Pain-free day!

Oh what a happy day! Jim had no pain (minimal numbness in his toes) and was able to go on a 30 (!) mile bike ride in our town. He said he felt very good and didn't feel any ill effects from the ride. It's the first full pain-free day in quite a long time. The Lyrica must be working and Jim is considering increasing his dose to get rid of the numbness as well. Whether it was the drug or something else, I'm grateful for a day with no pain.

Understanding what and why

Dear Medical Professionals,

Is it possible for you to explain what you're doing to your patients and why? I'm not looking for a lengthy, molecular-level description, I just want to know what this blood draw is for or what that balance test could mean. I get that you perform these procedures and processes multiple times each day, and that you only have a few minutes to spend with each patient before you must rush to the next one, but it sure would help to understand the reasons behind your actions.

Thanks.

The Emotional Tidal Wave

Feeling sad today, for no particular reason. Well, obviously there's a reason, but there wasn't one thing that set me off. We went to the hospital for the spinal tap and seeing Jim in his gown while we waited an hour and a half for the procedure to begin just made it more real. Of course, it's always real for Jim that he has some condition that causes intense pain, but I get to forget about the reality of it more.

They wheeled him away and maybe because he wasn't there anymore for me to talk nervously to and try to distract both of us, I could feel tears welling up. I was able to not break down, but I knew it would happen later.

The spinal tap itself ended up being no big deal. Jim said they numbed his back (he was on his stomach, which allowed him to fully relax his muscles) and he didn't even realize they had started collecting the fluid when they told him one vial was already full. The whole thing lasted about 10 minutes.

Afterward, he was to lie flat on his back for about an hour, which he did. I got lunch from the cafeteria for both of us and brought it back to Jim's room (not actually a room, just a three-sided space with a curtain on the fourth side. We could hear other patients along the hallway in the other spaces and they did not sound good). We ate, waited, and then went home, where Jim is almost finished with his 8-hours-lying-flat discharge directive.

I decided that releasing this latest stress, anxiety and sadness was probably for the best, so I just let myself break down at home and got it all out. Well, maybe not all, but some. It felt good to be self-indulgent and I did feel a sense of relief afterward. I talked to Jim about it and he's down too. We're in this together and I'm glad we can be honest with each other about what we're feeling. Sounds like a  self-help book! But it's actually helpful!

Now, on to the waiting game until we have the results.

Spinal Tapping

Tomorrow Jim will have his first spinal tap to analyze the fluid for certain proteins that are markers for MS (and maybe other things?). He's nervous, but knows that it could lead the doctor to a diagnosis. He's also taking Lyrica (just started last week), which seems to be helping with the pain although it's a little early to tell. Lyrica comes with a host of potential side effects, so we're staying watchful for those, specifically depression (this just keeps getting better!).

And in other news, Jim's mom's health seems to be declining, perhaps due to early Alzheimer's. Her memory is very bad and based on a friend's description, she sounds quite confused. So poor Jim is dealing with his own pain and medical mystery while his mom is deteriorating. We'll go visit her on the East Coast in a month to see how she's doing.

One thing at a time: fingers crossed that the procedure goes well tomorrow.

MRIs and a Perkins giftcard

Five months ago, my husband Jim complained of numbness in his big right toe. No big deal. Then it spread to his right foot, then the left. Next was tingling in his hands which became pain in his legs, arms, face, torso and generally everywhere. He went to his GP who referred Jim to a neurologist, explaining he was worried that it might be MS.

"WHAT?!"

I received this information via text, which is THE WORST way to receive bad news (okay, there are plenty of other terrible ways, but this was bad). I had so many questions, the main one being 'Is he a freaking idiot?' I mean, of course he didn't have MS. Obviously he didn't have MS! There's NO WAY he had MS! How could that be even in the realm of possibility?!

Then that voice in my head asked, "Why not?"

I mean, people with MS don't have someone sit them down early in their lives and tell them, "One day, you're going to have Multiple Sclerosis." Instead, it sounds like they have troubling symptoms, go through a bunch of tests and get the diagnosis, sometimes after years of pain and other symptoms.

So why not my husband? He doesn't have it in his family, but many people with the disease don't have a hereditary connection. Women get it more frequently than men, but men get it. And he lives in the right latitude to have it. And that's basically all that's known about how/why people get it!

"WHAT?!"

So after I calmed down a little bit to accept this possibility, I did what every person knows they shouldn't do when faced with an illness/disease/lump/funny-looking mole, but we do it anyway: I Googled Multiple Sclerosis.

Death and destruction! Doom and gloom! We're all going to die!

The Internet is terrible. No, that's not what I mean. The Internet has so much terrible information mixed in with good information, and it's hard to tell the difference. How does one know what source to trust? Forums with regular people (i.e not medical professionals) discussing symptoms, causes and treatments seem to be the worst, with most contributors making wild (and I'm thinking potentially dangerous) guesses about diagnoses and cures. I like websites that are made by companies or organizations that have demonstrable knowledge and experience behind them, like the Mayo Clinic and, now, the National MS Society.

The latter has tons of great resources about how to handle an MS diagnosis. Things like: be intentional about who you tell, be prepared for all kinds of responses ("My aunt has that too!" "I just read about a green tea cure for MS!" "... (awkward silence)" or "I'm so sorry." Note: this last one is the best one.), go to all your doctor appointments, etc. This is all very well and good, but we didn't have a diagnosis yet.

So Jim's neurologist ordered three MRIs (!): one brain plus and upper and lower spine. For a guy who really doesn't (and I mean really doesn't) like small spaces, he powered through those three way-too-long scans like a champ. Should an MRI take 1 hour and 45 minutes? No, and I know that because the techs kept apologizing for how long it was taking. But Jim persevered. His MRI was so long that he got a Perkins gift card because he had to wait. Our hospital gives out Perkins gift cards for long MRI waits. I think it's meant to be thoughtful, but it just strikes me as strange. "Got a potentially life-shortening disease for which you need an MRI that took too long? Go to Perkins on us!"

The neurologist and a radiologist reviewed the scans: nothing.

The doctor also ordered a full blood panel to look at things like vitamin levels, white blood cell counts and indicators for all kinds of diseases.

Also showed nothing.

Fast-forward to today after a couple more check-ins to see the neurologist where Jim complained of continued and more intense plain and either got drugs that didn't work or other drugs that knocked him out (opioids), and we're basically in the same place. He had another MRI today of his lumbar area, which showed disk degeneration, which was expected due to a long-ago injury that Jim sustained. Next up: a spinal tap to look for proteins that are a pretty definitive sign of MS.

Onward on the road to discovering what this is, or not.