I had the dreaded neuro appt....many tears

08-22-2006, 12:02 PM

Well, I had the dreaded neuro appt with the resident. I was already anxious before getting there. My bp was 141/88 which is far greater than the 120/70 it typically is. So I go in to see the doctor who looks younger than me (I'm 34!) Well, I begin telling her what has been happening since we last saw each other in February. I even pulled out my journal which she barely glanced at. She then poked me with a safety pin where in some places in my left are it did not feel sharp. She asked me to smile and the left side of my mouth did not rise up like the right. She tested my strength where I could feel that my grip on the left was not nearly as tight as my right. I was asked to walk in a straight line which I did just before grabbing her hands before I fell over. She looks as me and says, "Well your MRI back in January was perfect so that's a relief". I just looked at her. She then says, "I'm going to ask an older doctor about your case". After a few minutes she returned to say (I'll paraphrase here) "I'm clueless.

" I immediately became upset.

I was mad and hurt and so the tears began to flow. I told her that I knew I shouldn't have come. She says don't say that. I asked her what should I do. This has been going on for years. She starts telling me about meds for the pain and tingling. She then goes well if it was MS it wouldn't come and go like this. Ok, I wanted to jump out of my seat and choke her.

Correct me if I am wrong, but isn't that wrong? MS symptoms to come and go, right? Anyway, I nearly begged for to repeat the MRI which she refused. When I told her about saying and typing words I didn't mean, she suggested a neuropsych eval. She also ordered some bloodwork to rule out viruses. I was so discussed with her that I wanted to scream. I said "If I am crazy, just say so and put me on the right meds. I want this resolved". She then asked me about depression. It took my religion to keep me in my seat. I told her that while driving my foot sometimes bounces up and down and is that depression, too? I just got up and left with the orders for the eval and blood work. Just an awful experience!

By the way, since yesterday, i have a new symptom. When I blink my right upper I lid stiffens up and eventually relaxes just to stiffen up again. Anyone experience this? Maybe my eye is depressed,too!

Michelle

08-22-2006, 01:06 PM

Michelle,

I am so sorry that your appointment didn't go well.You were within your rights to ask for a new MRI.Yes,MS symptoms come and go.(wax and WANE).Relapsing and remitting.My MS is progressive.These symptoms lesson but always present.At least she was honest when she said she was clueless.Depression is there ultimate diagnosis when they are clueless.There is one advantage to a neuropsych test.If it is depression or stress it will show up on there elvaluation,if its not then they will either kick you back to the referring neuro or refer you to a new one.Blood work is always good.I get tired of all the blood work,but it does let me know if my blood is normal.If the neuro prescribed elevail,it will help with the numbness and tingling.Give it a try.
I don't think your foot is depressed,or your eye lid.My eye lid doesn't do what yours does,but if I move my eyes side ways the left eye gets stuck,it will move to the right but not to the left.Go figure that one.

I seen my neuro last week and told him my neck buzzes all the way down my spine and it zaps my feet,and it hurts.I just had c-spine MRI,Neuro said spine is clear,I told him I don't give a crap what the MRI stated I know how it feels.After he listened,he told me,he beleived me.
I wish I could of went with you to your neuro appt.I was 33 when my first actual attack happened,but thinking back I had many symptoms in my 20's.I was diagnosed this year.
Do you have a return visit to your neuro?If symptoms worsen call them back,keep calling them back.This will only get further testing done.I pestered the heck out of my old neuro.
Remember your not crazy or alone,you have support here.
I'm sending you hugs and prayers.

Toni

08-22-2006, 01:15 PM

Thank you, Toni. I was so upset with myself for bursting into tears. I didn't get a prescription, just the blood work and neuro psych eval. I do have a follow up appointment in three months. The registrar informed me the my doctor will be rotated out by then. So I guess that is a good thing. A fresh prespective on my case. I wish you had been there, too. I wanted to tell her to get someone in there who knew what he/she was doing. I just want some answers. It is so frustrating to have visable symptoms and still not get any answers. I asked her outright, what is causing this. She couldn't even give me some possible causes. She just instantly went to it's not MS. This conclusion was based on 10 minutes exam and 15 minute MRI. I just wanted to smack her.

I know she probably meant well it telling me that she didn't think it was MS which might have been ok if I hadn't done all of my own research and talked with people like you. I know that a 10 minute exam and one "quick MRI" is not enough to rule MS out just like it is not enough to rule it in. Well, I'll keep you posted on the neuropsych eval. Do you kno what that will include?

