Day 34 of the Dr. Amy Myers nutrition protocol

I have been remiss in writing in this diary/blog as of late because I've been battling my brain!  Since last I wrote, I have been having anxiety/panic attacks and deep dives into depression. The Doc says this is not part of the autoimmune disorder, or the medicines HE has me on, but just the culmination of the stress and worry about my health. He says I'm under a lot of that, and my normally, pragmatically positive "can do" attitude is just finally being impacted.

I'm writing this in the doctor's office where I am getting my 2nd infusion of chemotherapy (Rituxan).  It's 10:45 am and we just started the Rituxan drip so I will be here awhile.  Before we could start the Rituxan, he gave me an infusion of super steroid of some kind for my left and foot.  He's afraid I'm going to have permanent foot drop if we don't do something about it NOW.

You see, I have tingling and numbness in both feet, and all the way up the left leg.  But, I've lost the dependable use of the toes on my left foot.  I can't raise the toes on demand the way a healthy foot would.

The Doc (my rheumatologist) says I have Mononeuritis Multiplex.  WHAT?  Never heard of it.

The Johns Hopkins website says this 

“Mononeuritis multiplex” refers to severe patterns of weakness or clumsiness causing weakness or paralysis of different muscles. These more cataclysmic episodes of numbness or weakness necessitate a thorough diagnostic evaluation, both by nerve-conduction tests, and often by biopsy of nerve and/or muscles. Mononeuritis multiplex occurs when there is inflammation of small blood-vessels. The muscles and nerves nourished by such blood vessels may be deprived of oxygen and nutrients, and is similar to a “stroke of the nervous system.” In such cases, ameliorating symptoms of pain is not sufficient – immunosuppressant therapy is always warranted in cases of mononeuritis multiplex.

The pace of recovery from mononeuritis multiplex can be frustratingly slow. In some cases, it may be difficult to determine whether the slow pace of recovery is a manifestation of the slow process of healing and “rewiring,” or is due to ongoing and ineffectively treated inflammation. In such cases, repeat nerve-conduction tests may be important. Immunosuppressant medications which may be used in the pattern of mononeuritis multiplex includes cyclophosphamide, azathioprine, as well as prednisone.

OK!  So another symptom!  Actually, aside from feeling unbalanced and having a hard time using the leg it hasn't been that problematic.  The hardest thing out of all the symptoms has been the depression I referred to earlier which has popped up in the last two weeks.  The dives into despair have been the most uncomfortable so far!

Put the Lime in the Coconut - Another Doctor - Jan 18, 2021

Put the lime in the coconut ... so many doctors, so little time, so many ideas!  Went to see a practice that specializes in PAIN this afternoon about the itching (hoping to get acupuncture and try that) - nope have to sign up and start physical therapy. Rats! another appointment to book, remember, and show up to!

The Coconut song kept playing in my head the whole time ...I guess because there's grain in there, there's gluten, so can't have that.  Hmmm ... let's devise a gluten-free party drink.

Play the Practical Magic "Coconut" video HERE.        

That's ok - my left foot is not working right and it's affecting my leg and so now I'm limping!  They want to try some PT on that and maybe talk me to an injection in my ankle, although they were saying it's probably a lower back issue (!) and let's do ANOTHER MRI - my 2nd so far this year and it's only Jan. 18.

It's hard to sew, paint, and do some of the things I would like to do because my hands are unsteady.  But I do like to read and look at decorating books. I have one out from the library by Carolyne Roehm called A Passion for Blue & White.  Gorgeous pictures of gorgeous rooms that calm my nerves. I'm also going through a blue and white decorating phase now so that's good. Color is everything to me. Right now this autoimmune disease is RED. I used to love red. Not so much now.

So, tomorrow at 7 am my friend Pam will take me for my first chemotherapy  - they call it Rituxan or Ritiximab - in an effort to deal with the inflammation. Anyway, it's like 5 hours long and they told me to pack a lunch!

Should go to bed now. More on how that goes later.

Woman driven crazy by Prednisone murders pineapple - 1/16/21

Blog#5

Jan 16, 2021 

The itching / tingling across my torso is really getting to me this morning ... If I didn't have this symptom, I doubt I would take the Hydroxyzine which makes me tired, and the Prednisone which is just making me feel very weird all the time (spaced out, dizzy, like I could faint at any moment, although I haven't yet) and has now made me descend into a level of irritability that is not normal for me.

Hence the poor pineapple.  I was just too irritable and woozy to dissect it properly.

However, if it were not for the itching and tingling, I would not have been as desperate to find out the reason for it and pushed for an answer.
I have Microscopic Polyangiitis, which is a type of Vasculitis, which is a type of AUTOIMMUNE disorder.

After 7 months and 7 months of doctors saying they didn't know what I had - what was making me so miserable - my doctor of Rheumatology at the Colorado Center for Arthritis & Osteoporosis announced on the morning of New Year's Eve that it was Vasculitis Microscopic Polyangiitis (MPA).

Happy New Year! 

MPA is a rare disorder that causes the immune system to attack blood vessels. Vasculitis is an autoimmune disease that causes inflammation and narrowing of blood vessels (arteries, veins and capillaries). These vessels carry blood to and from the heart and the body's organs.

As the webpage for Johns Hopkins notes, “Many signs and symptoms are associated with MPA. This disease can affect many of the body’s organ systems including (but not limited to) the kidneys, nervous system (particularly the peripheral nerves, as opposed to the brain or spinal cord), skin, and lungs. In addition, generalized symptoms such as fever and weight loss are very common.”

 

With me, it’s the itching/tingling and fatigue that are most problematic.  Oh yes, and the dizzy-crazy-unbalanced feel caused by the Prednisone and Hydroxyzine. For a person with many interests and things that I want to do, these symptoms and side effects are very hard to deal with. I'm not one to lie around!