The visit with the Yale MS specialist

[CtResident]

I saw the MS specialist today. Let's say that at the start, I was highly impressed. I was there for around an hour and a half!!

There were three people in the room with me and my husband (specialist later). The PA took my info and told me to tell her everything, no matter how insignificant it seemed to me. Wow. Meanwhile, the medical student was glancing over my records. I did mention how the prior neuro had misleading info in his report. The other med student took my MRI CD to the specialist for her to look at alone (she never discussed it with me though.)

The first med student did a thorough neuro exam. With socks off too, lol. Althoughhhh, she almost forgot to do the Babinski, was reminded by the other PA. I was having left leg twitches, and seemed skittish. I told her she was going too fast, I couldn't process some of her directions. She had me say the alphabet backwards, which I felt stupid on, but I did it. Dh laughed when I got all discombobulated with the finger-nose-finger fast-as-you-can stuff, my left finger was missing things. All of the above took about 1/2 hour.

Anyway, the neuro came and she was not as personable as her staff. But, she did do a neuro exam all over again. Both of them had asked me if I watched the news. No. Sheesh, why? (I call it the Evening Crime Report.) I didn't mention that I READ the news online. I don't live in a bubble! I had to spell the word "world", forward and backwards though.

Bottom line: I do NOT HAVE MS. She wonders how my thyroid is. FINE. I had a complete CBC and other levels checked in December. She thinks it's something metabolic..........?? Please explain that to me, I don't get it.

She believes I would benefit from cognitive behavioral therapy, 10-15 sessions, to help me learn to live in my body. To help me adapt to this pain I am suffering, since I am rather anxious. What?!

**I don't even TAKE A SINGLE MED for pain!!!** I have burning and twitching and banding, not exactly pain.

Excuse me. My eyes were shut. She was poking me, I jumped. :-/ She used the reflex hammer, I reacted. If someone starts to poke you, naturally wouldn't you cringe? But my EYES WERE SHUT. I didn't specifically cringe because I knew anything was coming. Trust me, I was trying to make everything as casual and relaxed, so they could do what they needed to do, without me tipping the odds. Several folks yesterday mentioned here that I get a diagnosis, not try for an MS diagnosis. Excellent point! And I did my best.

Once she seemed to be done, my dh and I started in with our questions. I'm not sure, but I think she was implying that I am not comfortable in my self, that I overreact to stimuli. I blush easily, and I could feel my face turning red. With 5 people (including dh) looking at me. Joy.

She thinks I have Restless Legs Syndrome as well.

And here is where I made a bold stupid mistake. I told her that it had been suggested that I have RLS, and I looked it up online and no,I don't have that.

Dr. got her back up and told me that SHE is the DOCTOR, you can't do a checklist online and diagnose yourself. She all but gritted her teeth. I did demure to that, but then again, what if I read a checklist of symptoms on a piece of paper in her waiting room, vs. looking up the wemove.org website online, what is the difference?!?! I am still of the idea that she didn't need to get her knickers in a knot! She did go get a sample of Requip for me but more on that later.

With more discussion, she seemed to back off a bit and decided to include a thoracic MRI to complete my file.

AND really responded to the idea that my ferritin level was low. She had not looked at my labs, and there was a lightbulb over her head and AHA! appeared in her eyes when that came up. (my ferritin is a 5 on a level of 11-307....what kind of a range is that?!) But my iron is fine. I am confused.

Soooo....I am to take iron pills twice a day for 3 weeks (and MiraLax to help with iron-related constipation), have the T-spine locally, then see her in 3 weeks for the final let-go. Depending on the bloodwork to check the ferritin, she might give me the Requip sample at the next visit. She gave me the name of a local neuro for finding out what it is, if not MS.

I heard her tell one med student that with the upper AND lower hyperreflexia that I exhibited today, she doesn't know what it is, but she is SURE the t-spine will show it is not MS.

I looked it up and found this page on the Google search (upper and lower hyperreflexia). It was enough to make me tear up. The actual link is a bazillion characters long, so I can't really attempt to post it, but the info was eye-opening. It mentions lesions of the brain or brainstem.

Enough for now.

Thank you to all of you who have held me up and prayed for me. I keep telling God I will do His will, maybe the Journey is ALSO part of that process huh?

Suzanne

[CtResident]

Well, me being the online curious sort, I did do a search on her name, and the 3 reviews I read all had the bar graph putting her up at the excellent end of things.

I told my dh that when I walked into the waiting room, everyone there either had a walker or was in a wheelchair. Now, this was a Neurology waiting room, not specifically the MS waiting room. But I wondered if I didn't fit into her preconceived idea of what MS is.

