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Old 01-09-2010, 02:55 AM   #1
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Baffled- 1st neuro appointment

Hi everyone
I had my first appointment with a neuro which lasted 10 minutes and was very unpleasant. He was very abrupt and dismissed my questions and told me that because my mri was clear I almost definately do not have MS (which is wonderful if I trusted him). When I asked him if he could be sure without knowing any of medical history he said he didn't need to know. He told me he is putting me on oral steroids for a week which should sort my optic neritis out which is still quite bad after 3 months. When I asked him if this would stop my balance problems and dizziness and vertigo he said he didn't know as that was probably stress or maybe an inner ear problem. He said he didn't care what any of the eye specialists had said about oral steroids (they didn't want to put me on them and they were also concerned about possible side effects and long term prognosis. I will be seeing my Gp next week and I wonder if anyone has any suggestions as to what I should do. Thanks a million.


 
Old 01-09-2010, 05:31 AM   #2
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Re: Baffled- 1st neuro appointment

Sorry to hear this. What does this guy specialize in besides rudeness? Optic Neuritis is NOT treated with oral steroids in this day and age....at one time, it was; however the school of thought is that by treating it with oral steroids, it actually does often return and can be worse! Now, only IV Steroids are recommended and even those, need to be started much sooner .....if you wait too long, they do nothing, and therefore, usually nothing is done for the ON after its been ongoing for a few weeks. Usually a Neurologist does not treat symtoms and diseases of the eyes, you should be treated by a Neuro-Opthmologist.

As for him ruling out MS without doing any kind of physicial or history. YOU NEED TO STAY FAR AWAY FROM THIS DOCTOR. He obviously isnt a MS specalist, nor is he MS savvy.......find another consult, and do it soon. Call your GPs office, let them know that this Neuro refused to talk to you, do a history, etc...and demand that you get another opinion. You can also call your insurance company and let them know what happened. Lastly, you can call the state medical examiner in your area and file a complaint. OR, you can simply live and learn, but I would be asking for a referral with no one short of a MS Specialist at this point. You need to take your films, reports and any tests that your GP did, to him for an opinion.

Yes, its true without a single lesion you probably do not have MS; however its not usually written off that quickly. What didnt show up on films today, might show up in 2 weeks. If the MRI didnt have contrast, and if it wasnt of your brain, and at least C spine, sometimes T spine as well- then it wasnt done correctly. And, no doctor, bases everything on your films, there is also your symtoms to consider. You really need a better second opinion.

The great news is, at least he didnt see anything. But the second question is, is he qualified to know what he is looking for? If this particular Neuro speclizes in Migrane Headaches- he wont know what to look for, or ask about when considering MS....not all Neuros are created equally.

Try to get another opinion. Sorry you had to go thru all that. What a waste of time. Chin up. The good news is that your MRI wasnt riddled with lesions!
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Old 01-09-2010, 01:17 PM   #3
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Re: Baffled- 1st neuro appointment

Considering all the brilliance shown by NHS, I would be apprehensive about your first appointment. Perhaps the MS Society in the UK can give you some assistance in locating a competent neurologist.
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Old 01-10-2010, 05:22 AM   #4
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Re: Baffled- 1st neuro appointment

My situation is very similar to yours - except that my hospital opthalmologist immediately put me on a three-day course of IV steroid (Solu-Medrol). My presenting symptom was strange visual effects and the diagnosis was papilloedema (swelling of the optic nerve head), which is also frequently and vaguely referred to as optic neuritis or neurosis. The distinguising feature is that optic neuritis is painful - there was no pain in my case.
Oral steroids are not recommended for optic nerve problems.
I had an MRI scan and was told that I definitely do not have MS. However, the neurologist (a leading university professor specialising in MS) is sending me for an 'evoked visual potentials' test this week, just to determine the current viability of the optic nerves.
You should really be consulting an opthalmologist or a neuro-ophthalmologist, preferably at a teaching eye hospital, as quickly as possible. Do not leave it any longer as your optic nerve could be permanently damaged whether or not you have MS. As you are in London, you can't do better than to contact Moorfields as an emergency case.

Last edited by TopGeek; 01-10-2010 at 05:29 AM. Reason: typo

 
Old 01-11-2010, 03:59 AM   #5
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Re: Baffled- 1st neuro appointment

Hello TopGeek

Thanks for your response, I am under the care of Moorfield Eye hospital they referred me for an MRI and to the neurologist with suspected MS. My neuro eye doctor was at this neurologist appointment (the neuro was very rude to him and me). They are in charge of special medications for clinical trials and that is why I think they wanted me to see this guy with a view to going on a trial. I think the neuro had decided when he saw my MRI of the brian and orbitals which was not enhanced and appeared normal that I didn't have MS and that is way he was not interested. He wants to see me in 6 weeks, I suppose to see if the oral steroids work. My first appointment with him was cancelled as I was on my way there as he said he wasn't the right person for me to see and that I should be seen by a consultant neurologist. Then he changed his mind and gave me the appointment mentioned above. I am going to see my GP with all the evidence my daughter has researched regarding MRI which should have been enhanced with gadolinium and a sample selection of research papers (all research papers said the same thing) that state catergorically that oral steroids should not be prescribed for optic nueritis and what the contraindications are. I am going to pay for new MRI scans of the brian and spine myself and ask to be referred to an appropriate neurologist. I will update the thread if and when I get some answers.

Good luck with your situation and I wish you all the best.

 
Old 01-11-2010, 04:55 AM   #6
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Re: Baffled- 1st neuro appointment

Quote:
Originally Posted by MSJayhawk View Post
Considering all the brilliance shown by NHS, I would be apprehensive about your first appointment. Perhaps the MS Society in the UK can give you some assistance in locating a competent neurologist.
Thanks Jayhawk and Nikki i just saw your posts. I really appreciate the advice and hopefully I will get some answers soon.

