,
Gully

 
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Old 07-20-2012, 07:16 PM   #2
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Re: Neuro-opth update and probably last post

While you might be rejoicing, it is still too early to dismiss MS. If you have not yet had a VEP, then it is definitely too early to dismiss MS. I do not want you to have MS, but I do not want you to be misled in your quest. The diagnostic process would have to determine and answer on the way towards MS. If something else is evident, then the Revised McDonald Criteria has fulfilled its guidelines. I hope that your specialists can determine what you have. I hope the intern learned a lesson today!
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Old 07-21-2012, 07:02 AM   #3
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Re: Neuro-opth update and probably last post

Gully,
I dont want to burst your bubble, but I have to agree with Jayhawk. You havent had nearly enough testing to rule out MS and keep in mind that you will at some point, be given another MRI and it very well may show lesions which explain the nerve damage. I wouldnt be so quick to rule this out.....

N-O are great, in the sense that they are highly educated and he probably is going out of his way to make sure anything and everything is being done for you (yeah!) but he isnt a doctor of Multiple Scelerosis, and unless he was- he wouldnt be qualified to rule it out. I am seriously happy for you that you felt well taken care of- and even happier to hear he is referring you for further testing, but not quite ready to believe that what he is saying is the final bottom line. However, you are on your way to either finding out he is wrong or learning more but either way these tests HAVE to be done to rule out MS.

As far a the resident goes. I spend alot of time in teaching hospitals myself- the residents get better as they get more seasoned. Im sure it was a bad expereience, but try to remember, she is a resident, which equates to student, and experiences like you had, will only make her better in the future. Maybe she needed a patient like you to take her down a notch and make her realize that she was acting like she was....you did her a favor.

Hugs,
Nikki
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Old 07-21-2012, 07:57 PM   #4
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Re: Neuro-opth update and probably last post

Thank you both for your posts. I've been processing everything that the O-N said yesterday, and reading about small fiber neuropathy. I do think that I'm on the right track to an answer but after a rotten night's sleep, I woke up not so sure of what the answer is going to be.

There is a skin biopsy test that can be done to confirm small fiber neuropathy, so it will be interesting to see how that will turn out.

In the meantime, whatever this is, I already have it and one day and one doctor hasn't changed anything. I'll probably lurk around here awhile longer, and keep you updated. Who knows how long I'll have to wait for the VEP and the visit to the nerve specialist.
In the meantime, I don't have the energy to make new friends.

Have a good night
Gully

 
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Old 07-22-2012, 01:09 AM   #5
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Re: Neuro-opth update and probably last post

Since you had multiple MRIs and all were clean, what the neuro-opthalmologist said sounds reasonable. I think its time to look for other possible causes and to stop preoccupying yourself with the possibility of having MS. Although MS in theory could still be a possibility, I would say the chance you got it has now decreased. I don't think VEP will show anything significant in your case, as apart from the pain your vision only seems to be midly affected. I had retrobulbar neuritis and still managed to fit into normal VEP delay range. Do not expect much from this test in your case. Perhaps they should do a lumbar puncture just to rule out there is no infection in the CSF and to see if there is anything abnormal.

 
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Old 07-22-2012, 05:36 AM   #6
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Re: Neuro-opth update and probably last post

Thanks for your response. I have had a normal LP already. The last MRI I had with contrast was 10 months ago. In theory, anyone can have MS, and I do agree that the indicators are pointing in other directions right now. My preoccupation however has been finding an answer, not MS per say. It's just that I've been told already that this wasn't MS and then when the field test results came back, it was brought back on the table. So it's a bit of skepticism.

With my neurological symptoms worsening since this has started, and the neuropathic pain affecting my life significantly I just want to know what I'm up against. If it is small fiber neuropathy, and it's idiopathic, I'll be sent on my way with only pain management. If it's not idiopathic, then it would be caused by something like lupus, sarcoidosis, etc.

Hmmmm, none of the menu items are very appealing - can I take a pass?

Gully

 
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Old 07-22-2012, 07:14 AM   #7
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Re: Neuro-opth update and probably last post

Gully,
There is a very specific test for Lupus....that can be ruled out by bloodwork.
As for the LP coming back normal- so is mine, so are LOTS of people's here. As for the MRI...well, that is a huge deciding factor. For many people nothing shows up on a MRI for years- or if the machine isnt strong enough, or contrast isnt used - there are alot of reasons why it might not show up ....10 months is a very long time. My MRIs are no more than 6 months apart, and Ive had changes in the last 4 months...

Im not trying to convince you that its MS, please dont take it that way, but as someone who has been around awhile, I have to say, its too soon to rule it out completely. As someone who also sees a neuro-opth, I can also say he isnt qualified to rule it out, but kudos to him for sending you for additional testing and trying to find out what else it could be.

