Swelling/Edema..muscle related?

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Sammy D

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I really need to talk about my situation with people who understand. 8 years ago I developed severe fatigue and muscle spasms. I ended up seeing a neuro because docs found UMN abnormalities. My EMG was abnormal. They did everything to help me, brain and full spine MRI, Spinal Tap, Toxin panel..the only thing they diagnosed was, spasticity, clonus, mild brain atrophy and frontotemporal lobe lesion. My neurologist then fought for me to have a genetic test for spastic paraplegia. Still no answers. I went on with my life as best as I could and now its time to go back. Lots of muscle spasms with atrophy and stiffness. My left side of face and tongue as well. My question is about Edema....I am on blood pressure medicine and my BP is great. (Two hours into the day my feet, ankles and legs swell up..I can barely wear shoes. Sometimes only my right foot/ankle swelling and thats the one that has visible atrophy. If I try to do really hard things like paint walls my hands swell up. I have never heard of anyone with ALS having swelling early on.) My doc said its not my heart. He is sending me back to specialists at UNC.

Just wanted to say that even though I am on the radar for ALS my docs are working hard to find something else. So I didn't think it was appropriate to enter this question anywhere else. I am really in need of advice/experience with this issue. I pray I don't have this disease so I am happy to be posting here and not in another category. Thanks
 

Nikki J

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I am sorry you have been in undiagnosed limbo for so long. I hope you get answers soon

whatever is causing your atrophy is most likely why you have the edema because you have lost a lot of the ability to return the fluid to your core. It might be ALS but it could well be something else. If it is ALS it is very very slow in progression While you are waiting look into compression stockings.

are you going to a major medical center? I hope so!

do keep us posted on what happens
 

Sammy D

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Thank you for responding. I am fortunate enough to go to UNC neurology... it just seems like everything decided to go full force after I started ceiling renovations. It was really physical. I have so many things but right now I am worried because my ankle is hard to walk on with atrophy near the outside tendon, serious spasticity/spasm at night, swelling, and my shoulder started burning and I couldn't carry my big purse around....I had to switch to a small one. I get alot of joint and back pain..so I am hoping my new MRI will show a herniated disk with basic old arthritis. Its been hard not knowing but the longer I went without new issues the more it pointed away from ALS.....I have an appointment the first week of March...I know the ride I am about to go on...tests etc if the back MRI is normal.
 

Sammy D

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My hands are much worse but my back is killing me and shoulders...the swelling in my legs is insane, one pic is in the morning and the other 2/3rds into my day. I can walk, and do most things, albeit with a lot of rest afterwards. My appointment isn't until the fourth and I just need to talk about this. I cough at night a lot because of windpipe irritation, that and my tongue symptoms scare the sh-- out of me. The other things I can deal with much better. I have been on radar for this disease so long that I thought for sure it couldn't be. I have never read anything about having a lot of pain or swelling in the feet and legs like this. I know the pics are super personal but..I can only point these things out on here. I don't want my family to worry needlessly. So its best not to mention it.

Ps. The one back pic is next to a normal back, normal to me anyways.
 

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Sammy D

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I know that I have had bulbar symptoms for awhile....my dentist actually noticed it before my doc. (This has NOT been confirmed by my Neurologist, I will see them on March 4th) My smile has been funky for awhile, I cough at night because of a throat tickle, and recently I am having a hard time saying certain words in conversations. Mostly ones that have a Sh sound. If I stop and say Sh words I'm okay but in mid sentences I have difficulty. Has anyone experienced that?
 

Sammy D

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I have posts in could this be ALS. I went to the neuro today and they put me on Carbidopa/Levodopa for dystonia. I am going back soon for an MRI. I have to let them know if the med help me. I really hope it does and that the muscle loss in other places is just secondary to something else. Has anyone on here taken that med and it help with muscle spasm and stiffness?
 

ShiftKicker

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Hi Sammy-

I've moved your post to your already open thread to keep things all together. Because you have not been diagnosed with Motor Neuron Disease (ALS, PLS, PMA) we request you keep to the "Could This Be..?" subforum.

Carbidopa/Levidopa is a Parkinson's med and is also used for Dopa Responsive Dystonia. It's not normally used for MND, so your question may not be something the people here, who have ALS, can answer for. Is there a thought you might have dopa responsive dystonia? The benefits, were it to be DRD or Parkinson's, can be anywhere from immediate to a few weeks before a therapeutic dose is reached. My hope is that you do feel some relief with this med.
 

Sammy D

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Yes! I have to go back for my MRI and EMG because of localized muscle atrophy. The medicine is supposed to help with the severe spasm and contractions I have. I have had so much pain and it is helping. I am so blessed, I may go on to find things but RIGHT now I am being helped and so appreciative. I do want to stay on my account but I was wondering if my posts with pics could be deleted....I went too far with those, and I am sorry. Thanks so much.
 

Sammy D

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Has anyone had to do bloodwork for multiple myeloma?
 
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