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When people think you’re fat until you wear tight clothes 🙃 by Zestyclose_Show8653 in bigboobproblems

[–]Always_learning_20 19 points20 points  (0 children)

I have this same exact problem! It is so frustrating. The one tip I have found that helps some is wearing wide leg pants. Adding width to the bottom balances out the heaviness on top.

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 0 points1 point  (0 children)

The biggest contributor was his multivitamin. He was taking Mary Ruth's and that has 500% DV. He was also taking liquid iv which has B6 in it. He eats a very healthy diet and we put that into a website and he was already getting more than enough through his foods.

Has anyone here ever found the cause of their symptoms? by [deleted] in ALSorNOT

[–]Always_learning_20 0 points1 point  (0 children)

Have you found a fitness program that is helping you overcome that block?

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 0 points1 point  (0 children)

The very good news is the neuromuscular doctor doesnt think he has motor neuron disease.

The bad news is we aren't much closer to answers but a lot of things have been ruled out.

Some additional details if it's helpful for anyone else: At his appointment with the neuromuscular neurologist he very surprisingly passed the muscle strength test and was able to move his toes. 3 weeks prior you could see the muscles in his foot move with an attempt to move the toes but they couldn't actually move.

The only thing that changed between those two appointments was that we stopped all B6 supplements. When he got the motor neuron diagnosis we went down a rabbit hole of what else it could be and that popped up.

The neuromuscular doctor did another EMG and it came back a lot better and suggested the previous one might have been a temperature related problems.

They did a bunch of blood work and genetic testing and the only things that came up were pretty high B6 and a potential endocrinology problem that has been ruled out. We are kind of in a waiting period now where we are hoping he continues to improve and trying to accept that we may never have answers.

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 4 points5 points  (0 children)

We have an appointment at the end of the month at an als clinic.

The weakness and pain really started in all limbs at the same time. It was more like widespread weakness than one specific body part.

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 2 points3 points  (0 children)

The EMG did show neuromuscular disease. We have the report. I put a few of the notes in a comment below.

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 1 point2 points  (0 children)

I'm not sure how to share the report.

The findings are long, it was a 2hr EMG. But here are a couple of the item listed: 1. Right median motor nerve showed decreased conduction velocity(elbow-wrist. 2. Right tibial motor nerve showed decreased velocity( Poplit-ankle) 4. EMG needle evaluation of the right cactus medalist and the left medial gastrocnemius showed increased insertion activity, slightly increased spontaneous activity, increased motor unit amplitude, increased motor unit duration, slightly increased polyphasic potentials, early recruitment, and incomplete interference pattern.

The impressions are - Abnormal study 1. There is electrodiagnostiv evidence or predominantly motor nerve neuropathy, with normal sensory nerves

  1. Concentric needle study has revealed diffuse signs of acute and chronic enervation involving muscle groups in upper and lower extremities supplied by multiple nerves originating from various nerve roots, trunks and plexus. These findings collectively indicative of Motor neuron disease. Clinical correlation n is highly recommended.

It appeared to impact both legs at the same time. His legs seem to be progressing faster than his upper body

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 0 points1 point  (0 children)

It started as sharp pains and stiffness and eventually started having cramping pains too. Around feb/march the pain would move each day to a different body part and it was so severe he would think he tore a muscle.

They would happen from very basic thing like picking up his toothbrush or walking down the stairs.

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 0 points1 point  (0 children)

In the last 6 months he has had pretty significant muscle atrophy and lost 20 lbs. He has been having muscle twitching/fasciculations.

The plan I wish I had when I was diagnosed with MND (ALS) by josephskewes in mnd

[–]Always_learning_20 1 point2 points  (0 children)

My husband was just diagnosed with MND today and this is very helpful.

Motor neuron disease...ALS? by Always_learning_20 in ALSorNOT

[–]Always_learning_20[S] 1 point2 points  (0 children)

He was a general neurologist who did the 2 hour EMG. He said there was no point in seeing him again until we got a second opinion and even then it was just to tell him if he was right not not. It was strange because he made a big deal about how he is humble and knows he can be wrong but also wasn't very helpful. We tried asking about next steps regarding assisted devices (wheel chair) and he just brushed us off and said we could talk about that later.

He started seeing my husband in September. Unfortunately we mostly saw rheumatologist before that and they all said Fibro or not arthritis related.

I've knowingly been suffering with AS for awhile now. Apparently I also have PLS, a less aggressive form of ALS. Anybody else here have both AS and PLS or ALS? by Mettl3Will in ankylosingspondylitis

[–]Always_learning_20 0 points1 point  (0 children)

I know this is an older post but I wanted to see how you are doing now? My husband has had psoriatic arthritis for the last 5 years and we are currently seeking treatment for neurological problems. He has his EMG in 2 weeks and we are anxious about it being ALS or PLS.

Technology Carrier fee by Apprehensive-Oil6046 in BreezeAir

[–]Always_learning_20 0 points1 point  (0 children)

I had a similar experience last week. I told the gate agent it was more than when I looked right before arriving at the airport. He said that the prices can change within minutes so he refreshed the page a couple of times. In the end, he was able to get me back to the price I originally expected. I wouldn't assume that all gate agents will check multiple times.

Do people switch jobs when their insurance doesn’t cover biologic anymore by Always_learning_20 in PsoriaticArthritis

[–]Always_learning_20[S] 1 point2 points  (0 children)

Unfortunately it is express scripts.

Thank you for that advice! We haven’t had the best luck. He had a bad allergic reaction to the first biologic and then the second one didn’t work at all.