Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Catching Up

Written by Katie. Posted in Diagnosis Path

 

How did all this start?  Well, for the past couple years I had taken up running and was really proud of how strong I was getting from running 4 days a week.  I was increasing mileage, I was maintaining a healthy weight, and it just really made me feel good to get those endorphins pumping.  My goal was to run a half marathon before Brad and I started to try and have kids.  So I was following a training plan, teaching, and living life like a “normal” 28 year old.  Life was good.

Health wise, as I ran more and more I noticed that my back began to get increasingly sore and tight, while I started to have some not fun GI issues-pain, bloating, constipation…As this continued and started to get pretty bothersome, I made an appointment with my family doctor.  She ordered a few tests which came back normal, and referred me to a GI doc.  He ordered tests, which also came back normal.  In the meantime, it seemed like I tried everything for my stomach issues-tons of water and fiber, no wheat, no dairy, no soy, gluten free, Senna and other laxatives, and the list goes on…   

As I continued to run, I still noticed that my increasing back pain and soreness seemed to go with my GI problems. I sought out a great chiropractor and massage therapist, thinking my problems could be related to my alignment.  I went to chiro and massage treatments for 3 months with no major relief. 

At this point, I decided to make an appointment with the sports medicine doctor. Based on my back pain he ordered a thoracic MRI which showed disc herniations, spurring, and a moderate herniation at T10-11.  I also started acupuncture treatments for both my back and stomach problems.  At this time I also started to drink more liquids because I was having a lot of trouble digesting solid foods.  I had better luck with this liquid diet and continued with it.  I started to lose more weight but I had better relief with my GI problems following a liquid diet rather than a solid food diet. 

At the end of May I decided to stop running because of the increasing back pain and GI problems. I thought that if I took a break from running, my body would begin to heal.  Little did I know that stopping running would cause everything to come crashing down in terms of many of my body systems and functionality.

The sports medicine doc wanted to put me on Prednisone for inflammation but wanted to rule out MS first.  In the middle of June I had a brain and cervical MRI which seemed to rule out MS.  I started noticing more tingling, spasms, and shocky feelings throughout my body.  My legs began to feel weaker and wobbly. My trunk also felt so weak, like I could not hold myself upright. I began to not be able to stand for more than 10 minutes.  I started to feel so weak, dizzy, nauseas, and like it took so much energy out of me.  I started to need to find chairs to sit or lie down.  This usually helped take the symptoms away.  However, I often still had back and GI pain with sitting and lying down.

I was referred to the first physiatrist, for a thoracic epidural.  He said we wanted a lumbar MRI first before I saw him.  I had the lumbar MRI at the end of June which showed mild herniations as well as a moderate herniation at L5-S1. At this time, my GI problems continued to get worse so I decided to go back to the GI doctor.   I kept losing weight.  I also had to cancel plans because I knew it would be too hard for me to stand and walk without feeling like I was going to pass out.  I went back to the GI doctor and had an abdominal ultrasound, an upper endoscopy with a celiac biopsy, and a HIDA scan of my gallbladder which all ended up to be normal. 

Through July I continued acupuncture and began physical therapy.  I had a consultation with the spine specialist for the lumbar epidural.  He said he wanted to do an EMG first, which he reported was normal.   I had the lumbar epidural on July 29th.  I was very sore afterwards but it subsided.  I did not experience a big difference in pain and relief from symptoms from the epidural.

At the end of July I attended a vigil for a child who died from the school where I teach.  At the vigil I had to stand for an hour and a half.  I thought I was going to die. I knew something was really wrong.  I felt intense compressing and squeezing, pain (especially around my ribs), and a lot of body heaviness with standing.   It was hard to breathe and I felt so dizzy and nauseous like I was going to pass out.  I had to lean on my husband Brad so I didn’t pass out or fall. Throughout the vigil I did not realize that candle wax from the dripping candle was burning my arm because I felt so sick.  After I finally was able to sit down, I felt so exhausted like I had just run a marathon.  I had a horrible headache and it was hard to think straight.  However, after sitting down for a while, I felt much better but still felt some back/rib pain.  I realized at the vigil that night that again something was really wrong, and wondered if it was neurological.  I asked to see a neurologist, and got into one at the beginning of August. 

