What the Hell is Wrong With My Body?

 

What the hell is wrong with my body? Something I am sure many of you have thought to yourselves at some point. Only this time, for me, I am actually not talking about my MS. Something else is wrong, I can feel it. We all know our own bodies, we know what is normal and we know what is not. We know when something is wrong, we just know. I know something is not right with my body; I can’t explain how I know it I just do [know it]. At the beginning of this year I lost somewhere between 20 and 30 pounds (roughly 10-15 kg) in about 1-2 months! Now I have always had a really fast metabolism so I could drop or put on almost 10 pounds in that same amount of time but never have I lost so much so fast, especially while I was trying to put weight on!

Around this same time, I was called into my neurologist’s office because my white blood count (WBC) was really low so he wanted to do an overall checkup. I guess everything seemed ok because nothing really came of that. We stopped my Aubagio, as he thought maybe that was causing my WBC to drop, and decided I should start Zinbryta (a once a month injection). My WBC did end up going back up but thanks to all that super-fun clerical red tape in the world of healthcare I have still not got my Zinbryta. But that does not matter, you see, a few weeks ago I had gotten another call from my neurologist’s office that my WBC was back down again but it was “nothing to worry about” because it was “not that low”…

Low enough to warrant a call…

Well, I actually have no idea how low it was or where it even is now as I still can’t seem to get my labs from LabCorp (not for 7 months) thanks to, once again, clerical red tape. But what I do know is that I have not been able to get my weight back under control. I eventually started eating 4 meals a day and eating snacks in between while keeping a food diary (always shooting for 2,000 calories and usually going over). Now I don’t know how much you know about calorie intake, maybe I don’t even know that much myself, but at 2,000 a day I should at least be maintaining my weight. It’s not like I am super active and constantly burning off more calories than I take in you know? But even still, after a week of this I weighed myself again (same time of the day, after I had gone to the restroom since water weighs a lot) but wow… I had lost another 5 pounds.

What the hell is wrong with my body???

The first thing I had thought was that something was wrong with my thyroid. Lemtrada can cause you to develop thyroid issues so maybe my thyroid had sped up (hyperthyroidism) and I was just burning everything off really quick which would explain my weight loss. So we tested my thyroid but it was perfectly normal. In fact, it was exactly the same as my baseline tests from before my first round of Lemtrada. Maybe it was a medication I was on? Everything has been the same for a while except Ritalin which can cause your metabolism to speed up and result in weight loss. Many people abuse this medication for that very reason. So I stopped taking Ritalin (20mg 1X a day) but that was also the same day that I started eating a lot and counting my calories. Yet a week after all that I still dropped 5 pounds… so it probably was not that either. My next thought (trying to be logical) was/is cancer. Low WBC and drastic weight loss. That sort of rings a cancer bell right? Lemtrada can potentially cause all sorts of cancers so it makes sense but I have to imagine that my neurologist would be able to catch that in my monthly labs? Right? Or maybe there is a slight abnormality in my numbers but he is writing it off as “probably nothing”? Because other than cancer the only other thing I can really think of is that I have some sort of parasite. But what do I know, I’m not a doctor, there are probably way more things that could be causing this that I have not even thought about!

All I know is that this has been stressing me out for a while now. Knowing that something is not right but not knowing what it is and seemingly doing nothing to actually find out. I can never get ahold of my neurologist’s office and when I do they always just “take a message” for my doctor and then… nothing. Nothing comes of it. What a surprise. I see him on Tuesday so I have a huge list of things to address building up. I need answers and if I don’t get them I am going to have to start looking around for a second opinion. I really don’t want to jump back into the “looking for a doctor game” but what choice do I have? Lemtrada had some pretty serious potential side effects so when all of a sudden a Lemtrada patient starts having all these problems? That should be taken seriously and not like something “that is probably nothing”.

I also have just not been feeling great overall. Fatigue is an ongoing struggle (I have MS so yeah…) but lately I have felt lethargic so trying to get anything done is just extra terrible. I have not been sleeping well for weeks so I am sure that has a lot to do with it but who knows? Lack of sleep, stress, messing up my wrist? I am sure all of that has “aggravated” my MS. I have been working really hard and pouring a lot of time and energy into helping iConquerMS with their social media because not only do I enjoy it but it helps keep me distracted from the mess that is my life but even that is becoming more difficult for me. I really feel like life has worn me out and it sucks because it’s making me not want to do anything, not even the things I enjoy doing. Most the time I just want to sleep but then as soon as I lie down I can’t sleep because I am overwhelmed by anxiety from both all my thoughts of everything going on and the fear that a loud thud from my brother upstairs will startle me awake as soon as I let myself start to drift. I had said the other day that it is like trying to sleep knowing that after you close your eyes someone will randomly, at any moment, smack you in the face. Could be a minute could be an hour. Hard to relax and fall asleep with that feeling. I would also describe it as that fear of “letting go”. It’s like I am afraid of letting go and “falling” into the safety net called sleep so instead my brain is desperately trying to hold onto “being awake”.