I truly hope you do not have MS.....let me tell you, this week, my MS is hitting home and its no picnic. BUT, all of us who have been on the boards for awhile have seen people get told its not, only to find out at their very next MRI, that it is....so, its always a possiblity. just keep it in mind.
Please let us know what you find out and know that my prayers and thoughts are with you.

Nikki
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Old 07-22-2012, 08:10 AM   #8
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Re: Neuro-opth update and probably last post

MSNik: regarding the normal LP - when was it done last time? Was the O-band detection method IEF (isoelectric focusing) ? If it was done using IEF and you have no O-bands, yet you still have brain lessions, perhaps in your case the source of the problem isn't the immune system? Your case doesn't make sense. By using a cutoff of 4 or more bands in IEF, sensitivity of 90% and specificity of 94% is reached. Thats way higher than MRI. Cases when O-bands are caused by some other illness can be eliminated by blood/CSF tests. There is still chance though that you could be those 10%, outside the sensitivity of IEF, that it is unable to detect.

In case the number of O-bands is low, for example in my case only 1, IEF has lousy specificity and we can't say much about such a patient.

I would say that if Gullyabb's CSF was O-band negative, there is less than 10% chance of having MS (based on the sensitivity of the test). It of course doesn't rule it out completely, it merely suggests looking for alternative causes makes more sense than pursuing the MS cause.

 
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Old 07-22-2012, 09:09 AM   #9
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Re: Neuro-opth update and probably last post

The CSF in 15% of MSers is negative. I had a negative result in 1982 and again in 2002 and yet I have had MS for 35 years. Any doctor who relies on the LP as an MS specific test is doing a disservice to their patients.
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Old 07-22-2012, 09:52 AM   #10
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Re: Neuro-opth update and probably last post

Quote:
Originally Posted by MSJayhawk View Post
The CSF in 15% of MSers is negative. I had a negative result in 1982 and again in 2002 and yet I have had MS for 35 years. Any doctor who relies on the LP as an MS specific test is doing a disservice to their patients.
LP is most useful at the beginning when MRI is negative, by helping to predict possible MS patients when MRI cannot and to rule out other causes. It is not a MS specific test, but in combination with other tests when MS like symptoms are present (ON, numbness etc) it can still be useful. This is exactly the case of Gullyabb. Once other options are exhausted, they may return back to MS diagnosis.

Nobody here is suggesting that MS diagnosis should require positive LP. Diagnosis follows the path of most likely diseases, initially based on symptoms and later based on test results once they are available. For a doctor it would be irresposible to ignore chance and follow some unlikely path or even worse - to scare a patient with some unlikely diagnosis. If I'm reading the 2010 revised McDonald criteria right she doesn't meet them, so what the doctor said to her was correct - she doesn't have MS by definition, in worst case could only be labeled possible MS.

Last edited by wildhorse64; 07-22-2012 at 10:07 AM.

 
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Old 07-22-2012, 10:23 AM   #11
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Re: Neuro-opth update and probably last post

Wildhorse,
I have now had 3 LPs. One in 2004, when I presented with MS symtoms, at that time, my MRI was positive with over 50 lesions, but a LP was done because I was also exposed to Meningitis....the LP was negative for Obands.

I had it repeated a year later, to see if it changed, it had not.

I had an LP only last week...again, no obands.

an LP is only indicative of an autoimmune disease...my immune system is completly off kilter. It has only gotten stronger through my use of LDN, which stabilizes immune systems, instead of repressing or accelerating them, which is what Rebif or Copaxone do. Having been on Rebif for 6 years, I was sicker than Ive ever been in my life, as it supresses the immune system.

My mother who has rhematoid arthritis, has Obands- 15% of all MSers do not.

The LP is used to look for infections- things which mimic MS, such as PML or Meningitis, nothing more. Having them or not having them is not conclusive for anything.

In Gullys case, having not had an MRI in ten months, this would be an important test to repeat (with contrast) as things can change on an MRI from week to week. I just went through that. My MRI was unchanged 6 months ago, but after 4 months shows significant new active lesions.

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Old 07-22-2012, 01:03 PM   #12
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Re: Neuro-opth update and probably last post

For clarity- I did have a repeat MRI four months ago, full spine, no brain, no contrast.

The n-o is in Halifax NS, and is part of the MS research centre and on the faculty at the medical school there. So I don't know if that makes him an MS specialist, but he's better than anyone I'll see in this corner of the world. The neurologist I see in my city is not an MS specialist, we're a much smaller city, and she's been off on medical leave herself which is why I haven't been able to see her.

Wildhorse - I fully understand your point - right now I do not have MS. I guess when I hear that, I understand it to mean that MS is not the process affecting my body. I think what the others are saying is that without another diagnosis, it's still possible. In my simple terms, it walks like a duck, quacks like a duck but hasn't laid an egg.....

