Latest MRI shows nothing too, now DH needs a muscle biopsy...

[Dancemom03]

DH has been having increasing weakness in his legs over the past 6-8 yrs without an actual diagnosis. He'll fall without warning and, after a fall/ER visit in July, they discovered it's now affecting his arms too. We're so frustrated. He's had MRIs & CTs of his brain, spine, neck, legs, you name it. They've tested blood for everything imaginable. Despite treating other issues they've discovered over the years, nobody's been able to traet/diagnose the cause of this progressive weakness.

Enter two new neurologist from seperate practices - one specializing in muscular brain & spine issues - followed by more MRIs - the most recent of his neck. Still nothing major enough found to explain his symptoms.

So... the next step is a leg muscle biopsy. Unfortunately we found out too late to schedule or call the office today and DH didn't ask any questions. The muscle lady (LOL that's what the first new neurologist called the second brain/spine center specialist she referred us to) has her own people to do the actual study once it's out but it's that removal process we're wondering about now.

If I research it on the net, it'll only make me more concerned with things that probably aren't applicable. Thought I'd turn to a few hundred of my closest friends instead and try to pick your brains. Does anyone know what a muscle biopsy entails? Is it usually hosptal outpatient or in an office? If they're going thru to the muscle and cutting out an inch, I'm guessing they'll use anesthesia but what type? Will he be able to work later that day? Anything we should know beforehand? TIA

 

[HonnyDipp]

I was diagnosed with a muscle disease called Polymyositis back in 2006. Slowly I started getting weaker in my arms and legs. My family doctor's couldnt explain it. After 6 months of going to the doctor with no answers, I went from chasing my 3 kids to using a cane! I was 28 years old! I lost the ability to climb stairs, stand up from a chair, even walk. I went to a Rheumtologist July 2006, he immediately put me in the hospital and ran several tests. I was diagnosed with Polymyositis the next morning. Basicallly, my immune system attacked my muscles and forced them to break down. I dont know how I got sick, and there's no cure. In 2007, I was told that I would never walk again. I was taking massive amounts of steriods and RA medications. Now, almost 4 years later, with a combination of very good drugs and physical therapy I'm walking again! Very slowly, but I'm getting around. As a matter of fact, on Saturday, I say goodbye to the hospital bed I've been sleeping in for the past 3 1/2 years! I'm still taking ALOT of meds, but I'm in remission and I'm loving it!

If you want to chat, send me a PM. Ask me anything! Also, Facebook has a great community.

The next time your hubby goes to the doctor for blood work, ask the doctor what his CPK levels are. The normal numbers are in the 200 range. Mine at the beginning of my illness was 16k! I get blood work drawn every 3 months. Those numbers tell me how my body is reacting to the disease.

 

[HonnyDipp]

As far as the muscle biospy goes. He will be very sore for a few days afterwards, you will have to treat the area and keep it clean. Its not a comfortable experience, but they will do everything they can to ease the pain for him. Has he had an EMG (nerve conduction graph)?

 

[Nette]

I was diagnosed with Guillian Barre after a flu shot in 2004. My symptoms started with tingling and muscle weakness in my legs and moved on to my arms. It took a good 3-4 months before they diagnosed me.

Has your DH had a lumbar puncture? They might want to check that if he's not showing significant atrophy as I would assume one would have if their muscles were actually breaking down.

What about a nerve conduction study? Are they sure it's muscular and not neurological?

Best of luck to you.

 

[Dancemom03]

As far as the muscle biospy goes. He will be very sore for a few days afterwards, you will have to treat the area and keep it clean. Its not a comfortable experience, but they will do everything they can to ease the pain for him. Has he had an EMG (nerve conduction graph)?

They did the EMG on New Years Eve morning when another patient cancelled at the last minute. That confirmed a real problem... ironically not news to us but somehow reassuring anyway. She mentioned Polymyositis as a possibility but didn't give any details. She said his CPK levels were high but not as high as many Polymyositis sufferers, then theorized that perhaps that's because he's been taking a daily regimen of Prednisone for the last twenty years for Chrohns and the steroids could be helping keep the levels lower.

