I am so demoralized and confused

[biowham]

I first went to my doc because I was having numbness and paresthesias in my foot creeping up my leg--shocks, etc.. He kicked me over to a neuro and we threw my RSD left hand and presumed carpal tunnel right hand into the referral because...she's a specialist in carpal tunnel. She did a bunch of tests and sent me for an MS protocol MRI because I'm heat intolerant, +Romberg's, hyperreflexia, etc.. Her final writeup on that visit and what I was told during that visit do not jibe in many respects.

The MRI came back with "several" T2 lesions, three of which were 3 mm or more, all periventricular. There are two punctate spots also, one looks in the U-fibers and one on the cerebellum. C, T, L spine were clear, except for flattening of the spinal cord at T6 and T7, but NO nerve entrapment anywhere.

LP was negative, all normal. Neuro 1 said, "MRI in a year." I made an appt with neuro 2.

He dismissed the MRI findings completely...describes the MRI as "normal," even though the neuroradiologist said, "Cannot exclude MS." He identified "pathological" reflexes in lower extremities (hyperreflexia), but decided that I was "making up" weakness in my right hand (conversion disorder). THAT REALLY PISSES ME OFF. First of all, I'm too old (39), too well educated (PhD in science), in too high of a tax bracket, and far too stable to have a conversion disorder, (the opposite of these things are risk factors), not to mention the fact that the right-handed weakness has been around for YEARS and that there is no precipitating stressful event (conversion disorder usually is a few weeks' duration unless very severe, and there usually is an identifiable precipitating event or motivation). Yes, I know my conversion disorders because I have written an entire encyclopedia of psychology.

He wants to send me for a CT/myelogram b/c of the thoracic compression. He thinks that might provide an explanation for the lower extremity symptoms. I made the appt today, but I'm still debating. He may be right..the cord IS compressed, big time, and it's not ventral. And it's compressed in two separate places.

I also still have a f/u appt with my original neuro that my husband thinks I should keep. I may, just to see what she has to say. But she doesn't look at MRIs, so I can't really ask her if she thinks they're something to dismiss. I think she'll say, "OK, let's look at your MRI in a year," exactly what her assistant told me on the phone.

I'm confused and demoralized because one man thinks I'm a nut (he actually asked me if I've ever seen a psychiatrist and how I get along with my husband, who, by the way, is my soul mate), and because I can't reconcile my various symptoms, which include upper-body symptoms, with a thoracic conduction problem (entirely). It may be partly that. It may be that I'm just freaking lucky enough to have the thoracic conduction issue for my lower body, carpal tunnel in my right hand (although electrophys was almost completely normal; one reduced CMAP in right hand), and RSD in the left.

I'm confused also because he found things on his exam that the other doctor did not note, and vice versa. It's like they're throwing darts at a wall with their eyes closed, but I'm the target.

Anything anyone could add or say here? This is kind of getting me down. I don't care if it's MS or thoracic compression or three different neuropathies, but I DO care about the kind of care I'm getting. I just can't see getting my PCP to refer me to yet another neuro. Amers389 on here sees the same neuro I do (neuro 1), who sent her to the local MS specialist. Amers389 has T2 lesions AND four O-bands, and the MS specialist still told her she doesn't have MS, so I don't think that's gonna help me any to go to him.

I'm sorry this is so long. I've had a bad 24 hours since that jerk implied I was crazy. I still appreciate the fact, though, that he LOOKED at my MRIs and noted the thoracic compression. It may turn out to be a good thing.

Thanks, and happy Valentine's day to all.
E

[biowham]

Thanks for the feedback, sympathy, and suggestions. I am thinking about the PCP thing...he's a great doc and someone I've had as my doctor for 15 years. He, of course, knows I'm not the type who does "conversion disorder" things. Every single thing I've ever gone to see him about, or any doctor, for that matter, has been "real," and has often involved surgery for correction. He'd be sympathetic. I'm just not sure how many neuros there are to choose from in this town. A neurosurgeon might be a good option re: the T-spine thing.

I'm still trying to tease apart in my mind the differences between these two neuros and how these differences led to their very different reactions and conclusions. Their in-office tests were all different--hardly anything mutually done between the two--and their approaches obviously are very different. I know that I probably need a "tie breaker" here. I'm just sitting on it, thinking. That's kind of what I do before I decide these days. Strange, because I used to be far more impulsive.

In completely unrelated news, I went to an optometrist for an eye exam today, and my vision was 20-20! I thought maybe 40 was the magic number for getting glasses, but I guess not.

E

[MCBCON]

Man, I do not know how to express my horror at your situtation.  The more I read in this forum about these things the more i am further dispmqyed qt the medicql profession.

I am fourtunqte in thqt the othamologist/nuerologist i fist saw was pretty certain i had ms after looking at my retina.  he immediqtly hqd me see a nurologist/ ms speciqlist.

after an mri qnd my qpprovql i wqw diqgnosed with MS.  Too easy hey.


often:
q=a
w=s

[Momzilla]

Hey, E~

I am really pissed off, too.  Right there with you.  How absurd!

