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Mystery Diagnosis – Transverse Myelitis

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If you want to know what happens when you get transverse myelitis and how confusing it is for doctors to diagnose this rare disorter that I also have, this episode of Mystery Diagnosis gives you a pretty accurate account of what was happening to me in the hospital the first trip in June.

Thankfully, I was in hospital already when my TM finally struck, so once it hit things moved pretty quickly to diagnosis from that point.  Of course, I barely remember any of this because I was so sick and on so many pain meds at this point.

What happens at chemo?

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I bet some of you are wondering what actually happens at a chemo session.  So I figured I’d break it down for you.

I am lucky because I only have to do my treatment every 3 weeks.  There are people that come in days in a row for weeks or longer.

Here is how it typically goes.

You show up and check in.  You are given a folder of your orders and you take them down to a box in the corridor and put the folder in and wait to be called.

When your name is called, you weigh in and the nurse takes your vitals.

You are given a wrist hospital name tag with your information.  I guess this is so a nurse doesn’t screw up and give the wrong toxic meds to someone.

Depending on if there are seats available you will either be asked to wait or directed to a room.

I have been in the two group rooms at UCSF transfusion center.   One of these is split in two with 3 beds in each of the half rooms.  They are full hospital beds. These rooms are pretty tight.  The nurses play music (K-FOG) in these rooms which makes it a little more cheerful and lively. The other room is larger and has 5 seats and 2 beds.  The large room is really quiet.  Slightly more depressing, but you have more room to breathe.

Every time you come you are assigned your personal nurse who will take care of you the entire time.  The nurses are so amazing.  They are really kind and caring to all their patients.  They do their best to make you comfortable by bringing you snacks (graham crackers and saltine crackers), water or warm blankets.

Then you get to the stickin part.  Your nurse will go through your instructions with you of what drugs you are going to get that day.  And then you get attached to your IV and drip.

My order is:

  • Saline for hydration – 1 hour
  • Solu-Medrol – 1 hour
  • Mesna – 20 minutes
  • Cytoxan – 1 hour
  • Lupron injection in the butt.  This is meant to protect me from becoming infertile from the chemo.

It is a pretty boring experience.  I usually take a snack along and a bunch of electronics to keep me entertained.  in fact, I am writing this blog post from my chair with my feet up.

You would also think that it might be fairly depressing being surrounded by a bunch of sick people.  It isn’t.  Everyone seems pretty OK with their situation.  Either they do chemo a lot or they have accepted their illnesses.  I know that I have accepted mine and think of these chemicals being dumped into my body as something that will be healing.

Thankfully I have not had side effects from the chemo because I am on a lower dose than a cancer treatment, so I can’t say that chemo would always be this agreeable.

And, that my friends, is the chemo experience that I have had.

Healthy Health Update

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2012 08 22 20 52 05

It is September and the weather in San Francisco is beautiful, if not a little chilly.  I have been slowly getting back to work and finally last week spent an entire 40 hours on the computer.  Yes, not all of it was spent productively working away, but at least my stamina is coming back.

Tomorrow (Monday) is another round of chemo.  It should be the last round if all the blood work comes back healthy, so fingers are crossed.

On the transverse myelitis front I am having a good amount of pain that radiates from my lower spine and downwards.  I attribute this to nerve sensation coming back, so I believe that this is a good thing.  Previously my butt was basically numb.  There are some other complete downers to the nerves coming back apart from the pain, but I will spare folks those details.  Let’s just say that spinal cord injuries are a total bitch.  I should basically be looking at up to a few years of nerve healing to make it from my spine down to the tips of my toes.  It is said that nerves heal about 1mm a day, so nerves from lower spine to toe is about 500mm.

On the brain seizure front things seem to be good. No new seizures. I have adjusted well to the dilantin medication.  I am no longer as fatigued as I was when I first started taking it.

One issue that I am currently having is with some beta blocker medication that was prescribed to me for tachycardia (rapid heart rate).  It is making my Raynaud’s Syndrome (cold ass hands and feet) much much worse. It is also making me feel a bit dizzy.  I guess a visit to the cardiologist is in order.  Yay.  Add another doc to my list.