Michelle

08-22-2006, 05:00 PM

Michelle,

I have no clue!Its probably questions and answers.Post it,I now some here have had them.Boy I wish my MRI only took 15 minutes,my brain was 45 min.and the c-spine was just as long.A ten minute exam isn't long enough to evaluate a patient.When is your eval?Don't get down on yourself for bursting in tears its a natural frustrating response.

Toni

08-22-2006, 07:02 PM

Hi Michelle -
My doc did the same thing; "I don't know what this is" and the nuero did the same thing "Your brain MRI is clear so it's not MS" then he went and did a spinal MRI and a spinal tap with comparitive blood work. 19 oligoconal lines, 3 large lesions and lots of frustration later he said "you have MS".

A nueuropsych exam is a bunch of questions and testing of various things like looking at pictures and identifying what's missing (e.g. - little girl has no hands) and putting blocks together in certain patterns. It takes a couple hours, and can be very interesting as far as gaining self-insight. When you go in for the exam you will probably be asked to complete a HIPPA form. Make it clear to the receptionist that you will want a copy of the report and get a time frame for when you can pick it up.

With regards to your appointment today... I am sorry it was so frustrating but DO NOT feel bad about becoming frustrated and having a perfectly normal reaction; tears are a lubricant to the soul! It sounds like you are seeing a cooperative or clinic environment; find out who the staff nurse is. The doctor won't ever take your calls but you can usually get the nurse on the phone or at least get a call back (if you can score an e-mail address that's even better!) Call the nurse and tell them that you were overwhelmed at the appointment today and that you were not able to get the prescriptions you need. They can call in scripts to the pharmacy. You should not wait until your next appointment in three months to get some relief!

08-22-2006, 08:20 PM

Thank you for your support. I am feeling very alone in this struggle for results. I just wish I could wake up tomorrow morning and all of these "strange" symptoms are gone. Since I have wished that wish many times over and it didn't happen, I guess the symptoms will be there in the AM. I have this eyelid twitching thing that is really driving me crazy now. I mean can I get just a little break. This tightening of my eyelid is mildly unconfortable but getting to be a real nuisance!

Michelle

08-23-2006, 01:10 PM

Were you at MY neuro appt today? ..I heard almost the exact same thing! He said, " MS doesn't come and go like your symptoms and you're over the diagnostic age limit"

- I thought MS symptoms DID come and go and that I was in the appropriate age limit (36). He did say that there were small abnormalities to my neuro exam and wants to repeat the nerve conduction and EMG. Don't know if I'll do it or not

It's terrible when you know that something is definitely NOT normal, but the dr's treat you like its nothing. Thankfully there is a wonderful network of supporters on this board who are or have been in the same boat, so know that you're never alone with the symptoms or the limbo.

Millsc

08-23-2006, 02:41 PM

Millsc,

I'm sorry to hear you too had a bad appt. I'm 34 so am I over the age limit, too! Did you have a resident? I think that when it comes to neuro, the residents should be working hand-in-hand with a board certified dr. I wasn't offered nerve conduction and EMG testing. I was just sitting there with this sade "girl" looking at me with a blank stare. She was clueless. I thought that when a dr isn't sure that is when they are suppose to test. I am possitive that sitting and staring at your patient is not goint to get you any closer to a diagnosis. Maybe that is a new medical methodology...stare until something happen!

Michelle

08-23-2006, 03:12 PM

Hi-

I have heard Montel Williams talk about getting his MS diagnosis. He talked about this on his TV talk show in the afternoon. I think he has written a book. He speaks of his condition alot on the show. I believe he has started a Foundation to possibly earn money for MS research.

God Bless You.

08-24-2006, 04:43 AM

I wonder how someone can get the title, "Neurologist" without knowing basic information about MS.
Maybe next visit you should bring some printouts from the MS Society web site. Like the "typical" age at onset: the vast majority of new dx-es seem to happen in the 20s and 30s. (was dx-ed at 48.) Perhaps a definition from the dictionary of the words "relapsing" and "remitting".
Take the advice of the good folks here. You aren't crazy!

08-24-2006, 05:53 AM

Perhaps we should test our drs' knowledge before the evalution begins. If the dr doesn't know the basics, it's a waste of time!

Michelle

08-24-2006, 12:25 PM

Michelle,

I agree!!!!!!!!!!!!!!!!!!!!!!!!!!

It would save many patients anxiety,money,time and unwanted emotions.

Toni

I had the dreaded neuro appt....many tears

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