Now what? Rheummie isn't convinced I need RX

[Tinker]

After waiting 4 mos to see my dr., the day finally came.....and went.  He cancelled and rescheduled me for today.  But, I was only scheduled to see the PA.  Now, I do love her, but, after being dx with SS and polymyositis, I did think I'd at least get to look at him.  I've forgotten what he looks like.

So, the PA wants me to have a second opinion with another neurologist (she doesn't think I look like a myositis patient...not sick enough and the muscle biopsy showed only mild inflammation.)  Which is good news, but it seems I am back to square one.

She did consult with the rheumatologist while I was there.  He reluctantly wrote a script for Plaquenil and ran more labs (sed rate, Jo-1, amylase, & CK.)

Back to the neuro.   I find out the neuro will see me Friday but they forgot to call and tell me.  Opps, no it's just the PA, can't see the neuro.  GESSHHHHH!

So, I am wondering what you all think?  I don't know if I'm comin' or goin'.  I had to pull out the lab work to show the PA I had an 8 on my SS-A (anything under 1 is normal.)  I think that's the ONLY reason the rheummie wrote the script for plaquenil. 

I'm just lost and frustrated. 

[eyeamdry]

Hi Tinker-
I know you're frustrated with all this!  I know about the PA thing too because I have to see a PA at my GP's office if I need to get in before 2 weeks!  I have to wait 3 hours at my Rheumy's office if I want to see her.  I can see the PA and get out in an hour or so.  As you said, geesh.  My rheumy is also an hour and half away and it's winter and we have tons of snow, the roads are bad and I have an appt Monday!

If you are feeling poorly, I'd sure start the Plaquenil.  My rheumy runs all those tests each time I see her also.  Good luck with the neuro on Friday......rather the neuro's PA.    Lucy

[Scottietottie]

Hi Tinker 

It's not unusual to get started off on Plaquenil. If it works, one can stay off the steroids for a while, which isn't a bad thing! As you'll have read - it can take a while to work though.

What were you hoping would be prescribed? Just curious.

Good luck with the neuro appointment.

Take care - Scottie 

[Tinker]

Hi Eye am Dry and Scottietottie,

Thanks for your replies. Scottietottie, I was really hoping he would validate me by just seeing me.  It's like I'm not important enough to EVER be seen by him.

And, he discounted the clinical exam and lab findings of the neuro.  IMO, the tests the neuro ran were the tests the rheummie should have run but didn't.  He just brushed me off as a fibromyalgia nut case.  The PA is wonderful and I love her....it's him that I have problems with.

Here's the thing.....he writes my prescriptions and until I find another Rheummie to do that, I'll have to keep him.

I see the neuro PA tomorrow and the course of action will be decided.  I am happy with the plaquenil script.  The problem was I had to push for it, wait for it for 4 mos., and beg for treatment for the SS.

I am very grateful to my sweet PA...she is great.  Whatever he is paying her, it isn't enough.

[Scottietottie]

Hi Tinker 

OK - I see what you mean. Thank goodness the PA is good. I suppose its quite a big decision to drop 'him' when you like the PA! Is the neuro PA as good? I hope so. Good luck with that appointment.

Take care - Scottie 

[kelene]

Tinker I can only tell you my experience... I was dx with Sjogrens and at the time was just starting to get weak... when they put me on the plaquenil It did help.. esp the fatigue and my skin rashes went away... my mild weakness at the time got alot better for a while.. as my dr says plaquenil is well tolerated and only a few  have eye issues... I felt so much better on it...
well that was quite a few yrs ago now.. but I still take it..

I have taken prednsione for my muscle weakness and it helped.. but was taken off it until I get an official dx...i had a normal bx a couple of yrs ago . when I was only really starting to get weak.. I am currently crawlingup the stairs at my home.. and I can't lift a thing... but I look good! I have an appointment with the head guy here in hamilton .. I have been seeing his colleague and my case has stumbed him... these guys are neuromuscular specialist,,, my sjogrens dr told me that muscles are not his thing and send me to them... I think seeing the neuro might be helpful

Have you had an emg.. I cant remember.. I think that is something the neurologist will do... hopefully that appointment goes well....

good luck

[Tinker]

Hey, everyone,

Kelene, the neuro PA appt went very well.  I was sooooooo tired I couldn't sit up.  Yesterday, I had a good day went to a ladie's lunch, and delivered my Avon and I was bushed. 

OOOOOHHHHH, did I pay for that!  Sooo tired.  So anyway, the PA was very helpful to explain and discuss the plan of action.

