HELP! I need some advice...

[jenandherboys]

I'll try to be brief...This winter , I had 2 1/2 mo. of neuro sx incl spasticity, shock-like pain, pins/needles, nausea, vertigo, speech/language difficulties...all detailed in my profile.  MRI showed 2 sm. hyperintiensities, EMG/NCS cleared periph. nerves, VEP normal, blood work normal except Vit. D defic, LP normal.  Lived on muscle relaxers until sx's spontaneously resolved over about 3 days. Almost normal as of 2/14/10.

Fast forward...pain and tenderness in upper rt. arm since 4/1/10 accompanied by shock-like pain in fingertips of rt. hand.  Sudden appearance of tightness/pressure/discomfort on right side rib cage on 4/10/10-also had more painful "shocks" in various parts of rt. arm and rt. thigh as well as spasms in same and in throat and area under tongue. This rib pain/squeezing is made worse by hot showers and now having more leg sx like before(heaviness, weakness, spasms...).

Of course, extreme fatigue rounds out all these sx.

My neuro (whose response last time was "I can't find any neurological reason for your sx") is out of the office until Monday 4/19, so that is the soonest appt I can get.  Any suggestions on how to get him to understand how much this affects me?  I have three boys (10 1/2 and 4 1/2 y.o. twins) who need their mom and a husband who is afraid to show how concerned he is because he is trying to stay strong for me... I thought I was out of the woods in Feb. when this suddenly went away...not so much.

My neuro has run just about any blood test/CSF test you can think of, so now we need to think out of the box...and maybe another MRI, too??  Is there anyway to get closer to a diagnosis on clinical observations and an iffy MRI from last time?  I'm getting so frustrated and it's not easy to get through to my neuro when I have questions.  Any advice on how to make the most of my time with him next week would be most welcome.

Thanks for taking the time to read my post.

[jenandherboys]

Quix and Audrey_m,

Thanks so much for your comments and advice; I will be sure to include many of your suggestions in my discussion with the neuro on Monday.

Found out on Friday that my DH will be able to get the afternoon off and go along with me. Now, if I can just get him to open up and talk to the Dr when we're there...that would be a real accomplishment!  LOL!  

Quix; I'm with you-I hope this guy is the one to see the big picture...he definately has the reputation to qualify him as astute-even downright brilliant-but we'll see how that translates into my appt.  I still hold out hope that the "good vibe" I got on the other visits with him was accurate and that he'll pull through for me in the end (or beginning, depending on your point of view).

I've got to work all day tomorrow, so it's time to end this post and get some sleep.

Thanks again, and I'll keep you all posted.

Be well!

Jen

[Quixotic1]

Jen - I was making the comment from the standpoint of - it sounded to me like she was presently with enough ifnformation for an astute neuro to make the diagnosis - rather than stating I thought her neuro would be the one to do it.

It sounds like the evidence is there.  I just hope that he can see it.

Quix

[Audrey_M]

Jen and Quix:

I'm trying to put together Quix's response "It sounds to me like you are pretty close to a diagnosis, IF your neuro is not a "lesion-counter." , with "I can't find any neurological reason for your sx". I've heard the latter too many times before and from experience have not had a diagnosis.

Not knowing Jen's neuro's speciality, I agree with others who suggested that she bring her husband or someone else with her on her next visit. Questions to ask are what possibilities have you ruled out? Given my sx, what are some of the other possibilities and tests you might consider to arrive at a diagnosis. You say that he has run a number of tests, but has he told you what he was looking for and how the results exclude certain possibilities?

If you have not discussed demyelinating disease, including MS, I would think your next visit is the time to do so. When you do discuss this, you might also want to ask how about his experience with these diseases and how many patients he has under his care with the diagnosis of MS.

Good luck. It is a hard journey. We all just want to know what is going on in our bodies and what we can and cannot expect for the future. The waiting is the hardest part.

[amers789]

Quix is right as usual, definitely helps to bring someone with you because I know for myself sometimes I get overwhelmed and forget to ask questions. A support person can keep explaining how many things are affecting you and taking care of your kids

I too am in limbo and it is very difficult when you have some positive or objective symptoms but then also subjective (what you feel) and they want us to wait until we are significantly impaired sometimes before they finally give a diagnosis.

