My appointment at the MS clinic, I don't have MS

[summerluvr]

I just typed out this whole thing and this website always freezes and screws up my computer so I have to reboot it. Hope this time It works or else I give up.

I had my appointment at the clinic today.  The way it works is you meet with the clinic doctor, do history and exam, then you have evoked potentials tested, then you meet the head doctor of the clinic.

So I had an MRI three weeks ago which was normal.

I was referred to the clinic by my urologist, because of the bladder retention I have (not common in a young female patient I gather)

My past history:

eyes: July 07 had some eye headaches, then noticed lightning bolts and seemed like someone had thrown glitter in the air. After a few weeks is resolved, but then I noticed everything is foggy all the time, like my glasses are steamed up, worse when I work out or get hot. Sometimes feels like I'm wearing a black veil.

Hand, significant tremor in right hand, and fingers and top of hand go numb, finger tips burn. Comes and goes, but tremor mostly there.

Legs, right leg weak on stairs, dragged ball of foot on ground when walking. Need to use railing to pull myself up the stairs, sometimes feel like walking on someone else’s leg. It gives out. Been like this for 6 weeks, also last spring for about a month.

so I met the clinic doctor and we went over my history, then did an exam.  

Arms:  unable to hold right arm out in front, arm shakes bad then all the muscles tense up, hand turns into a claw, and arm sinks down.  Unable to touch right finger to nose, (overshoot finger).  Unable to flip hand back an forth on leg.  Left arm normal.

Legs. left fairly normal reflex at knee when tapped. Left foot, toes point when bottom scraped with pin. Right leg, when tapped with hammer leg jerked around and spased up, very weird. Like it freaked out when he hit my knee. did it every time, lieing down or sitting at edge of table. When laying down on table, had trouble finding the knee on my left leg with my right heal. Foot had no response when scraped with pin.

walking:  heal to toe no problem. normal walking, ball of foot touches ground when stepping with right leg.

eyes: I am unable to follow finger, but I can see how many fingers.  I have congenital strabismus and had two surgeries so my baseline here is unable to track well.

So after the exam we talk about my results.  He said the exam looks normal.  He said my right arm has essential tremor and does someone else in my family have it? no one does.  He said he has no explanation for my eyes. He asked if I get migraines, and if I can keep working when I get one? or do I have to lie down?  Did I ever have this vision symptoms from migraines, or my leg going numb.  I say no.  I get migraines, I get visual warnings (everything gets really bright), and I get really overheated and have to go home an lay down. Last one I had I took percocet because it hurt so much (in November). So then he said he thinks the exam is normal and I should follow up with the Urologist for more nerve testing to confirm the bladder retention. I told him I was unable to go last time they tried, and they had done ultrasound to measure it. (Of course I will be following up with my urologist next week, not being able to pee is not exactly something easy to live with).  So he says maybe do a spinal MRI but he doubts it will show anything.

So then I go  for evoked potentials. Everything tested ok, my optic nerves are fine.

Then I meet the head doctor.  He says you don’t have MS, your mri was normal and the testing was fine.  He does not know what my problem is.  I say it’s hard with dealing with this stuff, I would just like an explanation so I can go ahead and deal with these symptoms.  He says, I shouldn’t want to have something like MS. I said I never said I had it, I am here because DR. Stewart (urologist) arranged it.  I just want to deal with my symptoms, it’s hard having stuff all at once. If it was just one thing I could probably just ignore it, but I am a young person, I’m not prepared to just accept that I can’t drive a car, or go to the bathroom. It just seems like one thing after another. Then the dr. says (I quote) “ lots of people are walking around with symptoms they never get answers for, we see them here everyday, I tell them if they ever get diagnosed with anything to let us know, and they never let us know”.  So I told him I am 31 years old and not able to just accept that all of a sudden all this happened to me for no reason and to just live with it.  

He then asked what my top three complaints were if there were even three. I said my bladder my eyes and my leg, or hand. He asked me again I said my bladder my eyes, and at this point my leg. He then told me well dr. M. thinks you should have a spinal MRI, so came back and see us after but I doubt it will find anything. As he is showing me the door I asked, well what about thyroid or something could that cause these symptoms.  He says, have the spinal first then come back then and we will talk about it.