Because the n-o is in a larger centre, he said that some of the blood work would be more detailed. I've been tested for many autoimmune issues already, but he is repeating them. I also am HLA B27 positive which is what sent everyone in the direction of ankylosing spondylitis initially.

I had an abnormal EEG here, but when it was repeated at Leahy, they said it was normal.
I had an abnormal nerve conduction study done here, at Leahy, they said it was normal.
The only test that has shown any other abnormality was the Goldmann's visual field test.
The ophthalmologist said it was typical of ON, but the n-o said he wasn't worried about it.
LP in Sept was normal
Some bloodwork came back with leucocytes high, but when repeated came back normal

And that's the shortened version of the past 16 months......

The n-o ordered
C-reactive protein
C3 complement
C4 complement
cryoglobulin (I have an uncle with Waldenstrom's macroglobulenemia)
Immunoglobulin (heavy chains)
Immunoglobulin (light chains)
Serum protein electrophoresis (sp?)
RA factor
ESR
ANA
anti-mitochondrial
anti-neutrophil
ANA screens (can't read what's after that)

Gully

 
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Old 07-22-2012, 01:38 PM   #13
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Re: Neuro-opth update and probably last post

Your N-O is probably as close to an MS Specialist, but he is not an MS Specialist due to his specific area of specialty. I live in the sticks and there is no MS Specialist unless I drive about 2 hours. There are general neurologists, but they simply do not have enough knowledge or experience with MSers.

As to the likelihood small fiber neuropathy, I certainly hope this is not a possibility for you. The worst part of my MS has been the nerve pain. Learning to deal with the pain and how to dull or erase the pain is always difficult to know whether the effort will be successful or futile.

I certainly hope you get answers soon.
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Last edited by MSJayhawk; 07-22-2012 at 01:39 PM. Reason: add

 
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Old 07-22-2012, 01:40 PM   #14
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Re: Neuro-opth update and probably last post

MSNik: I agree that MRI of brain with & without contract should be done again as lot of time has passed since the last one. That doesn't prevent doctors from looking for other causes in the meantime.

Gullyabb: I also had abnormal EEG, with NREM 1 sleep states, but the results had low specificity and was told not to worry about it that it may be normal.

I don't understand why they repeated MRI of spine 4 months ago, but only without contrast? Without contrast I think its not possible to see active lessions due to the lession matter having the same density like the surroundings. If they ever want you to repeat MRI again, suggest politely to do it both with & without contrast.

 
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Old 07-22-2012, 04:17 PM   #15
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Re: Neuro-opth update and probably last post

Gully,
as I stated initially, I think the world of your Neuro-Opth because he is sending you to others for THEIR opinion. Thats key in dx any disease which is outside of one's specialty. I also hope and pray that they find something which is conclusive so you get answers. My only opinion was that until you have actually had repeated tests FOR MS, or ruled out everything else, you cant rule it out entirely. Your initial post, and even the title of the thread suggests you were writing off MS completely. The very fact that they didnt MRI your brain or brainstem, and didnt use contrast, suggests that whoever ordered it, wasnt looking for MS, as its not a workup for MS...either that, or they simply were not qualified to know what they were doing when it comes to MS.

A neuro Opthamologist, is simply an opthamologist (eye doctor) who is familiar with diseases of the eye, caused by neurological nature. He is NOT by any means, a MS specialist. HE is, usually, an expert in Optical Neuritis and sometimes even traumatic brain injury which causes rapid eye movements. He is qualified to order tests and if he is smart, qualified to know when to suggest moving on to another specialty. Yours, apparently is smart enough to know that although this has some familiar ring to it, he just cant place where that ring is coming from....he had two choices, stop seeing you and close out your case, or refer you elsewhere hoping to help you find answers. Thankfully, he did the second.

Realizing that not everyone lives in commutable distance to big univeristy hospitals or major cities, I understand your predicament. I actually drive 1.5 hours to my MS specialist, pay him 350$ a visit out of pocket (he doesnt accept my insurance) and yet I have 5 of them within 90 miles of my home. I happen to think this particular one has the best MS center; and a terrific MS nurse, who I admire and respect. My general neuro, however is only 7 miles away. And, hes in network. Sometimes, we have to bite the bullet and go the extra mile in order to get what we deem to be the best care.

No matter what happens to you, I know you are doing the very best that you can do to get answers. Youve been really strong through all this, where someone else might have fallen apart and called it quits by now! Youre an inspiration to me. honestly. Its people like you who we learn the most from about just how difficult neurological diseases are to figure out...and my heart goes out to you knowing how hard this is on you.

Whatever you do, keep us posted.
Hugs,
Nikki
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