Well, I am probably not a good person to support neuro's right now because of my story but I do wish you well and hope you find a answer very soon.

Take care Amers

[jenandherboys]

bump, please!

[jenandherboys]

Thanks for all the great advice and info.  My neuro definately did find poor coordination, spasticity, poor balance...and most of the other things you mentioned; the only exception being sx assoc with vision(as far as I know).  

To be fair, he is not really a "lesion counter" and did explain at my last visit that there can be much more activity in the brain than what is seen on the MRI. However, this WAS ONLY after weeks of continuous decline following an initial appt.' when he told me not to "get too excited or worried" about the MRI since the spots he showed me could be due to other causes like migraines, infection...you've heard the rest.

I have a feeling he was waiting to see what happened after my symptoms spontaneously resolved after 2 1/2 months of decline.  The best analogy I've come up with for his comments at my last visit is that of a puzzle where you have all the pieces, and they all fit together perfectly, but most of them are missing the image on the front so you can't make out the "bigger picture".  

In other words, on paper, everything fit, but we didn't have all the documentation we needed to back it up. ...at least, I hope that's what he meant.  (I usually don't misinterpret or misunderstand, but this brain of mine hasn't been crystal clear 100% of the time lately, LOL!!)

Thanks again for your response. If nothing else, at least it gives me a little validation that I'm not making this into something it's not, or overreacting to the symptoms I'm experiencing.  

I'll check back after seeing my neuro on Monday...or maybe before if anything changes.

Stay well!!

Jen

[Quixotic1]

Hi, Jen, I don't remember if we have talked before.

It sounds to me like you are pretty close to a diagnosis, IF your neuro is not a "lesion-counter."

It helps to understand what the necessary parts of a diagnosis of MS are.  These are for diagnosing RRMS the most common kind.

First the neuro looks into your history for evidence of two clinical attacks.  A clinical attack is the pateint's report of symptoms suggestive of demyelination.  When you saw the neuro before you had only had the first attack, but your symptoms were ALL consistent with demyelination.  But, now you have had two attacks or episodes.  So that part is fulfilled.  It is called Dissemination (spread) in Time.

Then the neuro must examine you thoroughly to see if there are any signs on your neuro exam of abnormalities that indicate damage to the nervous system.  Examples of things that might be see on exam are hyperreactive reflexes, loss of sensation in an asymmetrical pattern, poor coordination, weakness of a muscle group, spasticity, poor balance, eye movement abnormalities, paleness of the optic disc when looking in your eye.  At this point we don't know if he found anything, but if you had spasticity he would have seen that along with the hyperreflexia.

At this point I don't have any idea what he might have documented.  If there were two abnormalities that indicated "separate" areas of damage in the central nervous system, then that part is fulfilled.  That is called Dissemination in Space.  He needs to do another THOROUGH exam when he sees you on Monday.  

Then the doc looks at the MRI.  The McDonald Criteria only requires that you have lesion(s) "consistent with MS".  They don't have to be classic, nor huge, nor any given number, though many neuros will only count lesions that are greater than 2mm in size.  You apparently have two of these.  They should be accepted as part of this illness you are having.  Something tells me your doc has dismissed these lesions as "normal."  Am I right?

Your one-sided "Hug" would be caused by a thoracic lesion, so you should have all the MRIs repeated.  Many spinal lesions are hard to image because of their proximity to all the CSF fluid.  So it is important to have the spinal MRI done on the highest strength MRI you have available to you.

Another test that might show an abnormality is an SSEP - SomatoSensory Evoked Potential of your right arm.

I suggest taking your husband to the neuro visit with you.  Tell him he needs to show the doc just how concerned he is at what is happening to you.  If your hubby can't attend, then be as clear as you can about how these symptoms are impacting your life.  If he says there is still no evidence and denies that there are changes in your exam, you can ask why he is sure that the lesions are not a problem, when he went looking for lesions and found some.

If nothing comes out of this visit, seek a second opinion.

You also need to get all the reports of your MRIs, and the images on disc if you can, plus the clinical notes of the neuro, plus the results of all the lab work that has been done.

We'll hold your hand.

Quix