The neurologist did his exam, listened to my symptoms and stories, and looked at my MRI’s.  He said he did not find anything significant and his exam was normal.  He had two suggestions:  1. Look into Churg-Strauss vasculitis because I seemed to have markers, I was taking Singulair for 6 years, and I had symptoms that could suggest it (which matched with a girl’s case who he had previously reviewed who was diagnosed with Churg-Strauss).  2.  He said another suggestion was to see a Neurosurgeon about the discs. Another Thoracic MRI with dye was ordered to see if the disc damage had changed.  The second thoracic MRI appeared the same as the first.

I chose to investigate the vasculitis since my sister had been diagnosed with PAN vasculitis 2 years prior.  I saw a rheumatologist in Lansing who ordered a lot of blood work, a sinus CT, and a chest X-Ray.  Because I had high IgE’s, she sent me to an allergist, which showed allergies to trees, dust mites, cats and dogs.  The testing showed no food allergies.  My CT scan (as well as the June brain MRI) showed sinus disease. The chest x ray and urine tests were normal.  My blood tests showed a slightly high white cell count (12.5) and high IgE’s (78.6).  From the testing she did and my symptoms, she did not seem confident with a vasculitis diagnosis.  

Because of my sister’s struggle for a diagnosis, and knowing how rare vasculitis is, I chose to go straight to a vasculitis expert who could either rule it out with confidence, or confidently diagnose me.  I went to Cleveland Clinic and saw a vasculitis specialist.  After the consultation, the doctor said she could rule out Churg-Strauss confidently.  She gave me two suggestions:  1. Start fresh with a GI doctor to look at motility and function of my stomach rather than structure. 2.  Look into a possible small fiber nerve test.

I also saw a wellness doctor at the end of August.  He was confident he could help me put the pieces together.  He started me on supplements and probiotics right away and ordered more blood testing as well as a cortisol saliva test.  He also gave me a B 12 shot as well as homeopathic shots in my back.  The shots seemed to aggravate the back more.  The wellness doctor also referred me to a cardiologist because of the body heaviness, dizziness, and weakness I was experiencing with being upright, to make sure everything was fine with my heart. He also suggested I follow an anti-inflammation diet-no wheat, dairy, soy. 

My blood work that the wellness doctor ordered was normal, and the probiotics seemed to help me have more bowel movements but the bloating did not subside.  I still had a lot of GI pain and with eating a small amount, I felt like I had eaten Thanksgiving dinner.

The cardiologist visit scared me to death.  I had an EKG, heart ultrasound, and stress test.  I made it on the treadmill at 2.0 for 3 minutes and 30 seconds before I got extreme body heaviness, dizziness, nauseasness, and felt like I could not keep upright and like I was going to pass out.  The nurse had to help me off the treadmill.  I felt like I was falling forward.  It was hard not to be devastated– I was just running 7 miles at 7.0 5 months ago!  The good news was the cardiologist said everything looked good from the heart stand point, and even though my body could not make it a long time, it seemed my heart could have.  To be safe, he had me wear a holter monitor for 24 hours, which showed my heart was healthy. The doctor commented that my symptoms to him indicated more of a neurological problem.  

When the wellness doc called me to check on me, I relayed what happened at the heart doc. I also talked about how I had tried to go to church and could not stand or walk to communion without feeling like I was going to drop or pass out.  I also voiced my concerns that my inability to walk, and stand for more than a few minutes was progressing.  I was having increasing dizziness, headaches, weakness, nauseausness, heaviness, and feeling like I as going to pass out with being upright.  I also told him I had been experiencing numbness in my left foot for three days. With that, the wellness doc said he believed that I had something that was neuromuscular autoimmune going on. 

