Neuro Visit: Perplexed/Reality Check/Disappointment

[rendean]

I had my 3 month re-check with my neuro. Took my list of new aches, symptoms and complaints. Same old stuff. Brief neuro exam. Looked over PT assessment noting loss of strength after I discussed it with him. Discussed meds and potential blood dyscrsia, etc.  Discussed new hand tremors and muscle twitches and contractions.

Neuro says I "definitely have something physiologically going on , but it's not MS" in reference to my hand symptoms. He said since it only lasted 2 days and involved both hands, it was not MS induced.

Part of the symptom was the inability to write and remember how to write my own name, like cog fog on steroids. He claims that this not MS. If it's metabolic, why didn't he ordered a metabolic panel?

He said my neuro exam remains unchanged and my MRI in April showed no change so I am not in a relapse. My strength went from right-50lb and left -40 lb to right-40lb  and left 30 lb of pressure in a month's time as noted by PT and my complaints.

He told me this is the way my disease is presenting. We discussed that my relapsing remitting is not remitting back to my old norm. This is of course, disappointing. I actually wanted this to be a relapse so I had the hope that I could regain some of my old abilities.

He also said it is not SPMS or he would be trying a more aggressive therapy (current-Copaxone). He said he is not opposed at all to steroids but feels that they would be of no help.

Does MS just cause a sudden loss of strength? For those of you who have random muscle twitches and contractions do they follow a pattern and how do they present, are they all the time, daily, weekly , random?

I went to the website "we move" and I could not decide exactly what movements my body was making. I didn't think to videotape it until after the fact.

Any thoughts or experiences anyone would like to share regarding this?

Thanks in advance,
Ren

[Sarahsmom46]

I read your post this morning just before leaving for work and it has been on my mind pretty much the whole day.  

I don't know what to say about your neuro visit and what the doctor told you.   If he is thinking that things are progressing then he should be straight forward about it so there is no reading between the lines.  Then again, who knows what he is thinking exactly unless you ask him directly.  

Who else could you consult about these new symptoms?  Is there any change in your medications? I know you probably already thought about that, but it was still worth asking.  

Could it be stress?  I only mention this because I have developed a twitch of my upper eyelid over the past couple of days and I am chalking it up to being stress related.  Too much is going on around me lately.

I hope you find some answers or at the least that this new symptoms goes away on its own.  Fingers crossed.  

Hugs,

Julie

[PastorDan]

Truthfully, I'm as skeptical of your PCP as I am of the neuro.  Seems like the function of a PCP is partly to determine where to send you for specialized investigations.

[essdipity]

I'm feeling more than a little dense in the brain at the moment, so I can't think of much that might be helpful.

But I really don't like your doctor's tone. In your area there are bound to be lots of MS neuros, so perhaps a consult would be a good idea. Or various consults. Then if you find one you can deal with, and who doesn't tell you what's not MS without telling you what it really is, then hope aboard that ship and ditch the other one.

Sending hugs from ess

[RedFlame]

Hi Ren,  

Your neuro is sending you double messages that contradict each other.  To me, it sounds like he isn't sure how to treat you and he just doesn't know what to do.  What is strange to me is that he isn't referring you to a different neurologist or even having more tests done.  If he really thought metabolic he would be referring you for that too.

I haven't 'forgotten' how to sign my name but can't get my muscles to work right.  For the most part my signature looks more like a doctor sig.  

I have twitches everyday now.  It used to be only my legs, now it is starting my arms and lower torso.  Like you and Tonya I have had a steady downhill descent for a year now, continuing to worsen, increase symptoms and worsening of old ones.  I haven't had a day off in over a year.  But I am not diagnosed yet.

In your case, I wonder if he is really thinking PPMS?  I have heard they don't treat that.  

Would talking to his nurse be helpful?  Maybe getting some clarification"

(((Hugs)))

Red

[Sailorsong]

Wow,

   You are the first person I have heard mention the thing about forgetting how to write their own name like I have had happen to me. This first happened to me back in 1989 and my signature has become just scribbles in recent years.

  I also get random symptoms as Tonya had mentioned. My current relapse has been ongoing for over 6 months with a constantly changing list of symptoms. For example with my right foot drop I can experience this every day for several days then it will go away, but come back again several days later.  I can tell when I am having foot drop very easily because I wear slippers around my house all of the time. When I am having the foot drop the slipper on my right foot will keep slipping off of my foot when I walk around.

Dennis

[PastorDan]

Could it be that he expects you to go to an endocrinologist for metabolic issues?  Surely he'd understand that someone with the cog issues we've faced might need a little guidance in determining what specialists to see, right?  Oh, who do I think I'm kidding?

Sounds as if he's trying to play both sides of the fence, saying it's the way your disease is presenting, but in the same appointment asserting that the new symptoms aren't MS-induced.  Seems to me that it either is or isn't, or it can't be determined if it is or isn't, but to say that it's one and not the other, while simulatneously being the other and not the one, is more than a bit self-contradictory.  I doubt that observation helps much.

[rendean]

Tonya,

Thanks for the response, I do plan on making sure he is sent a copy of CMP and if the results are normal then he needs another /better answer. Shopping IS one of my favorite past times................

Hope your week is a good one,

Ren

[tonyad]

  Hey there :)

   Sorry to hear of your disappointing Neuro visit. I actually do have the muscle twitches and contractions....Mine do not follow any sort of Pattern. They are quite fun to watch (sp), as it looks as if an Alien is under my skin..Lol

   i agree w/ you that you should get a Metabolic Panel done and then take the results BACK to him!  If it shows NOTHING...Well then...He needs to do a bit more explaining!

   I also know what you mean when you said that your Neuro said "This could be just the way your MS is presenting!"  Ummm, Ok..!  However the weird thing for me is that I had to have "Permission" from my Neuro faxed to one of my docs in order to get my fillers (Juvederm) and a tiny bit of Botox  ;).....Anyhow, when the fax came over....it said the usual begining so and so and then he wrote I am seeing or treating or overseeing (something like that)  Mrs.*******(me)  for SPMS.   So, I do not know if he DID in fact change my dx or just wrote it down wrong????  I will find out at my next appt though!

    Again, sorry I can not help more but, I, like you, NEVER get better, have a day of nothing, get new sx, along w/ worsening of the old ones, and COGNITION???..Well, If I were to get a Letter grade on that...a definite "F"   So, we are in the same boat.  

    I think / hope that after you get your metabollic Panel completed he may have a change of thought...You never know  :)  Don't give up as I know you will not.

Big Hugs to you and have a safe and Great week,
~Tonya

[rendean]

I do like my neuro, otherwise I would be neuro shopping right now. I just don't understand him dismissing the symptoms, especially since I made it clear how much it upset me.

My PCP is not a rocket scientist so he would probably be of little help, he's just convenient and easy to deal with.

Maybe neuro shopping is what I should do, after I ask my PCP for some blood work.

Thanks Lu!

Ren

[Lulu54]

Ren,
I don't even know what to say here  except to ask if you like your neuro?  It sounds to me like the doc is just going through the motions with you.  If its not MS, the neuro should be coming up with scenarios that do fit, and not just dismissing them.

hugs,
L