Asking for crossed fingers

[rendean]

Hi All,

I saw my neuro for an out of rotation (usually every 3 months) visit as a work in after I called earlier in the week to complain that despite adding Flexeril to my mix of meds that my muscle cramping continues as well as a one sided headache whenever i lie on my right side.

Since I have been on Tysabri for almost 2 years, he ordered an MRI to check for PML-tomorrow. Since it's on Saturday, I get to wait on pins and needles for an answer for at least 3 days. Unfortunately,patience isn't really one of my best virtues.

Any good thoughts would be appreciated!

Thank you!
Ren

[candy158]

Sorry I am a bit behind on this thread, but I'm so sorry Ren, to hear about your mom...... it is hard when we lose a parent, that is for sure...... I have lost my father too.... just about 4 months ago or so.   So, I know how you feel on that one.

On the other front, I'm still keeping digits crossed that your neuro will figure this out quickly......

I'm so glad that your neuro gave you good news.  I agree with guitar_grrrl about choice words for the neuro.  I think we all could come up with a few winners on that front.

Hope you enjoy your long weekend, and take care my friend....

Hugs and lots of positive thoughts and wishes,
Candy
(((((())))))))

[Guitar_grrrl]

Yaaayyyy, Ren!!  I'm so glad you got good news!  I have some choice words for that neuro, though....

[anon07072023]

Glad you don't have PML and your mom is doing OK.  :-)

[Sierra28]

Good news, Ren!

I'm starting to think that neuros have some of the biggest egos out there. Really. Would it hurt that bad to exert themselves on our behalf sometime? Geesh.

Glad to hear your mom is doing well. Thank you for the update!

[SarahL2491]

Yeah!!!!

[rendean]

Finally, my neuro called today with yesteray's MRI results. I had already assumed that it wasn't PML because I didn't get a call urgently yesterday.

My MRI looks "basically unchanged" since the last one I had done at this particular facility. This is not where I was getting my routine MRIs but that neuro, at my infusion center, is having issues with me not usinig him as my primary neuro and stopped ordering them there. So my primary did order it but they wouldn't do my scan due to my implantable recorder and the infusion neuro neuro refused to back me. Still with me?

Hmmm, imagine that! Me not trusting him as my primary neuro after he wouldn't diagnose and treat me originally...can't think of any reason why I would have doubts...anybody else?? Just because he has the best infusion center doesn't mean he's the best neuro for me.

Anyway, my neuro is going to investigate some other possibilities and have the radiologist look at a couple of other areas to explain my issues. I see him again in 2 weeks.

THANK YOU to everyone who crossed digits and other body parts for me! My Mom is holding her own right now. Am waiting for today's update from my sibling.

Ren

[Lulu54]

Well, Ren.... how did it go today?  We've had our collective fingers crossed for several days waiting for your test results..........

[SarahL2491]

First, let me say that I was JC+ tested before I started Tysabri and I am on it also.  Every DMD drug carries a risk, every drug carries a risk.

Steroid use has to be CHRONIC for any link to PML is relevant.

All of our neuro's consider PML when needed, its better that they do, than ignore it.  Many are now doing regular Spinal Taps to test for PML which as I understand it, is now the best and earliest way to find it.

4am?  go back and finish your nap LOL





I also think we should support Ren and not scare her.  She is well aware of the risk, as all of us Tysabri users are.  

[kwarendorf]

Hi Ren -

I'm in the same Tysabri/PML boat, almost. I've had 20 infusions, and 5 months ago my JCV blood test came back positive. My CSF, at the same time, came back clean so we continued.

Tomorrow I have an MRI followed by an appointment with my neuro. Assuming the MRI is clean, we will discuss the merits and risks of either staying on Tysabri or switching to Tecfidera.

Even with my JCV + blood test, I am not all that worried about PML. There are other prerequisites that I don;t have; like prior immunosuppresant therapy and more than 24 Tysabri infusions.

This article lays out the numbers in pretty straight language.

http://www.medpagetoday.com/clinical-context/MultipleSclerosis/32743

All that said, I'm crossing my fingers for you :-)

Kyle

[anon07072023]

I can understand not wanting to say good-bye to your mom.  :-(
I'll definitely send good thoughts her way and hope that she will be OK.

HUGS,
Kelly

[Sierra28]

Thinking of you, Ren, and your mom. Praying for peace for you through this and through whatever tomorrow holds!

Sierra

[rendean]

Thanks to everyone for their positive thoughts and encouragments for my MRI tomorrow.

Right now my thoughts have changed gears and are concentrating on my 90 year old Mom who was hospitalized again today due to her heart.

Any positive thoughts , if any kind, you could send her way would be SO apprecited!!! I am so not ready to say good-bye to her!!!!!!!!!!!!!!!!!

Thankyou,
Ren

[anon07072023]

Good luck  - I'll keep you in my thoughts. I hope they figure it all out for you soon.