We hear this time and again.  I'm so sorry you're being put through this.  Of course you don't have conversion disorder.  So stupid!!  What is collectively with these dodo docs?  Did they talk together beforhand to see if they could make you bonkers?  It makes me wonder.  I don't know how to explain it otherwise.

Hang tough.  We're here to see you through another neuro and another day.

Zilla*

[AMO]

hi E,

i want to tell you, sounds familiar. While it is tough spending more energy than you  have. Withh abnormal mri, vng, exams,etc.. even a brain biospy showing neuroo disease, i had one neuro say i must have CD.... but not referal to a psych.

So i did on my own to put that to rest and stop focus in that direction. BUtIf that was my problem i wanyted to be treated according.Psych   was totally confused why. But she had been versed in neurology since she statred in that field,
Like Quix said to be your ally. So she calles the neuro (who she knows:) and wha la, then neuro doesn't mention CD again HA!

In their defence when someone presents to theem , they do need to evaluate the WHOLE peooson, mind included. BUT when evidence in favor oof neuro illnes is there, it is my understanding then CD is ruled out. I am glad you know this, so there is not self doubt.

I heart goes to you in your frustration. Hang int here, your  gut feelings and instinct knows, and unfortunat it is taking more time.... but soon
be well, amo

[hbananas]

If this kind of stuff happens to people like Dr. Wham and Dr. Quix, how do the rest of us stand a chance?  Your usual experience, as I recall, has been to speak with other healthcare professionals as peers and colleagues.  Would you be uncomfortable asking your PCP for another referral?  Or is it a d***n'd insurance thing?  Does the university/college where you teach have faculty with wonderful connections? Or are YOU that faculty member?  Can you just say to heck with it and go to Portland like Craig did?  Dr. M is going to have to add staff, thanks to Quix.

You have been so helpful and informative to all the people here, and it makes me angry to see you being treated this way.  If anybody can get to the bottom of this, it is you.
Holly

[Heather3418]

This kind of thing leaves me pulling my hair out.  I totally agree with Quix's assessment of this siutation.  This kind of story is becoming all to common and I for one, think that something needs to be done about Neuro's like this.  There is just too many of them, for this to be quirk.

Obviously your symptoms are NOT 'conversion disorder'.  As Quix will also tell you, the LP is not always diagnostic for MS.  Your MRI's and problems scream for an MS diagnosis.

And the doctor that "doesn't read MRIs?"  What is it that she CAN do?  Geeessshh!

As always, I offer you my sympathy's.  By the time most people are finally diagnosed, they have been having MS symptoms for years.  Lord only knows what kind of damage can be done from "waiting another year for an MRI," when it clearly cries out MS.  This has to be a form of malpractice and if it's not, it should be.

I am so sorry that you are getting the run around.  I really wish there was something that could be done with these doctors.  As I have said many times before, if it were their family member sitting in front of them presenting with this much evidence, would they tell them to come back in a year for another MRI?  I doubt it!

Heather

[Wobbly]

Hi, welcome to the forum... I can understand what you must be feeling.  I too have had a few specialist ask me if I have problems at home (which I'm very happy with my honey), stress, etc... they want me to have an assessment, which I do not mind doing as I'm not yet Dx.... I've had symptom for a couple of years now... I'm 54 woman.  My GP states it's not in my head, because of all the blood test that come back: positive ANA, high Sed Rate, bone marrow granulomas, monoclonal band in the gamma region....but the specialist cannot figure this one out?  Too many symptoms?   So hang in there and talk to your doctor...take care

andie

[Quixotic1]

I see your conundrum.  You truly need a 3rd opinion.  If getting the PCP to do it is the problem, then this post (revised to really show the absurdities involved) might do it.  Spell it out how far apart these two neuros are and what they are proposing.

I see the validity of doing the myelogram.  You need to know exactly what's happening in the thoracic spine.  However, acknowledging real disease in the lower extremities and hyposthesizing a psychiatric explanation for everything else that doesn't fit is preposterous!  It calls into question all of his thinking processes and all of his conclusions.  A neurosurgery opinion on the T-spine?

As for the wishy washy neuro who puts everything off until they go to someone else in desperation - well, you know how I feel about her.

Tell your PCP that what the 1st neuro said during the visit did not match at all what she wrote in her letter.  She doesn't read her own MRI's and seems to think that an interval of a year is appropriate in the work up for MS.  She's a flake.

Talk to your PCP.  The radiologist brought up the possibility of MS.  There are three lesions which qualify in size for MS.  And a hyperintensity in the juxtacortical U-fibers, as we have discussed, is fairly specific for MS.  The cerebellum is infratentorial and is another red flag toward MS.  Once there is this much data consistent with MS (and having nothing to do with the thoracic compression) you can't be expected to just sit and wait a year, not when the first two neurologists show so much questionable judgment.   Would your PCP be comfortable with these two yahoos' opinions?

Ask for a specific referral to an MS specialist,  If the 2nd neuro is an MS specialist, then ask for another one.  For the very reasons you listed and the ones I added.

Again, a shrink can become your best ally with their heavy training in neurology.  Do you know any professionally who would understand your dilemma?

Those are my thoughts.  You are now, or again, a charter member of Hypo Gamma Chondria.  Hey, Sis!

Quix