It's a Wrap

The hideous swelling in my legs has finally been diagnosed as lymphedema – a failure of the lymph system to do its job properly. We are protected from infection by the constant movement of lymph fluid throughout our body. But when trauma or some sort of damage interferes with the process, the result is pooling of the fluid below where the impairment is. I have spinal cord damage and am increasingly immobile from MS, so my legs are the victims.

I was lucky to find a lymphedema treatment center close to my home. While doing the medical history, the physical therapist said “Ok, so which of your doctors diagnosed the lymphedema?”

Pause here for ironic laughter.

Because I am the one who diagnosed it. My PCP, whom I really do love, kept treating me with diuretics as if it were regular fluid. Can’t tell you how much fun that was, running to the bathroom every ten minutes. And that is sarcasm because of course I cannot run, I can barely stagger three feet. He was solicitous but could not give me a reason for the swelling.

My neurologist, who I used to like, the one who is supposedly an expert on MS, claimed the swelling was due to my sleep apnea. The only problem is, I don’t have sleep apnea. Although he, a man who I swear never slept with me, is convinced I do. Even though I have no symptoms and no one that I actually have slept in proximity to has ever told me that I do. But for some reason he is absolutely fixated on me going for a sleep study. Here is his subtle and gentle way of persuading me after I tearfully told him, from my wheelchair, that I am depressed, can no longer walk, have barely left the house in a year and I can’t wear shoes because my feet are so swollen:

Dr. H: You have swelling because you have sleep apnea and if you don’t go for a sleep study and treat it you are going to die.
Me: speechless with mouth hanging open
Dr. H: You need to treat your sleep apnea.
Me: But…
Dr. H: Or you’re going to die.
Me: But…
Dr. H: That’s what’s going to happen.
Me: But…
Dr. H: You’re going to die.
Me: But…

He has wanted me to go for a sleep study ever since I complained about being tired three years ago. Number one, fatigue is a primary symptom in MS. Number two, I am on a medication which has a black box warning that states it may cause you to fall asleep without warning during daily activities. Two excellent reasons for being tired. Not to mention not sleeping well because of pain in my broken shoulder. Another excellent reason for being tired. But he went straight to sleep apnea and sleep studies, dismissing the medication warning as ‘hardly ever happening’. I declined the sleep study for a myriad of reasons, mostly because I know I don’t snore, so I feel it would be a total waste of time and money.

We repeated the little scenario above several times, he gave my legs a perfunctory glance and agreed to my suggestion of actually addressing the swelling with some form of treatment. MY suggestion, not his. And I only came up with the treatment protocol and diagnosis by Googling ‘leg swelling and MS’. Lo and behold, up pops an entire clinical bulletin, sponsored by the MS Society, which outlines the connection of lymphedema to MS, describes the causes and the treatment. The treatment which, interestingly enough, does not include either diuretics or sleep studies. It is directly correlated to immobility for MS patients and, sure enough, it started as I became less and less able to walk. We are meant to be weight bearing beings and when we are sitting all the time things go wonky. Although in my case, because it is me, things go extra wonky.

So back to my PCP I went, the one who doesn’t threaten me with death. I showed him the clinical bulletin and he was totally respectful and supportive. I found a lymphedema center and set up the appointment. And I started treatment today.

A picture of my actual leg is too appalling to contemplate, so I'm treating you to this lovely drawing instead.

It is not fun. Called decongestive therapy, the key principal is compression bandaging. My left leg is now encased in thick, firm foam and wrapped tightly with elastic bandages. I have to have them re-applied daily, and wear them continuously, for four weeks. Bulky and heavy, it is incredibly uncomfortable and, because my legs are sensitive due to the MS, painful as well. But I am trying so hard to be positive, and grateful. The therapists could not be nicer and they are super enthusiastic about the outcome. I want to be on board, so I am working determinedly at being appreciative that there is a treatment available and focusing on imagining the results.

My goal: to be able to wear shoes to Elizabeth’s wedding in February.

Wish me luck!


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