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

Jan, you sound so sad that I just want to hug you and make it all better, but I also wanted to say that I agree with the others on two things.

1: You ain't going no-where!

Your our's now, and we don't give "our's" up that easily. You're part of our little community and you belong here with us ...... and ......

2: You need to get a second opinion!

Jan,


Please don't go....

You have given so many others kind words and encouragement now it's our time to give it in return.

I don't have a dx yet... but i feel this is the place to be since only we know what it's like to have sx with no dx.

Please stay...

Hugs
Cindy

Jan,
 

Jan,

You have always been so supportive of us, and had great suggestions.

I know that you're frustrated. But don't give in to it...be positive in thinking that there's an answer...you just haven't found the messenger yet.

I hope you're keeping a journal of sxs...

Most of all, try your best to live for the moment. I know it's difficult when you don't feel well and you're concerned about what's going on inside. But try to live a high-quality life to the best of your ability.:hug:

Hi Jan~ Yeah, the ole MS Merry-Go-round chews and spits out quite a bit. Sounds like you need to take a breather while at your vacation spot and then think about another opinion. You are a valuable and trusted member here and even if you don't currently have a firm DX, you are always helping others.

Take care and keep us posted, OK???

Yes I see this as another lesson. AND my plan this year was to eliminate as many docs/meds as possible. So far so good. heheheee

Both Rhuemies gone, the 2nd saying he doesnt need to see me as my problems are not in his field and suggested I might have an autonomic problem. Now gthe neuro ophlomologisgt gone as I am not on the med she had to check and my vision is STILL blurry at times even with new glasses...

OK so what if I do now if I have an "episode" ? I do what I have been doing. Take another Atenolol 25 mg when I feel the symptoms come one and I dont end up in the ER unable to communicate or move my body yet can hear. I just feel that is all related to the lesions on the PONS... but what do I know.

The MS doc said he'd still like to follow me... yeah.. out the door LOL

So with my job changing hopefully soon, and new insurance I may get a 2nd opinion.

I FEEL BETTER already. The getaway weekend was fabulous..just too dang short. Because I will be changing jobs I wont be having time off for months.

BUT THANK YOU ALL for your understanding that only YOU comprehend so well.

Back at ya... may random acts of kindness find each and everyone... and soon ok?

Warmly and gratefully,

Jan

I am so sorry that you continue to struggle. Being sick and not having answers really sucks! I for many years was told I had a "migraine" syndrome. it turns out it was MS. I didnt chase the dx as I didnt know any better. (some nurse I am) MS never crossed my mind as what I had.

If I could go back, I would QUADRUPLE my life insuracne. I would bump up ALL my benefits packages. I would make sure I got all those bits of paper in a row, BEFORE getting my dx of MS. It just so happens that the moment you get that dx you cant get insurance. They locked my current policies, and i was not able to buy more. Once I left my job, i lost a big policy.

I hope you are able to find some answers soon. Just having an answer eases your mind so much. good luck.

Your attitude is very inspiring Jan~

Glad you had a nice wkend. Good luck w/the new job. Your new employer is lucky to have you!