All in all I am feeling pretty darned good.  My brain is finally functioning well again.  My spirits definitely continue to be up.  I have been spending a lot of time with family and friends and I really really believe that it has been speeding the healing process along.  I am trying my best to have a good laugh every day (and a good cry).

That is all for now.  I’ll check in post chemo Monday!

 

Summary of things…

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My mood changes like the San Francisco weather these days.  I can go from happy and hopeful to sad and fearful in about 2.4 seconds.  I think you can tell from my trash can what mood I was in this morning.

I should be sponsored by Kleenex for tissues and Walgreens for medications.

And I’d like to thank Arlie for cheering me up this morning by telling me to watch the paralympics for inspiration.

Things you probably don’t know about transverse myelitis

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Not that I would expect anyone to know a whole lot about transverse myelitis, but here is more information on the spinal inflammation that I have and why I walk with a cane these days.

By Kevin Weilacher

1. It is a cousin disorder to Multiple Sclerosis. http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/project_restore/conditions/

2. Fairly rare disorder, only 2-5 people per million get it. http://www.ncbi.nlm.nih.gov/pubmed/8489410?dopt=Abstract http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400871/

“The incidence of ATM is between 1 to 8 per million populations in one year.”

3. Approx. 1400 new cases a year in the U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

4. Roughly 33,000 people with TM in U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

5. Transverse myelitis occurs in adults and children, in both genders, and in all
races. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

6. Can be Acute (happening within hours) or Subacute (happening within days or weeks)

7. The inflammation that causes such extensive damage to nerve fibers of the spinal cord may result from viral infections, abnormal immune reactions, or insufficient blood flow through the blood vessels located in the spinal cord.
Transverse myelitis also may occur as a complication of syphilis, measles, Lyme disease, and some vaccinations, including those for chickenpox and rabies.

8. Can be Idiopathic (no known cause)

9. Typically a one time occurrence but there are some that have recurrent TM.

10. 10% or better possibility of developing Multiple Sclerosis but the possibility is fairly low if there is a normal brain MRI at TM onset…http://www.ncbi.nlm.nih.gov/pubmed/18080852

11.Most symptoms of TM are identical to MS

12.Prevailing difference between TM and MS is that lesions are on spinal nerve in TM and on Brain in MS.

13.Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

14. The inflammation and lesion created, is caused by the bodies own immune system attacking the myelin coating of the spinal nerve.

15.The segment of the spinal cord at which the damage occurs determines which parts of the body are affected. Nerves in the cervical (neck) region control signals to the neck, arms, hands, and muscles of breathing (the diaphragm). Nerves in the thoracic (upper back) region relay signals to the torso and some parts of the arms. Nerves at the lumbar (mid-back) level control signals to the hips and legs. Finally, sacral nerves, located within the lowest segment of the spinal cord, relay signals to the groin, toes, and some parts of the legs. Damage at one segment will affect function at that segment and segments below it. In patients with transverse myelitis, demyelination usually occurs at the thoracic level, causing problems with leg movement and bowel and bladder control, which require signals from the lower segments of the spinal cord. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

16.About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms; they regain the ability to walk normally and experience minimal urinary or bowel effects and paresthesias. Another one-third show only fair recovery and are left with significant deficits such as
spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence. The remaining one-third show no recovery at all, remaining wheelchair-bound or bedridden with marked dependence on others for basic functions of daily living. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

17. Four classic features of transverse myelitis emerge: (1) weakness of the legs and arms, (2) pain, (3) sensory alteration, and (4) bowel and bladder dysfunction. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

18. Pain is the primary presenting symptom of transverse myelitis in approximately one-third to one-half of all patients. The pain may be localized in the lower back or may consist of sharp, shooting sensations that radiate down the legs or arms or around the torso. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

19. Patients who experience sensory disturbances often use terms such as numbness, tingling, coldness, or burning to describe their symptoms.

20. Up to 80 percent of those with transverse myelitis report areas of heightened sensitivity to touch, such that clothing or a light touch with a finger causes significant discomfort or pain (a condition called allodynia).

21.Many also experience heightened sensitivity to changes in temperature or to extreme heat or cold.

22.Bladder and bowel problems may involve increased frequency of the urge to urinate or have bowel movements, incontinence, difficulty voiding, the sensation of incomplete evacuation, and constipation.