Hugs,
Kelly

[cubbiesfan918]

Best wishes! Will keep you in my thoughts~

[candy158]

i agree with Alex... Hang in there.  We have to become our own dr.s and go in with a list of want and expectations and don`t leave until they are all answered to YOUR satisfaction.  That is what I do .  Even with my new surgery I had, I pushed for antibiotics for 5 days  and going home with the foley catheter in.  Especially since I was and am still self cathing...... so, had I not asked for that, they would have yarded out the cath on day 3, and sent me home.  

So, you see, know what you need, and don`t let the Dr`s sway you .... trust your gut..!!

((HUGS))
Candy

[HVAC]

Hang in there

Alex

[LisaJF]

I always want (but never had) to ask the doctors this question:

If it was YOU, I assume if you knew something was wrong with your own body and your doctor(s) tell you nothing is wrong, what would you do?  Us medical professionals tend to pull out the "I know a lot more than the average Joe" card to prove a point of our concerns.

No doctor likes to admit their wrong, although I did have one surgeon who adamantly expressed his no concern over my son's (15 year old at the time) lymph node in groin.  I got, "Oh its viral or bacterial, lets wait a month and recheck it.  Fast forward in two weeks, the lymph node was causing my son pain and when I palpated it, it definitely grew.  I made a new appointment before the "one month" mark and said, "Take the lymph node out and prove to me its viral or bacterial, we'll live with the scar."  He then went on about 1 in 10,000 would even get lymphoma.  

Surgery was scheduled a few days later, he came out and said to me, "It's cat scratch fever I'm sure of it, although I couldn't get all of it out".  Three days later, I was told he had non Hodgkins Lymphoma. He then apologized profusely and told me he will forever listen to parents when they tell him something.  True story.

See when you know something is not right with you or your child, then pursue it.  

After all, it is not the doctors health that is at stake, it is yours and yours alone.

We'll see if one of my doctors or all will be in the weenie roast soon enough.  :D

Lisa

[rendean]

To clarify my JC status, as of 6 months ago it  was negative. As were my anti-Tysabri antibodies. I am due for a re-check of these in July or August, I forget  but either way the doc at the infusion center is being a pain and "won't treat me" since I use another neuro for  my primary MS neuro.

This neuro at the infusion center is one who refused to diagnose and treat me when I started asking intelligent, well-informed questions. He was all set to start me on Copaxone then I asked since the dx of Sjorgen's syndrome was still valid why not do a treatment to  help both.

Seemed a simple enough question to me but it offended him and his answer was , "I don't think we will start treating you today". That's when I moved on to my present neuro who ruled out Sjorgen's and started treatment.

What a pain in the neck docs can be when we have enought to worry ourselves about without their arrogance!! When is the next neuro weenie roast? We are LONG overdue for one!

Ren

[LisaJF]

I must say Ren, techs can be pretty amazing.  Mine was.

Sorry about the trip all the way out there, but you know what, to err on the side of caution is a good thing in your case.

Plus you got free parking and free food coupons! Better be good food! LOL!

You are always in my thoughts! You know this!

Lisa

[rendean]

To All,
You have been AMAZING in your support and I  SO appreciate that!!!!

Please hold those thoughts until Monday since after an hour and an half drive and chanigng into scrubs ,etc. , the radiologist called Medtronic the maker of my internal loop recorder, and panicked and removed his offer to scan me on a weekend so it is rescheduled for Monday at 10:30 am. So that a cardiologist is available to reset my recorder.

The tech I dealt with was my advocate and tried his best to get the radiologist to do it but he would not due to CYA reasons, which I understand.  I am using the same tech on Monday and he validated the expensive parking and offered free food coupons for my troubles and then asked if he could give me a hug. He was AMAZING!

So please hold your thoughts and prayers and crossed digits until Monday and know that I SO appreciate your sentiments. They mean  a lot to me!!

Hugs to you all!!
Ren

[candy158]

Oh my dear friend, you for sure are on my prayer list.  Everything I can cross comfortably and some not SO comfy, we are praying that you will ace this one too.

I do hope though, that you can find out about the headache though, they are nasty, that is for sure.

Keep us posted about your results in the next week, and gently hugging my friend (((((HUGGING)))))) and a big thank you for all you do on this forum, and the difference you have made in my life.

love ya,
Candy

[Guitar_grrrl]

Fingers, toes, teeth (?!?), and anything else that can be crossed!  Sorry, I can't remember your JC status, either.  I'm hoping all goes well for you!

Big Hugs!

[Lulu54]

Ren, I'm sure it will go well for you.  I hope the Tysabri continues to be a good choice for you.  I know it has done the trick for me.  I'm curious about the one-sided headache only when you lay down and look forward to hearing more about this after you get your results,.  ~Laura

[Cann1980]

Thinking of you!