You guys probably get this all the time...

[dalvin]

hey, no problem. that's why we're all here, to get and give help.

 

[venerable]

Just been back and reviewed my original post. What a difference a couple of months makes. No longer any numbness in legs, just fascs constant. Clear loss of muscle mass. Arms and hands starting to feel like how legs felt at the beginning - alternating crampy and burning pain, loss of control, feeling of muscles forgetting what to do, breathing not great. Still hoping its BFS, hoping I'm being an unconscious hypochondriac even though I'm generally not the anxious or hyperbolic type.

How big a deal is the inability to walk on heels by the way?

 

[venerable]

Well, got my bloods back, all normal apart from CK of 250. Does this seem high ?

 

[ANDMON]

Purpose of the test

To measure concentration of creatine kinase in blood.

Reference range values

Male 52 – 386 U/L

Female 38 – 252 U/L


Abnormal findings

The following are possible diseases related with abnormal Creatine Kinase tests results:
• Heat stroke
• Legionnaire's disease
• Muscle disorder caused by HIV
• Muscle tissue death
• Muscular dystrophy
• Neuroleptic malignant syndrome
• Reye's syndrome
• Rhabdomyolysis
• SARS - Severe acute respiratory syndrome
• Statin-induced myopathy

 

[vickim]

I had all sorts of blood tests numerous times and they found nothing out of the ordinary. All you can do is keep searching. Have they asked about a muscle bio? It is so frustrating and takes so long to find answers, I know but hang in there. They will get it figured out.

 

[venerable]

Hey vickim, I have EMG/NCS booked early in the new year so will mention bio then I think.

Thanks ANDMON, although I'm aware of ranges, purpose etc, was mainly looking for values from those who hae had CK tested themselves so I can compare notes. Apologies, I should have specified this in my post.

 

[vickim]

The only blood test that showed anything was a rocky mountain spotted fever test which was positive. Go figure, at some point in my life I guess I had it. My ck level was normal. Only the muscle bio did it for me. I had abnormal emg/nvc which showed neuropathy in the feet. DId you get your cane?

 

[venerable]

Nope, no cane as yet. No good ones for sale over here!

 

[venerable]

EMG/NCS in a week's time. MRI a few days ago, awaiting results.

In meantime, bloods have thrown up Polyclonal Gammopathy; my liver's fine though, full blood count shows no reaction to infection, been through the list and I don't have lots of what's on there for obvious reasons (I'm not female, am HIV negative, obviously do not have TB or leprosy and have never been to the tropics, to name just a few) which kind of leaves neurological stuff or neoplastic causes, from what I can make out. Question is, did anyone else here with a diag of ALS/PLS ever have Polyclonal Gammopathy show up in the blood? Or did anyone at all have it and if so what was your eventual diag? Thanks in advance.

Bizarrely, seem to have lost the ability to curl most of my toes on my left foot. No pain, no stiffness, they just won't curl. Anyone ever come across this before?

 

[monster]

My blood showed a polyclonal gammopthy in 2011. Nobody knows why. I've not been diagnosed with ALS.
Good luck to you.

 

[venerable]

Thanks monster. Hope everything works out with you too.

Any others have polyclonal or the toe thing?

 

[venerable]

That was the NCS/EMG today then.

NCS seemed normal.

EMG on both legs at rest was sporadic popping noises with constant thudding sound underlying it, like a slightly fast heartbeat. On movement, turned into hail on a roof which took a few seconds to stop upon returning to rest. Upper body was constant hail on a roof that intensified with movement but was always there. Neuro wouldn't comment on EMG.

This ring any bells or sound similar to anyone else's? Have a wait until new year for results and follow up with lead neuro. Cheers.

 

[Nikki J]

Sounds similar to mine from what you say. Mine was normal. I don't have ALS symptoms and the EMGs I have had were done for research because I have the family genetic defect. Hope you get the report soon

 

[venerable]

Cheers Nikki. I'm having symptoms and have ALS/MND in the family so, well, we'll see. Cheers for the response.

Anyone else have any bells ringing?

 

[Nikki J]

Venerable, remember it is not FALS until at least 2 people in family are diagnosed. Hang on to that. I pray this is anything else for you!