Frustrated with 1st neuro appt

[hflietner]

After waiting 3 months for my first neuro appt. I left in complete shock. I have quite a long list of symptoms, brought them to the appt (so as not to forget them). Spent 5 minutes of the 2 hour appt discussing SOME of my symptoms. And another 5 minutes on the physical exam, which was difficult but I passed!

The neurologist interrupted my to start discussing my life. Example children, husband....she then spent a very, very long time asking about what she considers tragic events in my life that happened 20 years ago. For example...my grandfather passing away. I'm terribly sorry but everyone has a loved one that passes away, you cope and hopefully move on. Anyways, my life, is really great! (Besides the physical crap). I am a very well adjusted person.

POINT of the story. She did the physical exam (5 minutes) and then determines that I need to see a psycologist due to my body manifesting years of tragedies. I am gratefully stating that I haven't had any tragic events in my life.

The diagnostics leading up to the appt were an MRI of the brain and cervical neck. Recheck of some basic blood work... Vit D which came back normal, it was low last year. In 01/2011 prior to any of my neuro symptoms, we ran the basic "pain" bloodwork eg...lymes, ana, sed rate.

So, I asked her what the next step was. "I really don't think we need to proceed any further" " Everything that needs to be done has been done" I asked about a spinal MRI and all she could say was that my physical exam had no evidence of needing it. Because at your age (37) if you had MS it would show up on the brain scan. WHAT? I have read in numerous places ( and no someone) that it doesn't have to show up on the brain scan. Her recommendation is that I should see a psycologist because my body is reacting to the stressors in my life. I really can't stress enough that anyone that knows me is amazed at my positive attitude, my williness to work (and work hard), the ability to smile in most situations...that is me, it is not a front.

HELP! I will play by her rules! Has anyone else experienced this?

[valeriem2220]

Oh my goodness...I did seriously have to look up half way through your post to check to see if this was actually the post I made about my 2nd neurologist. I was told I needed mass amounts of anti- depressants and a psychiatrist. I was told that my symptoms were from stress in my life. I am like you , I have had people ask me how I can be so upbeat and smiling all of the time, especially now. But like you, that is just me. I always tell people, "There is always a bright side to everything, no matter how big or how small, it is there, you simply need to look for it a little harder sometimes."
I do have my stressful days...who doesn't? But I don't feel like I have more stresses that many other people.
Don't give up. I am with my 3rd neuro and I really like him a lot.

I am so sorry you had to go through all this. I am new to this forum, however I have had MS for approximately 10 years and I was 37 when they found it. I had the lesions on the brain, but I had a negative lumbar puncture. Although it was obvious, I would not accept the diagnosis until recently, because I could no longer hide it and have gone on a DMD.

IMO, a lot of neuros don't really understand MS as well as an actual MS Specialist. I personally would ask for a referral to your nearest MS Specialist. I would not keep going down a road that I did not feel comfortable with. My local neuro takes care of things that come up if I need emergency assistance, but my MS Specialist (located an hour away) takes care of all my MS treatment.

I was in the military and have seen a lot of neuros, and the exams are usually short...not really extensive. It was always more question and answer sessions with a short exam and a boat-load of tests.

Finally, I don't think it is uncommon for the regular neuros or MS Specialists ask for you to see a Psychiatrist. In fact with my current MS Specialist it was pretty much mandated that I see the Neuro-Psychiatrist at the MS Center. Getting a chronic diagnosis of MS or any other disease is very stressful and so is going through the process of potentially having one and sometimes we can not recognize how stressed out we really are. I am so glad I have a Neuro-Psychiatrist, she has helped me in so many ways (without drugs). I wish I would have gone earlier.

I am sure you will get some sage advice here on how to proceed...there seems to be a wealth of knowledge here.

[gomer]

I hear ya!

Back in 1987 the VA literally sent me to their shrinks. (complaining too much). The shrinks decided I was not nuts or even depressed, just "adamant" that something "else" was wrong, just not showing up on testing.