23. Body temperature of those with TM is typically lower than a normal person.

24. Most people with TM have poor circulation even if paralysis is limited.

25.It is often difficult to distinguish between a patient with an idiopathic form of transverse myelitis and one who has an underlying condition, therefore the diagnosis is often delayed, sometimes for months or years.

26.Depression is extremely prevalent in patients with TM. http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/transverse_myelitis/longer_term.html

27.Diagnosed with a neurological examination, MRI of the spinal cord and brain, a spinal tap, evoked potentials, blood tests to rule out potential conditions that mimic TM (vitamin B12 deficiency, lyme’s disease) and causes such as viruses and autoimmune diseases. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

28. Physicians also may perform myelography, which involves injecting a dye into the sac that surrounds the spinal cord. The patient is then tilted up and down to let the dye flow around and outline the spinal cord while X-rays are taken.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

29.No effective cure currently exists for people with transverse myelitis

30.Treatments are designed to manage and alleviate symptoms and largely depend upon the severity of neurological involvement.

31. Stem Cell research is currently the only hope for a cure for TM.

32.Transverse Myelitis is sometimes a “But you don’t look sick” condition.

33. Ringing in the ears (Tinnitus) is very common in neurological disorders..ie:MS, TM, Migraines…. http://uprightdoctor.wordpress.com/2011/01/16/chiari-malformations-and-cranial-nerves/

34. Extreme fatigue is a common occurrence in those with Transverse Myelitis. http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/transverse_myelitis/longer_term.html

35. Transverse Myelitis can possibly affect only one side of the body if the TM has been brought on by an onset of Multiple Sclerosis. http://rarediseases.info.nih.gov/GARD/Condition/7796/QnA/22164/Transverse_myelitis.aspx

Sun sensitivity in lupus

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Leaving my house these days takes almost as much energy as actually going out.  It is pretty complicated due to the fact that I have sun sensitivity issues related to the lupus.

Until last year I didn’t even know that I had any sun issues.  I happily would hang out at the beach and never have any issues.  But when I was in Kauai with the fam I noticed that my fingers were turning red and blistery.  They burned and hurt a bit.  I still didn’t relate this to the lupus.  When I came back I went to my regular rheumatologist feeling ill with joint pain and fatigue.  He visit he took one look at me and said, “You have been in the sun.”.  Doh, foiled again by that darned lupus.

Turns out that photosensitivity is a common issue for lupus cases and I am not anything special in that regard.

How does photosensitivity show up in lupus?

  • Sunlight can cause new skin lupus lesions (sores).
  • Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
  • Some medications increase the effects of the sun on a person’s body. People with lupus taking these drugs including tetracycline antibiotics and many others may also very occasionally develop “phototoxic” reactions.

Back to the issue of getting me out of the house in this California sun.

Basically it takes a lot of sunscreen, SPF 50+ (I prefer 70), slathered on every inch of exposed skin.  On top of that I try to cover up my arms and legs with t-shirts and pants.  Gone are the days of short shorts.  I have to remember to cover the tops of my feet if I am wearing shoes without socks.  I try to bring a hat.  Thankfully for me, San Francisco is pretty kind to this type of dress.

When I am out, I do my best to hide as much as possible from direct sunlight.  I seek out shady spots.  I try to not go out in peak sunlight hours (10am – 2pm).  And I reapply sunscreen often.

I know that when I write this out it sounds like a giant hassle, but it isn’t so bad once you get used to it.  My thought is that everyone should probably be wearing sunscreen all the time anyway.  I figure that when I am 90 and all of you have skin like a dried out onion, I will still be looking 35 with soft beautiful skin.  And then the hassle will all be worth it.

What is Wrong with Nerdgirl?

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I know I haven’t fully disclosed what is going on and why the chemo and all the other rehab and hospital visits.  It is really, really hard for me because it is the most frightening thing I have ever had to deal with in my life. So to say it out loud (or blog it) is a tough one.

Background

I was first diagnosed with lupus when I lived in Spain.  My symptoms at that point were the occasional swollen hands or fingers turning blue when it was cold.  All things I could and did live with for a long time with no other symptoms.

When I moved back to the US a few years ago to start Grows Up everything changed.  My beautiful long hair started to fall out in clumps.  I started getting random red spots on my body.  It was pretty horrible stuff and very stressing.