[summerluvr]

Last summer I saw an ENT because I've had vertigo for a year and half, (basically the same time I have had everything else)  I had popped my ear drum last year winter from a severe ear infection, but he said the vertigo was not related to the rupture because it healed I still had the vertigo (seems to be not as frequent now, but I get the odd spell, usually when I get overheated like in the mall wearing my jacket) ENT said it must be related to my eye issue. VNT test was "normal" but I have trouble tracking lights and I already have nystagmus since childhood so I'm not sure how useful that test was for me.

I have had several pelvic ultrasounds, and urine cultures, before seeing the urologist.

And I have had my eyes checked by 4 or 5 different doctors.

I saw a previous neurologist for carpal tunnel testing and was told I don't have that (funny my right hand is numb as I type this)

I think I had blood work last year at my yearly physical and it was normal, aside from low iron.  

I have seen a lot of different doctors, I think I'm loosing count (or my mind.. lol)

[essdipity]

What everyone else said.

Also, though, wait a minute! Your thyroid hasn't even been checked, yet they'll spring for an MRI? What else has or hasn't been ruled out?

ess

[PastorDan]

Amen, Sally!

[Salamander2]

This is so common it's ridiculous.  You sound alot like me,  my first Neuro said all my symptoms (and my abnormal MRI) were a result of migraines.  Except for the fatigue,  for that he recommend weight loss.  Grrrrrr. I have been so fatigued,  I sleep for 12 hrs, up for 3 or 4, then a 3 hr nap.  Rarely left the house except for work.
Went to a new Neuro, she told me at my second visit that she recommended my starting a DMD.  Praise the Lord,  she actually listened to me and told me my MRI was not abnormal because of migraines.
Discuss this with your GP,  mine was the reason I got a 2nd opinion.
And guess what?  I went shopping yesterday and today rearranged my bedroom!  Keep looking for answers.  There is a doc out there who will take the time and effort to find out why you are having all these problems.  Then be sure to let that "other" doc know about it!

I thought I was done with this post, then started thinking and getting angry (that's the smoke you smell) ;) Why is it okay for a doctor to send a patient away without any answers or any hope?   And with such disrespect and lack of compassion!  And the topper?  YOU HAVE TO PAY THEM!!!!  Don't they take an oath to help people?  If I did my job that badly,  I'd get fired.  

Okay, now I'm done.......
Blessings,
Sally

[jensequitur]

It's sad, because this story is so familiar - a doctor decides that you're not sick, despite the evidence of symptoms.  I would definitely go head and get that spinal MRI, but consider finding another neuro to really help with symptom management.

[summerluvr]

yeeh seriously. I'm working at not taking this personally. Luckily I have a good GP (general practitioner,  is our family doctor up here) and at least my urologist will treat me.   I called his secretary and she said I could make an appointment whenever, but she suggests waiting until after this MRI. Last time I saw him he was sure I would be getting care from the neurology department instead of  from him. I didn't like how the clinic doctor totally blew off my bladder symptoms,  like I was making it up, when the urologist is the one who diagnosed the condition and wrote  a detailed referral.  And he called my freaky leg normal which I find a bit odd.

[biowham]

What an *******. He acts like he's collecting data but then leaps straight to his conclusion in the absence of said data, saying your spinal MRI will be normal. He ignores what you're saying, obviously appears to doubt that you have three things even to complain about, and completely dismisses bladder retention, which is NOT normal. Go to someone else. I'm getting really leery about the number of "MS doctors" we're reading about here who are just so dismissive and patronizing. I bet if these things were plaguing him, he wouldn't just think to himself, "Oh, there are so many people walking around with inexplicable symptoms, I think I'll just ignore what's going on with me." Bet he'd be knocking himself out trying to figure it out.

Bio

[Lulu54]

Hi,
That attitude frosts my cupcakes!  there is no excuse for any doctor to dismiss any patient that way.... I wonder what diagnostic code they use on the bill for *just accept it*

Later,
Lu

[goofysmom1]

These statements make me so upset.   "lots of people are walking around with symptoms they never get answers for, we see them here everyday" - I heard something similar when I went to a well known clinic...I just don't understand how callous these doctors can be.  If they were the ones dealing with these symptoms, how would they feel if they were told the same thing?

Keep on pushing until you get some answers.

Good luck & Hugs,
Chrisy
undx

[PastorDan]

Did he say anything about not letting the door hit you on the way out?