Undiagnosed

[Kim123]

Thank you for listening. Started with severe low back pain last fall. That has subsided some now. Progression of symptoms continues with at first left leg pains in mostly back of leg with muscle spasm in left lateral lower leg. Left leg became very tight and hard to move. Right leg now becoming the same. Both legs weak. Alot of leg pain constantly in both legs. muscle spasms in both leg quads and lower legs and feet. Arms achy and feel weak.. Every joint snaps and hurts. All blood tests ok. No osteoporosis. Neuromuscular doctor ordered emg of left arm and leg. Said it was ok but lumbar nerve was sensitive. Neuro exam weeks ago ok. Early als? How accurate are emg's in the beginning in just 2 limbs.

 

[affected]

What are your doctors suggesting is the next avenue to explore with you?
You Neuromuscular doctor has cleared you of ALS it seems, and nothing you report would make us suspect ALS. The EMG is accurate very early and in just 2 limbs.
I hope they find the cause soon so you can get back to full health.

 

[lgelb]

A two-limb EMG should be very much on point, especially with all the issues you describe. In ALS, there is widespread motor neuron damage that extends well beyond areas of clinical weakness (though you do not report any).

As you know, however, pain, aches and feelings of weakness are not the hallmarks of ALS, least of all symptoms in "every joint." I would be looking to rule out systemic and rheumatologic disease.

Best,
Laurie

 

[Kim123]

All rheumatoid , inflammatory, and autoimmune extensive blood work all negative. Going this morning to a orthopedic doctor due to constant left leg pain and calf spams. Not sure what to do next. This is why als is still on my mind. Thank you for any input. I am truly struggling. Still maybe emg's results was too early to tell anything and I know it is a clinical diagnosis. Thank you.

 

[Bestfriends14]

Honestly, ALS really shouldn't be on your radar. Your symptoms simply do not align with the onset of ALS, so I'm not sure why you're leaning towards thinking you have it. As mentioned, ALS is not a joint disease or muscle disease, it is a neurological disease that manifests itself in sequential muscle failure one part of the body at a time. If your joints "snap and hurt", you need to follow up with your doctor, not an ALS forum.

Best of luck to you and please stay safe, get rest (but don't just lay around, make sure to get gentle exercise), and stay hydrated.

Take good care

 

[Kim123]

Sorry to question again but input would be greatly appreciated. Muscle pain ,spasms and twitching in both legs more frequently. In same muscles always. Left leg very painful and stiff . I've lost around 10 pounds no swallowing probs but always clearing my throat. Saw ortho dr Fri. Did reflexes said very hyperactive in knees and elbows.Hyperreflexes he said. I messaged my neuromuscular dr today he called back so to discuss emg report. I thought it was ok but it's not. Chronic motor axon loss noted in gluteus down left leg Consistent with intraspinal canal lesion L5S1 roots or segments. Mild report said. Without being accomplanied by evidence of active or on going fiber loss. Emg was before so much more pain numbness tingling.and spasms and twitches. All orth ,rheumatic ,autoimmune,and inflammatory blood levels x-ray scans negative. Should I let this go and see what developes next or get 2nd opinion. Tired of doctor appts. Feel so miserable. Was emg done too soon. Not that emg's are 100 percent. Hyperreflexia is alarming. Any response appreciated of what to do next. Thank you

 

[Nikki J]

You have never mentioned having an mri. Surely you have? What were the results of the lumbar mri?

 

[lgelb]

As Nikki said, an MRI would be important in light of an EMG that says something is wrong with your spine. The good news -- that "something" is not described as motor neuron disease, a totally different thing.

 

[Kim123]

Mri of spine scheduled for end of the month. Had just x-rays of back earlier. I just grab all of these symptoms and my mind explodes . Never felt any of these before. Hypereflexies worries me still. Forgot to mention orthopedic Dr said I had positive Hoffman sign of both middle fingers. Possible spine problem.? ALS prob less likely since like you said emg shows no motor neuron active disease ? You are wonderful people thank you so much for letting me ramble my concerns. My aunt had ALS and I loved her dearly.

 

[Kim123]

Clinical diagnosis of als as of yesterday. All else has been ruled out. Need help. Please.

 

[Nikki J]

This was made by a neuromuscular doctor based on a repeat emg? If not a neuromuscular doctor should be your urgent first stop. If it was still get a second opinion and also get genetic testing asap since your aunt had it

 

[Kim123]

Yes was a second neuromuscular doctor. Mri of spine negative for lumbar or cervical stenosis etc which emg pointed to.not als they said. This neuromuscular dr said positive Hoffman's sign 100 percent both index fingers. Hypereflexies. Clinical exam spasticity etc etc. I have another appt with different neuromuscular doctor this Monday . This doctor appt I had made couple of months ago hard to get into him. So this will be the 3 rd. I will insist on another emg. Any suggestions of what to ask him when it comes to the emg. Really don't want to go thru it again. Seems like the first one was a waste. I know I'm leaving some info out but my mind is mush. Thanks for listening

 

[Nikki J]

Do the emg. You will need a diagnostic one to try for clinical trials and as I said get genetic testing asap. There are some gene targeted trials coming for c9 and there will be a small one for one dose sod1 plus tofersen for sod1 will have compassionate use this fall

 

[ShiftKicker]

Kim, here are a couple places to look. It's all very overwhelming to begin with, but these links may provide a jumping off point:

If you've just been diagnosed

Second Opinions

And for when you have a bit more time and concentration, there's collection of resources:
Resources

 

[Bestfriends14]

Hi Kim,

Definitely insist on another EMG as Nikki said and get genetic testing. I've found FALS has a sometimes odd presentation more so than than SALS. I'm sorry you're going through this. Take some time for yourself and family, and try to remember to breathe. When you get your EMG, please post results with identifying info removed.