It was obvious to them I had neuro issues, never saw a neuro, but they blamed it on my being diabetic. The most they would do was give me some B-12 (borderline) and suggested I use a CANE (in my 40s!)

It was a new eye doc that in 2009 noted my diplopia (since 1964) was NOT related to anything in my med Hx and opened the MS can-0-worms.

Gomer

[MSW1963]

A 5 minute neuro exam would be an embarrassment to any qualified MS specialist. That is not a sufficient length of time to make a through evaluation, the body has just too much territory to cover in 5 minutes.

[MSW1963]

I want to add that my MS Neuro was familiar w/my written MS sx history.

I was treated by another ms neuro in his practice a few years earlier and my written history was in my medical files.

When I returned to the practice on my first appoint with new ms neuro, he was very familiar with the oral history I was giving because he had read it from my sx history in my medical file, even following my written portions as I talked about various sx's.

He also spent approx 1.5 hrs total including probably 45 minutes on the exam.

He also keeps a small heater with his office door closed to evaluate effects of heat during the OV.

[maitrimama]

Is your neuro named Alice?

My first was to find out what part of the country you live in because I swear we have the same neuro...lol! She asked the right questions but as soon as I saw her eyes glaze over I knew it was a lost cause. When I asked her about my balance she said "well, have you fallen?" and I replied "no, not yet." she then started talking about stress and anxiety (sound familiar?). She said the changes in my MRIs were vascular (another neuroradiologist said he felt there was a 50/50 chance it is MS and feels a LP is warranted). She ordered an EEG and totally forgot to give me a referral to an Ophthalmologist - my vision is my chief concern.

The most ironic thing is that it is my Psychiatrist is the doctor who recognized what was happening, he asked me to make a list, went over the list with me, assured me it wasn't in my head and encouraged me to see my GP. My Psych knows me well, seeing me atleast once a week for almost 2 years. I am not afraid to admit I have had tragedy & trauma in my life, I have a complicated bipolar diagnosis (which is now being revisted) and I am an alcoholic/addict in RECOVERY. I know that is a lot but I also know that what is happening now is different.

My biggest fear is that damage is being done to my eyes while I am not being taken seriously. Thank goodness I have all you guys to share with <3

[hflietner]

Plot gets better!

Ok so, I got a call from the behavioral health department in order to set up my appt with the psychologist. The girl on the other end was screening me in order to get me assigned to the most qualified person that could help me. She is puzzled after I answer he questions regarding alcohol use. She then asks "Why were you referred to see us" I told her the story I have told you guys. I informed her that I would of course comply and see the psychologist, however I am seeking a second opinion.


Ok are you ready...She says "forgive me, however my referral from DR.______states that you are being seen for alcohol and substance abuse problems". Needless to say she didn't schedule the appt.

This is my alcohol trouble (sarcastic) My last drink was 2 Christmas's ago and I didn't finish it. The time before that was the Christmas before at a work party.

Here is my "Drug" list. Citolopram 40 mg once daily Gabapentin 1 twice daily a daily multivit along with an iron supplement. When I have a migraine I take a methocarb (muscle relaxer) and Tramadol as needed during my migraines. Of course tylenol and ibuprofen as needed. This is my drug problem?????

SOOOOO...Good news is that my regular provider is not happy, I am getting my second opinion and they have had another patient complain. Thanks all for your support!