Because of that statement, I started researching neuromuscular specialists.  Because I’ve had good luck with Cleveland Clinic in the past I made an appointment with a neuromuscular doc there for September 8.  The first thing I said to him was I was afraid I was headed for a wheelchair.  He listened to my symptoms, did an exam, and looked at my MRIs.  As he was looking at my MRI’s he noted that my T 10-11 disc was worst on film than on the report and that he needed to refer me to their spine center.  He also said because of my feeling better at rest than with activity, and some of my symptoms were consistent with Myasthenia Gravis, he was going to work me up for Myasthenia Gravis and LEMS beginning with blood tests.  He said that if the blood tests were negative (which they were), than he was going to have me come back for a single Fiber Nerve EMG. He said his neurological exam was normal, and again did not feel I had MS or ALS.

In the meantime, I went to U of M to see a motility GI specialist. This GI doc suspected I had a gastric emptying problem.   He ordered a gastric emptying test which ended up being normal.

On September 24 I returned to Cleveland to meet with the spine doctor who I was referred to, to look at my T 10-11 disc herniation.  Basically, he said that from a spine specialist’s opinion, it was not my discs causing all of my symptoms or back pain.  He said years of gymnastics most likely progressed the way my spine is now, but my problems are still not coming from nerve roots/spinal cord.  This spine doc said he believed my symptoms and pain to be more muscular-whether neuromuscular or muscular-skeletal.  He also mentioned possible problems with my autonomic nervous system, a late muscular dystrophy, and mitochondrial problems. 

He was glad that I was following up with the neuromuscular doctor I had seen at Cleveland.  He said that his strong suggestion, depending on what happens with the neuromuscular doc, was he would like me to go to one of the six, functional restoration programs in the country (Five I remember are in Dallas, Baltimore, Cleveland, Chicago, and Mayo).  I would work with a team of doctors and therapists for two-six weeks to figure out the cause of all of the symptoms, and learn how to be functional again to return to “my life,” since my life has come to a halt since June. 

When I got home from Cleveland, I looked up Autonomic Nervous System problems that the spine specialist in Cleveland mentioned…  As I read, I found myself really relating to POTS-Postural Orthostatic Tachycardia Syndrome.  I started to pay attention to my blood pressure when standing and sitting.  When I was sitting, it was normal, but after I had been standing for a few minutes, I would get sick-dry heaves, nauseas, dizzy, feeling like I’m going to pass out, hard to breathe, seeing spots, and my blood pressure seemed to be doing crazy things.  I also noticed that my feet at times were turning purple, like blood was pooling in my feet.  One day I got up to go to the bathroom and my heels were completely numb.  I freaked and called the neuromuscular doctor in Cleveland and his nurse said she would give him the message.  She called me back two days later and said he still needed me to do the single fiber Nerve EMG but he was also going to order a QSART test and a Tilt Table Test, which are autonomic nervous system tests. 

In October, I was referred to another spine specialist (the 3rd) in Fort Wayne to get another opinion about the disc herniations.  This spine doctor spent a LONG time examining me.  He found that I have a pretty major muscle imbalance problem in my back, (left side much weaker than my right) which he explained will take intensive physical therapy to help correct.  He then decided to try 2 nerve blocks-a T-10 nerve block and a T-11 nerve block to see if I got any pain relief in my back.  The T-10 nerve block gave me about 8 days of relief while I did not notice much of a difference from the T-11 nerve block. 

Then the appointment became interesting.  He had me pull my skin from my neck.  He had me bend my body in many different ways (in ways I always felt were normal as a former gymnast).  After this strange exam, he said he would be sending me to a geneticist to see if I have Ehlers-Danlos Syndrome; a connective tissue disorder that can affect the whole body.

Of course,the mentioning of this little known disorder created a whole new host of questions for me that I took home, ready to research.  I researched and researched Ehlers Danlos and as I read, I realized that this could be a highly probable diagnosis.  It explained a lot of the weird things that had been happening to my body-the GI issues, the pain and instability in many body parts, the knee, ankle, shoulder, and collar bone cracking and popping, the TMJ, the inability to hold my head up without a cervical collar, the need for my back brace, the possibility of having POTS.  I wondered after seeing 20+ doctors in the last year if this doctor in Fort Wayne had finally put the pieces together? Was I finally getting to a diagnosis?  Did I really have this connective tissue disorder that is genetic? And if so, what type and what would this mean for my life?  Hopefully many of these questions will be answered on November 18th when I meet with the geneticist in Fort Wayne…

In the meantime while I am waiting to see the geneticist, I traveled back to Cleveland for autonomic nervous system testing, and the single fiber nerve EMG.  I had a QSART test to test the function of the autonomic nervous system and a tilt table test.  Although, the QSART results were not available yet, I was given some information about the results from my tilt table. 

