Tuesday, January 3, 2012

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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Pricilla said...

Perhaps your asshole neurologist has sleep apnea. He certainly has listening apnea....

I hope it works for you. I really do. Doctors can be such idiots.

Marie said...

Pricilla - You never fail to give me new reasons to love you. lol Thank you for such solidarity and for excellent asshole recognition. xoxo

Webster said...

Fire your neurologist and get another. I know they all can be arrogant, but his behavior goes beyond belief.

I hope the treatment works so you can wear pretty shoes for the wedding. I'm rooting for YOU.

Martha said...

Wow, that doctor is a disgrace to the profession. It's horrible when you know what is long, but they don't hear you. It's enough to want to relive the terrible twos and scrream I told you so over and over again.

Marie said...

Webster - Finding a new neurologist is at the top of my list. It is easier said than done, as I'm sure you know. He is my third one and the remaining ones in this area do not come highly recommended. But I am looking!

Thanks for your sweet words of encouragement!!

Martha - He was so dismissive, except for the You Are Going To Die part. I think he almost wishes I would now to prove him right. lol

I was too stunned to throw a fit at the time, although I had a good tantrum when I got home. I'm in the terrible Fifty Seven's. lol

Thanks so much to all of you for your comments!

Cranky said...

What Webster said. I was utterly appalled when I read the conversation you had with him. Looking forward to photos of the shoes you get to wear to the wedding!

Marie said...

Cranky - Thanks so much for your vote of confidence! It is always good to hear from you. I hope all is well in your neck of the woods. :)

Debbie said...

i think shoes are a tad over rated ;) i have not worn them in years due to ms. with that said, i do see pretty shoes in your future ;)

shaking my head in disbelief at the rest....i wish i could reccommend a neuro for you. katz has dissapointed me more then once. he is not the super star i once thought him to be!!

Marie said...

Debbie - I was JUST about to send you a message! You have been on my mind and I was going to send you a virtual hug. :) Thinking of your mom too.

I am not usually too picky about my shoes but I AM the mother of the bride. As this is New Jersey, in the winter, I think no shoes would look a bit odd.

I abbreviated the doctor convo. There were actually even more threats of death if I didn't go for a sleep study and subsequently use a C-pap machine! I keep telling him I DON'T SNORE!!! But he ignores me. It is so hard finding a good neuro. He has been ok, but this was the last straw. Why do we have to work so hard to get decent, respectful care?!?!?!

Anji said...

I hope that you get into those shoes. i think that some doctors think they are the hand of God - in the worse way

Debbie said...

thanks for the hug marie....i have been with my mom every single day since my dad had the heart attack on 11/30. we are both still alive, now that's a miracle ;)

Marie said...

Anji - Hi! Hope your holidays were wonderful! They do get that God complex, don't they? I hate to doctor bash, because there are some decent ones out there, but I have found most of them are arrogant and condescending. Very disheartening when you have a chronic illness. :( But thanks for the good wishes about the shoes!

Debbie - if it gets to be too much for you, I would be happy to keep her company for a few days. I have this leg wrapping thing every weekday for the next three weeks (OMG!!), but other than that I have nothing going on. I love your mom. :) And you too. I would be so pleased to help out in any way.

LymphedemaGirl said...

It's crazy your neorologist insisted it was sleep apnea... Impressive that you diagnosed yourself. Many, many Lymphedema patients are never diagnosed, some suffer a lifetime without treatment. Others, like you, are misdiagnosed. Doctors around the world are so ignorant of this condition. I have had Primary Lymphedema since the age of 3 or 4 when my left hand suddenly started swelling. No doctors knew what it was, only at the age of 36 when my right leg started swelling was I diagnosed with Lymphedema...Yes, wrapping sucks, but you will learn to deal with it and it does work. Will you be getting a compression stocking? I strongly recommend that, I could not function without mine, the fluid builds up in no time without it. Whatever happens, don't give up! You will learn how to manage this! I hope you get to wear the shoes for the wedding :-)
Kind regards,

Marie said...

Hi Liz! Thank you so much for your comment.

I am so sorry you have lymphedema as well. You are already ahead of me in hanging in there with the wrapping. I hit a wall on Friday and couldn't continue with it, the pain was simply too much for me. And I had four babies with no medication, including two at home, so I can usually handle pain. But this was relentless and increasing and I couldn't face another six weeks.

I am getting compression sleeves for each leg, though. Hopefully that will be enough to manage it. It is very hard not to get discouraged. But I appreciate your encouragement and I will be following your blog. I am sorry for the reason, but it is nice to meet you. :)