I don’t know how much of what is caused by what. Could all of what I am experiencing be caused by stress or is my stress caused by all of what I am experiencing? What the hell is wrong with my body…

 

 

9 Responses to What the Hell is Wrong With My Body?

  1. Michael Springer says:

    Hi Matt,
    The model we are working with centers around the physical damage of the white matter in our heads but there is a lot more that we are not discussing. There are other structures in our brains that if injured can cause other systems to fail.
    For example the pineal gland is located in the brain. It is called the master gland of the body. If the pineal gland or the neurons going to or coming from the pineal gland are disrupted it can cause our organs and endocrine system to go whacky. This can include adrenal gland and thyroid gland functioning, the regulation of neuro chemicals and other parts of the endocrine systems.
    Most of the neurologists I have talked to do not see the disruption of our endocrine systems as a problem but some endocrinologists are open to discussing the damage that MS can cause to the various structures in the brain such as the limbic system. Our body’s response to trauma can also cause a change in our neurochemistry.
    Since your white cell count is down (presumed lymphopenia and low CD4s) your primary care doc should have referred you to an immunologist. If your immune system is compromised you will need to begin taking antibiotics for bacterial infections and possibly have to infuse immune globulins.
    Since most of us are using Medicare and lots of docs will not accept Medicare it will help if you get established with the largest university medical in your area that you can find. The universities cannot turn you down and they have a full spectrum of medical specialists on board.
    Best wishes,

    Michael

    • Matt Allen G says:

      My immune system is down because we did Lemtrada, we wanted it down it’s just the WBC is a little lower than we wanted. We already checked thyroid levels which are the same as before Lemtrada so it is not that. I need to go see a GP/PCP but I really don’t look forward to explaining why my numbers are all low (thanks to Lemtrada).

  2. Michael Springer says:

    Sorry…that should have been pituitary gland and not pineal tho disruption of the pineal would cause problems as well.

  3. Katherine says:

    Hey there Matt! You’re right…it sucks to have so much going WRONG and not know why or what to do about it! I’d been doing so well for 8 years on Tysabri, but now, as of last month I’ve been taken off of it. Unfortunately, I’m now testing SUPER-positive for antibodies for the PML virus. Which means my body is fighting it’s damndest…actively and aggressively against PML. And yes, Tysabri is the reason my immune system got knocked down this low. But I would NOT change a thing regarding my MS treatment if I had it to do over again. I’m much older than you and I’ve had a good life. Hang in there dude…things will get better for you!!

  4. Jess Nelson says:

    Hi Matt! Strangely I actually really enjoyed reading your blog, as it was something I could find myself relating to. It is so incredibly frustrating to feel like something is wrong with your body, and have no understanding what is going on or why. A few years ago, I was living on a little island din the south pacific. I started get really sick and was dropping weight like crazy (I only weigh 110 to start with, so there wasn’t much I could allow to be losing). I took tons of antibiotics and saw many doctors, but nothing was being fixed. It has been a few years now, and still nobody can figure out just what is wrong. It’s a seemingly helpless feeling. But thank you for your post! I really appreciate how real your writing was, and I thoroughly enjoyed reading it. Are you feeling any better, and have they been able to figure anything else out? Looking forward to reading the rest of your blogs!!!

    • Matt Allen G says:

      Helpless. That is the perfect word to sum it all up and feeling helpless can make you very frustrated/angry. I THINK I am starting to piece it all together. Read one of my more recent posts as I can not explain it all in a comment :p

      • Michael Springer says:

        150mg of Welbutrin ended my fatigue. I am also taking 50mg of Zoloft. After two years I can say that the combination works well for me.

  5. Eunseon Kim says:

    Hi Matt.
    I truly enjoyed reading your post. I read some other postings of yours and I just love how you are so open and be honest with yourself about what is going on with your body. I’m also impressed how brave you are to share your life openly in public. I know sometimes it is not easy to open up your life to people. But you are an inspiration to many!! I will never be able to imagine how it feels like to experience what you are facing daily. It is scary and frustrating that you know something is wrong but there is nothing you can’t do about it. It is something that no one would want to experience. But I learned a lot from how you cope with your life struggles and your resiliency. I hope you feel better soon and figure out what is going on by now.

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