DH can't do steps, walk inclines, has pain, trouble getting up from chairs or if he bends down. At wdw last summer we rented him an ecv from an offsite company so he'd have it 24/7 but he stayed in the room or with DD9 at the pool more this trip with only a few forrays into the parks. He doesn't complain and works everyday but I can see it's starting to get harder for him...

 

[HonnyDipp]

wow, he has alot of my symptoms! I havent been upstairs in my own home for almost 4 years! My DS had an asthma attack a few years back, and I hit those steps but I couldnt get to the top of them. My legs just gave out. There were times where I would be standing and just collapse. I even landed on my foot breaking it. Kinda of reminded me of a rag doll, the legs just completely give out. Since he's already on the prednisone, that would explain why his numbers are not extremily high, but his CPK should be normal, the fact that they are elivated should cause them to look into Polymyositis. They started me on 80mg of prednisone a day for 6 months, then they tappered me down. I've been off of it for almost a year now. My weight is CRAZY but hey, I'm in remission. You do what you gotta do ya know? Keep me posted!

 

[Dancemom03]

I hit those steps but I couldnt get to the top of them. My legs just gave out. There were times where I would be standing and just collapse. I even landed on my foot breaking it. Kinda of reminded me of a rag doll, the legs just completely give out.

That's how he ended up in the ER last summer. Legs gave out just like that standing after he got out of shower and he thought he broke a rib. While they were doing the exam/xrays the doctor there noticed he couldn't lift his arms above his shoulders and the weakness was affecting his arms now too.

I remember he even used that "rag doll" description once to a doctor. He has a hard time getting up the four steps from the foyer door to the landing and can't carry a grocery bag or anything up the steps. Even the ramp at his work is getting to be really difficult.

Has your DH had a lumbar puncture? They might want to check that if he's not showing significant atrophy as I would assume one would have if their muscles were actually breaking down.

What about a nerve conduction study? Are they sure it's muscular and not neurological?

Originally the first new neurologist wanted a spinal tap (?) but then the bloodwork came back and the focus shifted. The nerve study was just done, then an MRI of his neck, and next they say he needs the muscle biopsy which they say will show which muscle disease is the problem. Each time they suggest another test we get anxious, and then hopeful, that they might finally diagnose whatever this is before it progresses to the point where he can't walk.

 

[HonnyDipp]

oh yeah, you name it, I've had to basically learn to do all over again. There was a time when I couldnt get up from a seat that was at least 40" high. Now, I'm getting up from a standard chair! I WALKED into a restaurant a few months ago. Sat down at the table and ate with my family. No wheelchair needed. After I fell and broke my foot, July 2007, I was in the hospital for 2 weeks because my numbers were off the charts again, then they moved me over to in-patient rehab. I was there for 2 more weeks. About 2 months later, my doctor had pulled me down from the steriods too soon, and I fainted! I was placed back in the hospital for another two weeks, then the doctor wanted me to do another round of rehab. That was when I was told I would never walk again. Christmas 2007 I stood up and took 4 steps. After that day, you couldnt tell me nothing! I was determined to prove those doctors wrong! Pool therapy and yoga has been a blessing. The pool is warm, and it allows the body to be free. Since my disease is so rare, my theripist is learning along with me. I've been with her for about 2 years now. I was going through a divorce before I got sick, so my kids and I have been living with my folks. My mom retired from her job after 37 years to take care of me, she's amazing. In May, my dad was diagnosed with throat cancer. So her attention has been focused on him. Now that my papa is cancer free, we are determined to make this year perfect! Its been a struggle but I've gotten through! The hard part was getting diagnosed. Everyone's story is different, but I've noticed that is the one thing that alot of us have in common.

 

[KPeveler]

They will use local anesthesia usually for it. He probly should not plan on working later in the day. When I was scheduled for one, it was going to be hospital outpatient...