She also conducted a physical exam.  Learned something new:  she had me stick out my tongue and she noticed scalloping on the edges of the tongue which indicates muscle weakness.

I'm to try 10 mg of pred every other day with stomach meds, and return in 4 wks.  They'll conduct another muscle strength test, which I will probably fail , then they'll push for the IVIG.

I'm going to wait to start the pred until after xmas and a short trip we have planned. 

She also gave me samples of seroquil to sleep and skelaxin.  So far, the skelaxin has done nothing.

I know my problems are more myositis related but that site is a bit slow and, well, I just think you all are a friendlier bunch.   

[Scottietottie]

Hi Tinker 

I'm glad the neuro appointment went well. The neuro PA sounds as though she was quite thorough. I do hope you get onto a course of treatment that works for you. It's at least looking hopeful!

Take care - Scottie 

[Seeker]

G'day Tinker, I have been following your adventures.  Your on quite a Rollercoaster ride.  The main thing is don't give up.  As the old Seventies saying gos, Keep on Trucking.  It sounds like you are a strong personality and a fighter.  Don't let frustration win over you.  We all get that way sometimes.  Glad you are letting us know what you are going through.  By sharing your victories and your losses, you are helping others.  We are all stronger because we share our strength.  Have a wonderful Christmas you and your family.

Seeker

[Tinker]

Thanks everyrone.
Seeker,  yes , it's been a real roller-coaster ride!  You got me pegged...I'm a fighter but I do it in a very nice way!  ha

I'm glad anything I wrote might help anyone here.  I've gotten soooo much info from all of you that has helped guide me.  If I had sat back, I'd never have made that appt with the neuro and learned that yes, something else was terribly wrong.

And you guys told me about not delaying treatment as that could cause more damage.  I had to stay on that and I'm glad I did.

I just keep thinking about being stronger!  and actually having a life ahead of me.  Throwing a bunco party or something fun like I used to do!  Maybe that day is just ahead of me. 

Have a wonderful Christmas, Seeker, and thanks for your kind words.   Tinker

[Reenie]

Hi Tinker,

I am curious about the scalloping on the edges of the tongue.  I have had that for about two or three months.  I'm a bit embarrassed to bring it up to any of the docs.  I did mention it to the neuro and he said a lot of people have scalloping on the edges of their tongue (even though I told him it was new and I'd never had it before).  He also said a lot of people have a positive ANA and it doesn't mean anything.  You get the gist.....he pretty much dismissed anything I mentioned to him with that type of answer.  When I have experiences of dismissal like that, I tend to start withholding many of my signs or symptoms, because I hate how it makes me feel.  If I recall correctly, I cried in my car when I left the neuro office.

I did do some searching a few months ago about the scalloping, and the only thing I remember coming up with was "macroglossia", a fancy word for enlarged tongue.  Again, I was too embarrassed and traumatized by the neuro's words, that I have subconsciously ignored this new symptom and haven't brought it up again.  I did take some pictures of it.  That is my new thing, to take pictures of all the weird swellings, rashes, scalloping, etc., because maybe some day one doctor will be able to connect the dots with visuals as an aid.

Did the PA give more detail about the muscle weakness causing the scalloping?  Is it weakening of the tongue muscle itself?  I wonder about this, because I often accidentally bite my tongue while talking or eating, and then it bleeds.  I feel like I have to make a conscious effort in order for that not to occur.  The sound of the crunch makes me cringe just thinking about it.

Thanks,
Reenie

[kelene]

the whole tongue thing.. I have that and muscle weakness.... I know what it means in TCM eastern medicine...

My muscle drs have never ever asked to look at it... but I have sjogrens and my immunologist and a resident looked in my mouth and said that my tongue was swollen.. they acted like it was common.. I want to know about this too... interesting

[Tinker]

Reenie, no, the PA didn't elaborate on the scalloping of the tongue.  I've had it a long time and I never gave it a thought.  I googled it tonight and got the macroglossia tag.  I found a book online called "The Neurological Exam" and it showed pictures of abnormal tongues and identification of their problem.  I googled "scalloped tongue and muscle weakness" and this book came up.

Another thing that came up was that Hashimoto's thyroiditis was most assoc. with scalloped tongue.

I didn't get a chance to really research this but that's what I found out with a quick search.

kelene:  What does TCM stand for?  And what does this mean in Eastern Medicine? 

I think my tongue seems swollen and my voice is definately weak sounding...can't sing anymore.  Let me know if you find out anymore info on tongue scalloping.  The PA had another name for it but I didn't catch it.