Neuro say, No MS in spite of lesions, symptoms
 

Saw MS Neuro today, 10 months since the last appt where he wanted another MRI and was so concerned cuz I had new symptoms. I have always had lesions, they didnt change much until 2005, the radiologist saw a NEW lesion on the Pons. No one mentioned this, so I brought it up to him today.Yes he knew exactly where on the PONS too. Ok ok so he looks.

But since to him my neuro exams dont warrant a DX he wont even check this out on another MRI, or do a EMG on my poor legs, the one on my arms is positive.

My balance, cognitive, speech, memory, and fatigue have improved since seeing the nutritionist and having 2 prednisone txs. He thought that was great.

He does his neuro exam today. My right side is slightly ,weaker, I cannot do the heel to toe, nor walk on my toes as my ankles have locked up with my spasticity being worse. The tingling in my face returned after 4 years which is what brought me to him 4 years ago, along with other symptoms.

The buzzing, tremors and electrical shock pains down my legs have gotten worse, now daily. He agreed I needed a muscle relaxer, I showed him I already had one, plus the Baclofen he put me on last year.

Told him bout my autonomic problems which would relate to the PONS lesion. He tells me to go back to the cardiologist that did the tilt table test, but since I am already on a beta blocker for it, why bother? He said thats what they would give me anyway.

I want to know WHY I get these awful episodes where I suddenly am weak, cannot remain alert, my BP/HR shoots up then drops and I look unconscious, but Can HEAR! ALL part of the autonomic problems.

Since I am changing jobs, and probably will not be able to see him again, I am giving UP all these docs. I didn't want a MS diagnosis (tho he originally treated this as MS), today he said its not MS.

Ok, so now I think WELLNESS. Save money from all the meds, the MRI's and other expensive tests. I'll Treat my symptoms with a new PCP. But the spasticity, and locked up ankles has gotten bad enough that walking and exercising is very difficult. My muscles lock up all the way up to my back until it takes my breath away!! He encouraged me to stretch, exercise and do yogo. He and I agree too many meds is not good.

So...Bye bye... will be in limboland forever.... :cool:

Jan

Not so fast there, missy, we had you first and we're keepin' ya'! This is NeuroTalk, you can talk about all things neuro here! Besides, you'd miss us too much!

You must be so frustrated, it's horrible not knowing from one day to the next, but please do find a new neuro, this one sounds like he's coasting to retire. As another person who has those wicked back spazzes, I can empathize with the pain and unforgiving rigidity. It's overwhelming at times.

I sure hope you'll find some answers some how, some way. :)

Jan, have you had a second opinion at all through this process?

Cherie

i agree that another opinion is a good idea.
maybe it's a blessing in disguise that you're switching jobs.

I immediately thought 2nd opinion also. It's never too late. I'd advise staying on the Baclofen and muscle relaxers, you need it, for sx relief, whatever the dx.

Keep pushing on. Vent as necessary. That's why we are here. This change of jobs, might just be the door opening you need in your search for answers.

Sending :hug:'s

I believe I'd go get my records from the first Neuro and take them to a 2nd opinion appointment with a Neuro that specializes in MS treatment.

The first Neuro sounds like a real gem....NOT!!

Jan-
Silly, silly lady. You can't leave. You've been assimilated.

Something's up. Thinking wellness is great - the mind has terrific powers to either heal or deny ;) but please know that no matter what, you can always be here. You belong.:):hug:

Well thanks again for your support and encouragement. I wasn't really planning to leave, just didnt know where I belonged. I guess that is what bothers me the most.

I am great at giving others encouragement, but dont know quite how to deal with receiving.. another lesson I guess.

If my insurance changes with a new job, I may consider seeing another MS neuro, but just need someone to treat my spasticity. And once and awhile if my cognitive problems get bad, I may need a prednisone treatment.

Thanks again. I am just curious as to what others think esp about the spasticity and newest lesion on the PONS since I have autonomic problems.

Stay hopeful...

Jan

Hmmmm. I think you have MS. But I'm not a neuro, so I don't count.

I hope you get some answers soon:hug: Some great insurance from the new company and a visit to an MS specialist are definitely on order for you. Hope it comes through!

:rolleyes:I swear I already wrote again a few moments ago..but its not here...cue the science fiction music...

But now I am concentrating on changing jobs and with that a new neuro/PCP etc.

I am on vacation visiting a spot my DH and I used to frequent. Since he's deceased now, I find it comforting to be here. He even carved "jan loves frank, 2002" on a special place for me. Only he never could remember it after doing it due to his brain traumand short term memory loss.

I am trying to let go of so much stress...and trying to walk short distances. I know exercise is good.

Yes have the Rx Methocarbam for a muscle relaxer that does not make you too drowsy. ANd I prefer ibruprofin for pain now.

Thanks again for your support and encouragement.

I guess you can have GOOD neuro exams :rolleyes:
( no reflex problems or apparent weakness) and still have symptoms. Still learning as I go.

Jan