GRANTED, my test results have all come back as normal! I understand that.

My dh was telliing his Mom about the visit: the dr. says she doesn't know what's wrong, and right in front of them all, my leg is twitching and spasming.

Hopefully by the end of April this mystery will be solved. (Next visit to Dr. P is on 4/22.)

Suzanne

[Freespirit24]

From reading what you wrote it does not seem to me she can rule out MS so readily. The Hyperreflexia needs investigation because that can cause spasticity which can be caused by lesions and MS. The Doctor seemed to me dismissive and to be showing off for her students, specially if your referral was to check for possible MS.

I think they feel threatened by the Internet and try to discourage patients form using it, in fact I think they sometimes use that to say a person has psychological issues.
Be good wouldn't it to have profiles of all the Doctors before we went so we knew how to handle them!!!! *LOL*

Keep us up to date Suzanne

Hugs

Sarah

[CtResident]

At the risk of being biased by gender, I thought that having a female neuro would be helpful.

If only I could blend her staff's thoroughness with the prior neuro's smiling (though inept) ways, I'd have a wonder-neuro.

Anything less makes me want to.........use profanity????

LOL.

Suzanne

[biowham]

Sorry about the profanity...that slipped in there. I don't know why it didn't get ******* out. My apologies. This whole "doctor treats patient as psychotic child" stuff really annoys the **** out of me. I asterisked that one myself.

[biowham]

Even if you *do* "overreact" to stimuli, that's your freaking physiology, and she ought to work within that context, instead of accusing you of somehow having responses that are too fast, as though that's your fault. She's a goddamned doctor, she ought to know way way better than that. Some people have very quick reflexes and reactions, and some people do not. That's a matter of physiology and processing, not comfort in one's own skin. I'm extremely comfortable with myself and have incredibly fast reactions and reflexes...and that's not something pathological (and by "fast," I do not mean "hyper" or "brisk," just quick quick responses). My husband and I once took a little "reaction time" test at an interactive museum, and I had a reaction time that was many times faster than his. And honestly, I'm definitely the more comfortable of the two in our respective "skins." What nonsense.

If somebody, ANYBODY, but especially a doctor tried to tell me that I *could not look things up online*, I would get up an walk away. That would be the end of the conversation, right there. I don't play with people who act like one of us isn't an adult.

I have upper and lower hyperreflexia. Some people simply have brisk reflexes all over. The relevance of reflexes (with the exception of an obviously pathological response, like clonus or Babinski's) is that there is a problem if they're asymmetrical, i.e., right differs from left, or upper differs from lower.

Bio

[humming4u]

wow, what a horrible dr visit, and you tried so hard girl, you really did.
i am the same as I'm on my journey too, for 2 and 1/2 years, and I tell God the same. but, were allowed to get weary of the battle,and wish for it to end.i have no great wisdom to share about how to change where you are now.but i will pray for you.remember you can always lay it all down at his feet,and lighten your load,and be renewed to head on out again.
i  would be jumping all over the place if poked with my eyes closed, and then instead of blushing...I'd start to cry,it would be(and has been) all over by then huh?
take care
                                 humming

[CtResident]

Elaine,

Between you, me, and the four walls of this world wide web (lol)........

eek,

I almost DON'T want to do the iron therapy, just to prove her wrong.

There, I said it, what a little rebel I am.

Oh, and another thing. She'd ask me questions, and I try to make eye contact and be attentive, a good patient. Polite, never interrupt, etc. She had this boredddd look on her face and seemed to be staring into space. I had only said 3 or 4 sentences! Why was I being tuned out.

Now, I often strive for fairness, perhaps she was puzzled over the uniqueness of me, lol. Maybe she was just thinking hard about what to do for me. And I only saw it one time. But boy it got me angry deep inside.

Sassy Suzanne
P.S. I took one iron pill already, trying to be "good" and uhhh, "compliant".

[monotreme]

Well, Suzanne, I feel your frustration and disappointment.  When the doctor reacted poorly to you mentioning looking things up on the internet, I would write her off then.  That happened to me with a nurse practitioner at an endocrinologist for my hypothyroid disease.  She told me that I was not allowed to ever look up something about thyroid. and  that everything I was to know was to come from her mouth only.  I never went back.

I think the neuro  jumped on the only abnormal result you have.  And I would dismiss that idea that you don't feel comfortable in your body.  It sounds like she has the attitude of a woman hating doctor.  Who has the right to tell anyone that they don't feel comfortable in their body??  Pretty presumptious since she just met you for crying out loud.

It's ashame that doctors like that are actually teaching bad habits to future doctors.

Let's see how the iron does.

Elaine