MS Specialist appointment

[luverofrogs]

I had my MS specialist appointment this morning.  I am very upset because I blew it:o(.  I forgot almost all of what I needed to say.  I had typed it all out on paper, but when they made copies their machine messed up so they needed my papers again and forgot to give them back to me.  The exam was fairly short and simple and I did fine on most of it I think.  Most of it was taking history, but I would start to go through it and then he'd ask for clarification or ask a question and I'd end up skipping over everything else because I forgot where I was in the whole history.  I ended up only talking about the vision issues, joint pain, random nerve zaps, UTIs, my legs getting wobbly and heavy and weaving when walking.  I never even mentioned the sensation loss, numbness issues, fatigue, frequent urination, muscle spasms, cognitive and memory problems......everything:o(.  He said that I looked fine and that my MRI from last year looks perfect.  He said that it didn't sound like MS to him, which from what I ended up remembering to tell him, I'm sure it didn't.  He put me back on the med that helped me and said that when I have another attack or something new happens, to call.  I have an appt set up for six months from now, but he said if I'm feeling fine, I don't have to come.  

I'm so upset because I went through so much and waited so very long to get to this and I didn't help myself at all today:o(.  When I called to ask to have my old test results and papers mailed to me they did say that the dr would review them, so maybe there's still a chance.  I feel so stupid and mad at myself right now:o(.  

My husband ended up staying in the lobby because he thought they were just taking my vitals and didn't realize that I was going straight to the exam room.  He said I was back there about a half hour all told.  

[ShadowsSister]

You have gotten some very good feedback from Lulu and Rena, I hope you are feeling a bit calmer now, stress is never good for anyone... WHY waste your energy Kicking yourself?? Nothing good ever comes from that sort of thing...

Hang in there, know that we are all here for you, and Please be kinder to yourself... You have to become Your Best friend and best Friends never kick you when your down.. at least my don't :-)

Keep in touch and this group will do the same... You aren't alone...

Have a restful night and a love filled day tomorrow {{{{~!~}}}}

[luverofrogs]

Thank you for all the support:o).  

I was really upset, but I am feeling better now.  He is leaving the door open and does want to see me again.  He did help me by putting me back on the Gabapentin and wanting to make sure that it's adjusted if needed.  Those are very good things.

I will take a copy for them and one for me of any notes that I have next time.  That is a great suggestion.  I will keep the follow up appointment and will call if anything new happens or if I start going downhill.  

What I'm really hoping that he can do for me is remove the MS question mark. If he rules it out, I'm hoping he'll have an idea where I can turn next.  

[Lulu54]

It is so difficult to be in the spotlight and perform during these exams .... that oral history is important, but the doctor is also paying attn to a lot more than your story while you are answering the questions and recounting your timeline. the neuro is observing your vocal skills, your vocabulary, being able to change topics, and memory among other things.

Nothing in a neuro exam is as simple as it might appear.  

Please stop kicking yourself - even if you had remembered everything, with a clean MRI you are probably not going to get a dx.  You want to be absolutely sure that you have MS before they give you that label.  You want to be treated for the disease you have.

it sounds like this doctor is going to be good to work with - keep their office informed of anychanges.  Work with them on your gabapentin.  A followup in six months is really good news - they didn't point to the door and tell you to go away.

Its frustrating, but you are now well planted in limbo - I'm sorry you are there.

my best,
Lulu

[Udkas]

Hi,
I am so sorry that your appointment didn't go to plan.  It is hard sometimes when we have expectations of appointments and they don't live up.

Can you request not to have a student in on your exam if you wish?  Here in Aus. we get a choice.  Your appointment did sound quick, my first appointment took well over an hour, and so have some of my subsequent appointments but he has not "shut the door on you", he did not say you were making up your symptoms, or make you feel like you were wasting his time, so he still might be a keeper.

It is frustrating if you forget what you want to tell them and you know you only have a small window of opportunity to say what you need to.  I always take notes with me, usually a copy for him and for me, I give him one lot to read and then if there is something I really want to address more and he doesn't after reading my notes then I bring it up but I find my neuro seems to address everything I have on my bit of paper. or bits of paper, once I wrote him a book but he still read it :-)

Can you ring the neurologists nurse?  Where I go they have a team of specialists who will relay any questions or worries you have back to the neuro, hopefully they can give him the paperwork.

Don't feel like you blew it, I don't think you did. Keep your appointment and if you feel you are getting worse go back sooner.  It might not sound like MS but it doesn't mean it's not neurological and they can change their minds as symptoms develop and they get to know you better etc.

