Update: Back on the scene.

[morningdew]

Hello, everyone. It's over a year now since I joined. I have continued to follow all your posts with interest and concern. I haven't posted myself, because my emg in June appeared to clear me of ALS. I have been sent to nine specialists(in different areas) in an attempt to find out what was wrong with me. I'm probably healthier in general as a result, but my muscle problems haven't been explained. The six month follow up with my neurologist led to a nuclear bone scan which showed severe osteoarthritis in most of my joints. He decided it was pain from that that was the problem and sent my to a rheumatologist. On my second visit to the rheumatologist last week, he told me he thought I may have motor neurone disease, and is contacting the neurologist again, but suggesting I get a second opinion. One symptom that particularly drew his attention was very hyper reflexes. especially in my arms . He showed me how they jumped about in different places when he used his hammer. My legs are pretty bad now (and I know it's muscles, not joints!), and I continue to have fasciculations and severe cramps, though siflor (used for Parkinson's) has helped the cramps somewhat. I'm having difficulty swallowing and have lost weight. But my legs are the problem. I'm becoming very disabled but find it hard to explain to doctors just what they feel like. They just don't want to work, and I have to keep resting them.
So maybe I'm going to belong on the forum after all. Time will tell. Love, Joan

 

[TedH5]

You will definitely want to get another EMG done. I hope you do not have ALS but if that is the unfortunate case just know we are here for support. I will definitely pray for a more positive outcome for you. Stay strong and keep the faith. Let us kno.w what the Dr's say.

 

[lydia]

Hi Morningdew,

I am really sorry to hear you haven't seen any improvement nor found out the cause of your worsening physical symptoms. It must feel as if you have come full circle with your rheumie's comments.

Lydia

 

[notme]

Might I suggest that this second EMG/NCV you have done be done by a specialist in MND? My old adage is :They call medicine a practice for a reason.

I'm totally unconvinced that every doctor out there is a good one. Find a specialist. I sure wish I could find one to see here in Orlando

 

[morningdew]

Thank you all for your replies. My long silence is due to the fact that I went on a Sun Princess cruise, Sydney to Fremantle. Unfortunately, half way round the top of Australia I was taken ill with a pulmonary embolism. No deep vein thrombosis, no explanation.
When I'm feeling rather better I will see another neurologist. The ship's doctor also commented on my brisk reflexes. Three out of four, he said, and pointed out that upper neurone signs didn't affect an emg. Joan

 

[notme]

Hi Hon

Sorry bout the PE--been there, done that. Not fun. I assume you're on the blood thinners? One of the things that is common for causing them is atrial fibrillation. Afib can be hard to diagnose--especially in those like me that don't have it ALL the time. They only found mine when I collapsed on a treadmill with a heart rate sky high. The drugs to control the afib didn't prevent clots.

It's possible that you had a small clot in your leg that moved to your lungs--even if they didn't see it on the ultrasound in your leg at the time.

As for the other--have they tested for MG? (Myesthenia gravis) It can cause the weak muscles that better with rest, from my understanding. I'm assuming they've already done the brain MRi, spinal mri, etc, done to rule out MS--which can cause UMN type of signs in people.

The one that causes only UMN signs is PLS--have you asked if it's a possible consideration? It's even more rare than ALS--and takes quite a while to diagnose, apparently.

Is there a motor nuron and neuromuscular specialist you can see where you live?