I went to a rheumatologist at UCSF and we began this long path that got slowly and progressively worse.

First Hospital Stay – Transverse Myelitis

In June, after months of fighting random fevers, rashes, extreme fatigue, urinary issues, etc… I finally ended up in the ER.  This kicked off a 2 week stay.

During that stay I collapsed on a nurse when I was walking down the hallway. My legs had given out.  I could basically barely move and everything from the waist down was numb and tingling.

This turned out to be transverse myelitis something that is rare (only about  4 cases in a million reported each year), but also very devastating for many people.

It is a neurological disorder caused by inflammation across the spinal cord.  When it finally sets in it causes some type of paralysis.  In the very extreme cases it travels upwards shutting down the ability to breath making people paraplegics.  Thankfully I was lucky and everything was from the waist down.

I was diagnosed, release and began to try to rehab.  I went quickly from not walking, to walker, to cane and the numbness began to subside a bit.

At that time, the doctors decided that I should do a course of chemo to really put the lupus back in check.  The chemo would be followed by another immunosuppressant drug called CellCept that I will continue on with.

Second Hospital Stay – Brain Seizures (Frontal vs Temporal Lobe – The Battle for Control)

Then at the end of July, I woke up one night and was frantic.  My mom has been staying with me since June because I am too weak, tired or mentally confused to do many things for myself. I couldn’t get back to sleep that night and ended up calling an ambulance in the morning.

Another week spent in the hospital and this one was much much worse than the first one.  I don’t remember most of it.

The doctors were stumped as to what was happening to me.  I had about every team in the hospital trying to figure it out.  Cardiology, neurology, rheumatology, psych and more visited my room twice a day.  I had MRIs, CAT scans, blood test for everything (including ebola).  Still no one could figure it out.  I am told that I didn’t sleep the entire time.

Finally, they concluded from an EEG (brain monitor) that I was having severe brain seizures of the frontal and temporal lobes caused by the lupus.  I was put on a medication and within 30 minutes I was coherent again.  And scared to death.

I hope to never experience something as scary as losing my mind again.  I had moments during that week where I would be coherent and know that something was going on and all I could do was cry because I was so frightened.  Thankfully I had my mom there the entire week.  I can’t even imagine how scary it was for her to see me go through all of that.   Mark would come and relieve her during the nights and just hold me and reassure me while I cried and cried.  Words can never express how grateful I am to both of them for comforting me that week and still.

The Future

I’ve been out now for a few weeks and faithfully taking my anti-seizure medication.  At first it caused confusion, but now it seems to be mostly regulated in my system.  I am still weak and tired, but getting better every day especially with the help of my family and friends.  My new job has been amazingly understanding and I am also grateful for them.

All of this has been emotionally traumatizing, but I am finding the positives in it.  I really do appreciate so much more than I did before.  I look forward to a bright future that involves a lot more love and a lot more interesting things.  But not to worry, I will always have that bitchy Nerdgirl charm to throw at you.

And, by the way, I’m not listening to Nickelback for inspiration.

Chemo-tastic

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Me fighting!

Today was the second trip for chemo.  Once again, the trip was pretty easy.  The typical day goes something like this.

  • Arrive at appointment (mine at always scheduled for Mondays at 1:00pm)
  • Check in at front desk
  • Get vitals done (height, weight, blood pressure, etc.)
  • Wait for a bed or chair to open up, then your nurse of the day comes to get you
  • Get set up and they run through everything you are going to do for the day
  • Get IV put in
  • Sit for however long it takes for all the treatments

It is pretty amazing how many people are in there.  You can tell the seasoned veterans who are on regular chemo treatments nearly every day.  Everyone is really nice and caring.  The nurses are all very sweet and have conversations with everyone.  They remember every detail that you told them last time and genuinely care about their patients.  Very heartwarming.

You would think that going to the infusion center might be depressing.  Honestly,  for me, it is the opposite of that.  From my perspective, I see people who are fighting the battle for their lives and winning (at least from a positivity point of view).  It makes you realize that we as humans, despite all the bad in the world that we have created, are also amazing and resilient creatures.

Fight on!

My Desired Things

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by Max Ehrmann

Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its shams, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.