[JustineS]

Considering changing Doctors myself

Diagnosed with MS in 1997 and immediately put on Beta-seron. Would see neurologist every 3 months,then 6 months-then once a year.Symptom free for 15 years!
The main complaint I have had is my neuro has ALWAYS
put doubts in my head about my diagnosis.Joking when I had been symptom free for 15 years on Beta-seron. Improved MRI's! Telling me that I cant attritubute every ache,pain weird symptom to MS. I am actually an ex-medical technogist myself and frankly I want to attribute symptoms to MS so that I dont think that I am sick with something else-piece of mind in my case is so helpful.When diagnosed in 1997 my symptoms decreased
from the relief of diagnosis.As a scientist it is frustrating that there is no definitive test that says yes you have MS.There is no such thing as exact science.
Every time I go see my neuro I feel that He does not know me from appt to appt. I drive over 1 hour to see him for 15 minutes.
Because of my doubts feeded my him I foolishly went of
Beta-seron in July 2010 and now I am flaring horribly Oct 2011.At my checkup in July 2010 he had nerve to say to me-to ask if I ever did an MS therapy drug. Isnt that something important to know!! Its in my file-dont they review their day's work.I work in a school and we always have a plan for the day.
Also put on IV steroids for first time-no follow up call by him or office staff. At follow up appointment pushed up cause not responding asked if I was there for my ROUTINE
Appt.ARGH.I had also had to argue and yell at office staff to
get appt pushed up.You take your family to an urgent care clinic for illness and they call to follow up.
Currently on 2nd round of iv steroids-and he told me to see
him in 6 weeks. I asked if No improvement what do I do in
meantime.Very vague answers and implied that he probably wouldnt do more steriods. My home health nurse says I should call if I dont improve and I feel that will I have to argue about this.AGAIN.
I am back on beta-seron by the way- He asked my feelings
on discontinuing therapy and its results. Well geez I probably wouldnt have gone off in the first place if he had been more in tune with my case.

[KyleW]

The more of these tales I read, the luckier I know I am! My MS-ologist runs an MS only practice. There are 4 MS Neurologists on staff. There is also a staff Naturopathic doc, PT's, a LCSW. There is also an attending neuro-psychologist, urologists, orthopedic surgeons, neurosurgeons... All focused on MS whole patient care. I have my docs cell phone number and he answers it 24/7. They have an onsite infusion suite and are adding their own 3-Tesla MRI next month. I sometimes think it's more like a day spa

[JustineS]

Onsite MRI would be nice

On site MRI would make total sense for a neurologist office.
Ya think! I have been to orthopaedics and they have them.
Plus xrays,onsite PT,labs etc.
When I started my flare up had to see an associate who wouldnt start steroids until MRI done. Told me to get one next day. Ha Ha easier said then done-call the MRI center I have used in past.
My neuro always want comparision film. Wouldnt that be easier if they did their own!Had to beg the center to do it the next day.Had a tech come in 1 hour early. Why am I the one doing the begging? Shouldnt my neuro Doc do this-they have no clue about insurance,case load at MRI centers.
Fortunately the MRI center is one that calls in results same day so started the steroids next day.Unfortunately when you are flaring is not the time to switch practices. I do have
a friend referral to a neurocenter with 4 docs,onsite MRI and would be only a half hour drive.I am waiting to be more stable and will be demanding a Dr referral from my current neuro so when I switch I hopefully wont wait months for an a intro appointment!

[Elise1114]

Seek a 2nd (or 3rd) opinion

Yikes! I am so sorry!! You definitely didn't deserve to be treated that way and I have serious doubts about her ability to practice medicine.

I am on my third neurologist, thankfully a MS specialist.

The neurologist who gave me my tentative diagnosis was very sweet but admitted that he had no other MS patients in his practice and suggested that I find one who may have more experience.

My next neuro boasted that he had treated over 500 MS patients and then gave me one of those 5 min physical exams, glanced at my MRI for about 30 seconds and confirmed that yes, you have RRMS. Then while we were trying to ask questions, proceeded to take personal phone calls while my husband and I sat in his office in shock.

His solution to anything I was experiencing was a variety of narcotic pain relievers. Apparently if you're in a stupor you don't complain as much!

I finally started seeing my current neuro a year ago and have never felt better. I'm on a vitamins and medicines that actually work and allow me to function at the same time.

Please keep trying until you find one that truly listens to you and works WITH you to find out what treatment best for you.