Curious, confused, afraid I'm hopelessly lost in Limbo land

[rendean]

Ok, two neuro appt 5 days apart, both with minimal abnormal exam. Both times I had no to little reflex at the left knee but normal relfex on the right. Left leg is also weaker than right and has been for at least one year but only slighty so: 4-/5. Have other neuro symptoms, parathesias, MRIs with small UBO, one of which is perpendicular to the periventricular space and another in the corpus callosum, intermittnent incontinence (bladder and bowel), negative EMGS, muscle cramping, dysarthia,yadda, yadda yadda. My concern is the left sided weakness which doesn't seem to fit the MS wild goose they've been chasing for 3 years. Anyone have any similar symptoms/experiences to share in either direction? I'll take any diagnosis at this point, just stop all the head scratching and saying this doesn't fit.

Bright side, new neuro who is setting up urodynamics, SSEP , etc. but today's local neuro just seemed befuddled and I'm afraid his lack of diagnosis is just adding to my already high frustration level. MS "expert" says treat, local neuro isn't convinced it's MS thinks peripheral (CDIP) and new neuro will discuss it with me in 3 weeks.

Does anyone have anything to enlighten me? The support is great but lack of knowledge is driving me batty. I research what I can but a full-time job and family is leaving little room for the real research I'd love to do? Suggestions?

Thanks!

Rendean

[doni54]

Hi,

Well, you've gotten some good answers here.  Quix has always made a point about the one side versus both sides being involved.  She always says that when both sides are involved, it doesn't point toward MS, but one side involvement does.

She did a long post about this explaining why.  I will do my best to find this and bump it up for you.

I have problems with both sides now, but my weakness started in the right side and now my right side is the worse.

I know how frustrated you are and how confusing all this is, but you are getting close to that dx, I just know it!  Remember us Southern women are tough!!!  You WILL get through this and get your answers!!!

Love & Hugs,
doni

[rendean]

Thak you for the answers. This attempt 2 at posting, just lost the first one, dang it! Anyway, I apreciate the support and answers you gave. I should have clarified with the local neuro yesterday but with the discussion of "this med for that symptom and that med for this symptom" along with the discussion about tomorrow's cardiology appt, the question regarding the left hyporeflexia and weakness versus the right normal reflex got pushed to the side.

I have an appt. with the academic neuro on the 25th. This appt. "is to talk about some things". Guess so since I only got to question 2 out of 15 on my list. It's just frustrating not knowing what's going on. Is it perpherial or central? What the heck is it since the symptoms are increasing? There have been too many cooks in  this pot and I need to know what's for dinner.  The 25th seems a long way off when you're near the breaking point.

Again, thank you for the support. It's appreciated more than you know. I'll keep you updated.

Rendean

[spitfire989]

I agree with what the other's are saying.---Yup, MS will and can pick "whatever: part of your body it desires.---I too have left leg issues along with the others.---My left leg is my shaker---ESPECIALLY 1st thing in the morning when I get out of bed.--Ugg!---It gets better, relatively quickly,--but just the same--ANNOYING.---My right leg is my "thumper"---thumps pretty much when it wants.---When I "stretch" it out===when I'm driving and go to apply the brakes--(always very interesting in heavy traffic)--(it's like,--gee Officer, I hit that car cuz my foot was thumping!  I'm sure that would go over good!) hehe----My MRI was "peppered" with lesions, and my LP was 1/2 and 1/2, as far having "certain" markers for MS.~~~What meds are you on now to help with any of the symptoms you got now?~~~~And hopefully the Neuro you got now is good or fairly good.----I have to say my Neuro is exceptional and keeps in close contact.--In between my appts with him ( which now cuz of the DX is once in awhile) BUT every Monday and Friday he calls me at home to see how I'm doing and if I have any questions, or to see how whatever "new" med I may or not be on is doing.----But, the long of the short, is "YUP", MS plays around with whatever part of your body is chooses to.--And hopefully you'll be able to "Push" your Neuro for answers and be able to go from there.-----------I WISH YOU THE BEST!~~~And let us know on here, how your doing ---cuz we all care!

[amyhue]

My chronic Pain, weakness, numbness, tingling etc. is all on the left side of my body and has been for years.   MS can show up any way it wants.  Why not on one side?  I do have some peripheral nerve stuff, but I also have lesions on my brain, fatigue, confusion etc. My spinal tap is still clean, but that doesn't mean anything.  If it clucks like a chicken, walks like a chicken, tastes like chicken, it's probably chicken!

[rendean]

The MS neuro is one who doesn' t do a neuro exam. the closest he came was the 1st visit 2 years ago and all he checked for was ankle clonus. He is itching to start SOMETHING for treatment. A year ago he was convinced Copaxone then IVIG since I presumably have Sjogren's as well, then back to copaxone. When I asked a few intelligent questions regarding endpoints in IVIG versus copaxone he said" the more I talk to you the less I want to treat you with drugs". Go figure. that was last December then these 2 back to back appt and I'm losing my mind. The academic neuro is systemically investigating the symptoms, i.e, urodynamics, new rhemy to rule in or out the Sjogrens (I'm sero negative). Anyway the list is endless and my limited reading stated that hyperreflexia was consistent with MS not hypo. The academic neuro seemed uninterested by my report of the corpus callosum . Since the CD of my current MRIs would not open and ALL my medical records were lost by this wonderful academic center I was without an answer. I don't' want MS but after so long and worsening sx I'm tired of the game. Brain fog has set in (or is it sheer exhaustion and worry) but it's reflecting in my work product. Sorry for the rambling and the typos.

So, hyporeflexia is possible, one sided in MS?


Thanks for answering me!
Rendean

[biowham]

Peripheral theoretically should show up on EMG; this is esp true with CIDP. Also, with that you'd be getting notably progressively weaker, I'd think, and not just on one side. Why wouldn't you have left-sided weakness with MS? That one-sidedness seems more likely with MS than with CIDP. The t2 hyperintensity on the corpus callosum is signficiant. Also, why does your local neuro get to trump the MS expert?

Biowaddles