Compression boots

[Kikigirl]

Hello all in this beautiful community!! I’m so blessed reading some of your stories. I’m a 55 yr old female recently diagnosed motor neuron disease. They are highly suspicious of ALS. Frankly, so am I. I began to suspect in aug 24. So I’ve been partially processing. I begin a variety of testing next week.

The last couple days have been excruciating for all four limbs. Mostly both legs. I’m using muscle relaxers, pain meds and cannabis. They’re not working much the last couple days, due to bad spasms, contractures and legs twisting inward.

I’m trying to think of ways to alleviate. I had the idea of using compression boots. Has anyone ever tried that for this?

Thank you for reading. Love and grace to all!

Kiki

 

[Nikki J]

Hi Kiki sorry you find yourself here. To better understand which mnd do you currently have as a diagnosis? Is it a working dx of pls? It sounds as if your issue you are asking about is bad spasticity?

 

[Kikigirl]

Hi Nikki, thanks for your response! I’m just learning all the terminology, please forgive

Yes, maybe that is what the term spasticity means. I wasn’t sure about that. My doctor did say that.

Before I lost all the muscle in my right hand, the first symptom was inability to pick things up with my fingers. My dexterity was going. Currently, my right hand is nearly useless, the right arm is pretty weak. I’ve done one strength test for my hands, maybe arms to, and legs. There is lots of muscle loss on the right side. They have not given any diagnosis on which type of motor neuron disease. But with all of the symptoms, my doctor is highly suspicious of ALS. My first appointment with the neurologist is in a week. So we’ll see what she says. Whatever I have is limb onset. All of this began last June. Bi September my hand was nearly useless. I constantly have fasciculations in my legs, but never thought much of it since it’s not painful. Pain is a pretty powerful motivator! Lol.

I’ve lived in Puerto Rico the last 10 years. Healthcare is somewhere between first world and Third World quality. They kept giving me prednisone. I went to Florida last August and they started looking for MS but ruled that out. February 1 of this year I moved to Colorado Springs. So I’m pretty much just beginning the process of elimination or finding what’s going on. But they did diagnose it as a definite motor on disease.

About three weeks ago, my lower lip started tingling. It kind of felt like I went to the dentist and the numbing was starting to wear off. But it was only the lower lip. By the third day of that, I started feeling a few tangles on my tongue as well as a small patch down my throat. It was pretty weird. And only lasted about 30 seconds. I’ve never experienced the tongue tingling again. Only the one time. My voice is very hoarse. I often have bowel movements while I’m sleeping. I fall a lot so now I have to use a cane or walker.

That’s where I’m at at the present. I don’t feel terrified or freaked out or anything like that. I am starting to feel a little overwhelmed.

With the issue of spasticity in both legs, what are your thoughts on trying compression boots? I’ve had calf spasticity for a few months now on the right leg. But it’s moved into my upper leg, the inner thigh, the back of the the leg, etc. But now it started on the left leg as well.

Thanks again,
Kiki

 

[lgelb]

Did anyone mention multiple system atrophy?

How much a given walking aid helps relates some to the process that causes the spasticity. I would ask the neurologist this question as well.

At any rate, "suspicious" is not "diagnosed," and you say you haven't seen a Colorado neurologist yet, so there is certainly room for doubt. Are you being seen at an academic neuromuscular clinic?

 

[KimT]

Did they give you Baclofen? That's usually the first drug they give for spasticity. Some have had success with magnesium cream/oil and oral magnesium. I massage my legs every night with magnesium cream. Some find heat helps with painful muscles and certainly massage is worth a try.

As Laurie says, an academic neuromuscular clinic is best. General neurologists aren't specialists in MND so they usually examine and refer. That is what happened in my case. My general neurologist saw some signs clinically and he didn't bother with an EMG or further testing, just sent me to Mayo Clinic. I went to Johns Hopkins for a second opinion.

I hope you don't have to wait too long because getting symptom relief is key.

 

[krnNdug]

Be very careful with Baclofen if you have dogs. We almost lost our daughter's because of one pill I accidentally left on the floor. The ER saved her.

I have 2 different types of compression boots. I have a painful SCI, Adhesive Arachnoiditis, the compression boots help with the pain. My doctor said that it will also help not get DVT which I got from one vacation. One of battery powered which a can wear in the van or on a flight. The other has to be plugged in for it to work. But is gets tighter which feels awesome for me.

This is not a medical endorsement, but a personal one for comfort and pain relief.

Sorry that you are here, but the people here are awesome. Nikki is my hero. It will be interesting what your neurologist says.