Take care,
Udkas.

[saveone]

Well I posted and I don't know where it went????

Just wanted to give you some encouragement...at least he didn't throw you out and is willing to see you again....that is good.

He gave you meds to help with your symptoms...another good thing.

Just make notes and prepare for the next time, either to talk with the nurse or at your next appt.

Hang in there,
terry

[luverofrogs]

Thank you:o).  I will give them a call tomorrow and talk to them.  As you said, this is just the beginning of the process.  He didn't turn me away, so that's a good thing.  I can understand him wanting to see what I'm like when I'm having an episode.  Today, he got to see me doing pretty well.  Seeing me doing well and then not doing well will hopefully get the wheels turning to figure out what is going on.  I can understand wanting to see the changes for himself and it being hard to know exactly what is happening from a description.

I'm feeling better about it all now that I've had some time to think it all through.  He did put me back on the Gabapentin which will make my daily life MUCH better and I'm very thankful for that.  He said that he really didn't understand why I was taken off of it to begin with and talked a lot about how safe that it is.  He said that if I feel that I need to adjust my dosage on it, just to let him know and he can work it out for me.  That's a big plus too.  So, it wasn't what I was hoping for or expecting, but it's still an open door and some positive did come of it:o).  

[Wobbly]

hang in there... I also wanted to say that on two of my visit, I also had a student Dr sitting in and listening.  

the Drs know that we cannot remember everything as well.  The first visit sometimes is just the beginning of the process.  Call them and let them know how you feel ..

take care
wobbly

[luverofrogs]

Thank you everyone:o).  I think that I will call in the morning and talk to a nurse about seeing if the dr will read my timeline and notes that they made copies of.  My neuropsych results were part of the paperwork that was being copied along with notes from the eye dr. I hope that he will review them.  I had a list of findings with the neuropsych exam, so that really does need to be looked at I think. I will call if anything comes up too.  My primary dr is trying to get my medical records still and I'll get copies of all past neuro notes once the records are found (long and frustrating story).  

I'm hoping that next time will go better. I didn't think that it was a very involved exam either.  It did make me uncomfortable having that other dr sit in on the appointment and just mutely stare at me the whole time.  

I guess that the falling over must not have seemed to be a big deal to him.  I was pretty wobbly to the left doing the heel to toe walk, but did manage to do it.  

I'm just horrible at recalling things out loud:o(.  Trying to remember 11 years worth of symptoms and relating it out loud is very hard for me.  I wish it wasn't:o(.  I did have it all typed out, but they had my notes in the office making copies for my chart:o(.

[Wobbly]

by the way...it took a year before I got a DX at the MS clinic... they were watching my progression...good or bad...etc.

wobbly

[Wobbly]

this does sound like a quick first visit to a MS specialist office... I was around 2 hours on my first visit...came out with no answers and was told to call if things changed, or come back in 6 months...just like you heard.

after a few weeks, I felt worse with Vertigo symptoms at that time, but I called them and told them, I also call my GP... who presc Prednisone.. which helped... but the MS clinic wanted me to come in and see the specialist.... so I went and told her how I was.

She recorded things and did another exam etc...
it's good that you could call them when your not feeling good...so if you feel worse with symptoms, call them and let them know.  The nurse will record all on your files..or should record it. And let you know if the specialist would want to see you earlier..

take care and hang in there ... your not alone hon

wobbly
dx

[Rena705]

luverofrogs...please give this neuro's office a call and ask if you can speak to the MS nurse if they have one.  If not, please relate to the receptionist that due to the speed that you were pushed through this appointment with you were unable to relate all the important symptoms you have been having.  Ask if there is an email address that you could send your further information to.  Don't give up honey...keep on this neuro's doorstep because if you can get the pertinent information to this neuro...this one could be a keeper.  Let us know how you make out ok?

Lots of Hugs,
Rena

[steph74]

It just doesn't seem like he did a very thorough neuro exam on you.  I've always heard that you should expect your first visit with a neuro/MS specialist to take an hour or so.  If he only spent 1/2 an hour with you, it wasn't enough.  (Sorry if my post sounded like I thought you had the timing wrong, I was more upset that he would give you such a cursory exam.)

Does he know about your neuropsych results, too?  That also sounds relevant.  Did you like him?  If he was nice and open sounding, you might call and say that you don't feel like you accurately covered your hx, because you didn't have your notes.  