God bless and best wishes.

 
Old 01-11-2010, 10:19 AM   #7
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Re: Baffled- 1st neuro appointment

Hi Tiffin. Well that was a rotten experience and, as the others have already said, that neurologist sounds like a pompous **** and should be reported. However, I know that's not easy in the NHS.
My MRI was supposed to be first without and then with contrast but the Prof. evidently decided that the second run was not necessary. I am going to ask for clarification when I go back this Thursday.
At least I only had visual disturbances due to papilloedema so I can understand your concerns with the balance problems. It was the second time in two years for me (and in the other eye) so my ophthalmologist treated it as an emergency. The consultant told me that MS was the most likely cause but the MS neurologist was equally certain that I do not have MS.
Both times, I was given 32mg Medrol tablets on a decreasing dosage to wean me off the IV SoluMedrol and they did upset my stomach. The consultant ophthalmologist was quite emphatic that the tablets are ineffective on their own and that they could worsen the optic nerve problem. I wish you luck with both the treatment and the outcome of your analysis.

Last edited by TopGeek; 01-12-2010 at 06:51 AM. Reason: three-letter synonym for donkey not accepted; hence twit.

 
Old 02-17-2010, 02:40 PM   #8
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Re: Baffled- 1st neuro appointment

I too had a very similar experience. My first MRI was clean too. I'm getting ready to go into medical school in a little less than six months, and he told me that ALL my symptoms were due to stress. I am not stupid, so I asked him why my blood pressure wasn't high, why my symptoms didn't go away in the summer, and why the symptoms have gotten worse in the six months since I found out I got into med school and all my stress went out the door. He kept telling me that I was fine, I was happy, and that I would be a great doctor. Yes, I know I will be a great doctor, but you have the script pad.
He walked in the door and asked my fiancee to stay out of the room. He drilled me about my family life, my stress levels, my fiancee, if someone was abusing me, and about all kinds of stress. I have none of that, but once the pre-med cat was out of the bag, he wouldn't let me say anything. To this day, he still doesn't know about 95% of my symptoms. The only one he paid attention to was sexual dysfunction. He then invited my fiancee in and gave us a speech about how everyone in Victorian England wrote depressing things because they needed to drop their pants and get busy. He recommended that I go see a Nurse Practitioner who specializes in female sexual dysfunction. He opened the door and literally pushed me out.
My fiancee stopped him and basically said, "Yo, wait a minute. Are you crazy?" He told the neurologist that I can't even walk up two flights of stairs without falling over from weakness or gasping for breath. I admit, I'm 5'2" and weigh 200 lbs, but THAT'S from the stress and no time to exercise. THe neurologist kept walking to the front desk then suggested that I have an ANA, a CMP, and a CBC drawn and an MRI of my lower back. He wrote on the MRI slip that it was for "back pain," after I told him that I didn't have back pain. He stood at the counter and asked if I had optic neuritis, and I said that my optometrist told me that my "optic nerves were swollen and red."
The neurologist said that wasn't good enough and that I should see an opthalmologist.
As he was leaving, I asked him if I needed to see a a mental health expert for my stress, and he said that I only needed to see the sex "expert" and that the MRI and blood tests were just to rule out "any real problems."
My symptoms include extreme leg and arm numbness and weakness upon any exercise (more and more often without exercise), periodic vision blurriness that can't be explained by eye professionals, urinary incontinence, bowel incontinence, neck pain, EXTREME fatigue, sexual dysfunction, severe balance issues, and I've started this new thing where words and sentences don't come as easily as they used to.
My primary care doc said that it was MS, not me. I didn't want to believe it, but the more I research the more it all makes sense. My primary doc's wife has MS which makes me think that maybe he knows more about what it looks like than the neuro.
My question: If it's stress, why do I not need mental help? How does stress cause leg problems and urinary incontinence? And why would I treat the sexual dysfunction when I could figure out what the real problem is? And how long is it going to take before I fall down two flights of steps in my home when I'm alone? I took quite a fall last night, but my fiancee was home, and it was after I reached the top of the stairs. My legs gave out because they were numb and weak.
I guess I have no choice but to do what he says even though he knows nothing about me or my symptoms. Even though I know he's wrong.

 
Old 02-17-2010, 04:36 PM   #9
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Re: Baffled- 1st neuro appointment

HI there. You should probably start a new thread and introduce yourself, but since youre here, Ill say hi, and welcome.
Now, the real question> What type of doctor did you see who told you all this? As a premed student, you know enough to know you need to see a Neurologist....and you also know that not all doctors have the same "bedside manner". Was this guy a Neuro ? If he was, he doesnt sound like one. Ive yet to meet a neuro who didnt do a complete nuerological eval in the office, and then order appropriate tests....you didnt mention any eval.
Can you go see a Neuro in your area? We have several people on this board from the Pitt area....if you start a new thread you might find some referrals...

Im sorry you are having it so rough. Sounds like you were judged on your weight and your words, not your symptoms. PLease do address the weight issue and start exercising (which of course will also help your stress) but I also realize with balance problems, exercising is tough. I use a balance ball and some DVDs which allow me to really improve my balance functions while also stretching and using hand weights....I also do some walking almost every single morning, about a mile- but it helps. Overall, I do find that with my MS, exercising really does help.
But as for you- you sound frustrated. And, im sorry for that. No one should be treated the way you were....please seek another opinion! And keep us posted...but seriously, start a thread and introduce yourself, bet you find some people in yourr area who can give you some resources..
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