had my biopsy

[wendya432]

Well, I had my muscle biopsy on Friday. So far, so good. It definitely hurts more than I thought it would, but I'm doing better today than I was yesterday. In a few days I'm sure I will be fine. Luckily I was sedated, like you would be for a colonoscopy or something like that. No stitches, just though steri strips with a big clear plastic thing stuck over it. I have to leave it on for 10 days, then take it off and it should be all healed! Not such a bad thing to go through if you have to. The worst part was Friday evening I had a bunch of myoclonic jerks and it was incredibly painful. I don't think my muscle liked being messed with. Lol

Results should be in by my appt with the neuro on the 8th, but if they aren't in by the 7th I need to reschedule my appt out another week or so. Anxious to go to this appt. I'm curious about the results of the biopsy, and neuro was going to discuss my case at his conference he went to. Maybe we will finally have it narrowed down.

So now I just have to try to wait patiently. I can't submerge my leg for 10 days and we are going to the lake for the 4th of July, so that stinks, but what can you do. I also missed my son's overnight zoo trip with scouts, no way I could've done it a day after the procedure. But he took grandma instead and was happy about that. I guess sometimes we just have to adjust our life around this disease. But luckily my kids are so easy going they don't mind. Heck, I don't think my youngest remembers me before I got sick.

Anyway, just wanted to update, cross your fingers it doesn't take forever for my results!

 

[MaxEidswick]

>Results should be in by my appt with the neuro on the 8th

If the neuro suggest mnd, you might want to ask for a referral to Amy Feldman at UM ...

 

[Suzannah]

Hi Wendy,

Thanks for the update. Where did they do the biopsy? Leg or arm? If leg, do you need crutches or can you get around ok?

And though I know you don't live alone, but hypothetically if you did, would you be ok to be by yourself?

Hope your results come back in a timely (and informative) fashion.

--Suzannah

 

[AKmom]

I had a muscle biopsy from the upper thigh done in 011. They put a couple stitches and strips and I was told just do what is comfortable. I was told I could shower and everything. So I did. To me, I have had much worse pain and surgeries that what that was. The stitches were removed in a week and the strips replaced. It was completely healed by week 3.

Mine showed muscle atrophy and listed quite a few reasons. The doc and I went through the list of reasons it could be and marked off everything that had been already looked into and ruled out. The only one left after that was neuro-muscular disease, which can include PLS. So if anything, it just proved even more that this is what it is.

Good luck on your results. I hope it helps you find some answers.

 

[wendya432]

Suzannah, No crutches. I had it on my right thigh. Since I had it on a Friday, I just didn't drive over the weekend. Mainly because it's my driving leg, you know? But other than that I would've been fine on my own. I was on my own with my 3 kids all weekend since my husband was out of town. No big deal.

My sister is a home care nurse and changed my dressing for me today. The end of the steri-strip was irritating my leg, and the gauze pad was looking kind of gross. So since that is basically what she does for a living she fixed me up. It's about an inch long incision and not all closed up yet.

I think it must just depend on who does it if they do stitches or not.

AKmom, thanks for the info! Hoping it won't take forever for results!

Max, I will remember that!

 

[Suzannah]

Hi Wendy,

Did your results come back in time? Are you going to be able to have your appointment tomorrow?

Thanks for the info. I think I may have to have one in a few weeks and wanted to make sure I'd be okay to come home alone to a second story condo.

Hope you get some answers soon!

 

[wendya432]

No results yet. Rescheduled for the 22nd.

 

[wendya432]

Well, I got an email that I had test results in. Just talks about the procedure and nothing in the findings. I guess that means I have to wait until my appointment to find out. I wonder why I didn't get the results.

 

[IhavePLS]

Call your doctor. Maybe this means the results are negative.

 

[wendya432]

I called Friday. My husband starts a new job next week and we realized our insurance would be over by the 22nd. New insurance doesn't start for 90 days. So they were able to get me in Monday morning. So tomorrow I will update after my appointment. Crossing my fingers for some answers!

 

[dalvin]

Wendy, don't forget you can keep your insurance under cobra, can be costly but better than not having it. You never know when an emergency will come up

 

[Suzannah]

Yay, I'm glad you will not have to wait so long to get your results.

Regarding COBRA, you can usually reinstate coverage retroactively within a certain time frame if you need it (in case something happens before your new coverage kicks in).

Good luck!

 

[Nikki J]

I think that cobra window is 60 days though which would leave them vulnerable for 30 days. Thinking of you this am as you get your results!

 

[wendya432]

Results were normal. Good that it isn't a muscle problem, but we kind of knew that already.

One of my labs in the paraneoplastic panel came back elevated, so I have to have CT to screen for cancer. That is going to be on Friday. If that is normal all we are left with is upper motor neuron disease, which of course is PLS.

 

[dalvin]

The length of time you can stay on cobra varies I believe. The policy rules on mine are 18 months which can be extended in the case of catastrophic illness. There is however a small window of time in which to enroll