(Also, it doesn't sound like your neuro exam was "fine" if you fell over with your eyes shut.  Why would he say you look fine?  Did he note that this happened or anything?)

[luverofrogs]

He did have me touch my nose with my first finger of each hand with my eyes closed and did scrape the bottoms of my feet (which HURT).  I forgot those in my list above.

[luverofrogs]

((((((((((((((Big hugs)))))))))))))))))))))  I hope that you can find answers and get help soon.  I am in limbo and have been for over 11 years, so I can't help too much.  Neurotin (Gabaentin) does help me and at least the dr today did put me back on it.  

[luverofrogs]

This was my first appointment.  I knew it wasn't very long that I was back there, that's why hubby didn't realize that I had been seen.  Hubby said it was about a half hour from when I went back for my vitals until I came back out to the lobby after checking out and scheduleing the 6mt appt.  

The exam was reflexes on knees, elbows and ankles, having me squeeze his fingers one both sides at the same time, looking into my eyes (this took the longest), holding his hands off to both sides of my head about two feet from me and wiggling his fingers and asking if I could see his fingers wiggling, six steps heel to toe walking, standing with my feet together and eyes closed (I fell to the left and open my eyes and caught myself) and  tracking his finger while he traced a 4 in the air.  History taking was rather open ended which always trips me up.  When he asked questions, I lost the rest of what I was going to saw about whatever attack I was talking about since he wanted to know what happened each attack.  I left out pretty much everything and what I did talk about I didn't really convey how serious it was at the time like the time I ended up in ICU for a couple days and in and out of ERs and hospitals.  

I'm glad that he did leave the door open, but I feel so frustrated that I wasted $75 plus gas and food for the trip there today to blow it:o(.  

Thanks:o).  I'm hoping that next time, I'll have my papers in hand and can stay on track better.  I am awful with trying to recall things orally.  That even is one of the findings of the neuropsych exam I had last year:o(.

Also, there was another Dr in there today that just sat there staring and listening and that made me feel a little on the spot too:o(.

[paralegal83]

I too had an appointment today with a neurologist to get to the bottom of my issues. I have had numbness in my shins, thighs and hips for about 2 years off and on. At different times I had vertigo, ridiculous fatigue and slight vision issues. In the past 4-5 months the numbness has progressed and now I have it not only on the legs but my stomach, back, shoulders, arms (mostly forearms), neck and sides of my face to my ears. About two weeks ago i suddenly had the worst vertigo yet, double vision, reduced color vision, and problems speaking (with saying what I was thinking more than slurring but overall speech was slowed and I would say every few words but not those in between), stiff neck so bad that I could barely move it and more facial numbness. I was referred to neurology who ordered and CT and MRI. The CT was fine and the MRI showed a "Few small hyperintensities". When I went to neuro today i had to tell him that since our original convo. I have had intermittent burning pain in my arm near my elbow and the back of my neck kind of between my shoulderblades...the pain seems to coincide with a stiff feeling that makes mobility difficult. He immediately started in on the arm pain saying that it is likely to be caused by carpal tunnel. Although he admitted that obviously couldn't do the other things he said that "takes care of the arm issues". He then basically said all we can do is wait 3-6 months and repeat the MRI to see if there are any changes. I asked about doing the MRI of my spine and he said that was unnecessary although from what I understand many of my symptoms (including the one that began today (dragging my right foot slightly and having that leg feel very heavy) can be caused by lesions in the spine even when there are no lesions in the brain. I'm only 26 and the past 6 months I am rapidly declining....I'm looking to hear from anyone out there that has had a somewhat normal MRI (showing very small abnormalities if any) and that has similar symptoms. I am pretty desperate to feel better since the pain is pretty debilitating and I have been so tired on occasions that I couldn't get out of bed all day.

[steph74]

Really?  You were in and out of the MS specialist office in 1/2 an hour???  Was this the first time you saw him?  My first appt. with my new neuro was 2 hours, including taking history, exam, everything.  You'd think at a minimum the neuro exam should take 1/2 to 1 hour, not counting the hx taking.  Doesn't seem possible that he examined you all that closely.

BTW, many of the sx you did mention to him do sound like MS, though perhaps the order, or something about the way you described them don't sound MS-y to him.

At least he left the door open for you to come back if things get worse or change.  He didn't tell you to see a different neuro or anything, and that's good.

Don't beat yourself up.  If things get worse you can go back to see him again and explain your whole hx of sx again--tell them you'll need a little extra time when you make the appt because you weren't able to cover everything the first time.

Stephanie