Basically I was told that the tilt table test will give an interesting picture for the doctor.  I started out lying down on the table for 5 minutes while my heart rate and blood pressure was taken each minute.  Then I was tilted upright 60 degrees for 10 minutes.  My blood pressure and heart rate were monitored every minute while tilted.  Basically what it showed was that every time my blood pressure started to drop with being upright, my heart rate would increase to keep my blood pressure up.  The difference between my heart rate from my lying down heart rate (baseline) and my heart rate with being upright was an increase of 28 BPM.   I learned that a POTS diagnosis is an increase of 30 BPM, so I was told by the tech that I am borderline.  Now I am waiting for my follow up with the neuromuscular doctor to see what he has to say about my QSART and tilt table results, and if he feels that I do in fact have POTS.


So…I think that finally brings you up to date.  Next week is a big week. I will be seeing the neuromuscular doctor about the autonomic nervous system results in Cleveland, I will be seeing the geneticist about Ehlers Danlos in Fort Wayne, and I will be having another nerve block in my head for headaches in Fort Wayne.  Hopefully by Thanksgiving I will finally have ANSWERS after 11 LONG months of seeing specialists.  I am not sure what the answers will mean for my future, but I do know that once I have a diagnosis, I can get to work figuring out how to manage it with a plan of attack.

As far as how my life has changed to date, now when I have to stand and walk for more than 5-10 minutes, I need a wheelchair since I get sick with feeling like I am going to pass out, and often have a lot of instability with various body parts.  I have a chair in each room now so I can cook sitting and dry my hair and get ready for the morning sitting.  Some days I need the chairs and some days I don’t.  I have good days and not so good days; especially with the autonomic nervous system problems.  I have found that I need more rest breaks if I am upright for more than a few minutes.  I take Ibuprofen 800 for the pain and the horrible headaches I get from holding my head up, and with increased standing and walking.  I wear a cervical collar to help keep my head up, and when my back is bad I wear a back brace.  I sit in the shower.  I have lost 22 pounds in 5 months, because of the GI issues.  I have found that eating small meals more frequently is helping my stomach. I take multi vitamins, a B Complex, Co Q 10, Vitamin D, and Vitamin C each day. 

It’s been difficult, I’m not gonna lie.  I have periods where I cry and scream and don’t understand how I got here.  But I know in my heart that asking “why” is not productive and the key is to figure out what aspects of this illness I can control.  Things I have found I can control so far are: 

*Seeking out the best possible health care (including the psychiatrist I see biweekly to help me deal with the emotional stress…there is NO shame in that)
 *My attitude
*Who I surround myself with, which means my amazing support system of TRUE friends and family
* Learning how to adapt to situations, and seeking out resources if I need help
 *My eating and nutrition
*My sleeping
*Finding some way to exercise each day; even if it means laying down while I raise my leg up and down. 
*My Faith
*I have also found music to be powerfully calming and healing.    


So I think that is ENOUGH for now. I am impressed if you are reading this sentence because that means you made it to the end of this VERY long, drawn out post.  Thanks for hanging in there.

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Comments (1)

  • C. Wayne Lyon

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    Again, thank you for making these posts. I know this is an older post, but it’s been so helpful, too. I can’t decide if your post scares me because many of our experiences appear to be different, or am I scared because many of our experiences seem the same?

    I’m scared about the differences because I want to be able to finally know what is wrong with me. I know from research that my symptoms line up with EDS with a very strong mix of hyper-mobility (I used to turn my legs almost all the way around and walk forward, along with other bendy things), and skin symptoms (I can get almost a 3 CM pull on the bottom of my forearm). Your POTS experiences seem similar, but so different, too. I don’t feel compression in my torso. I KNOW I have orthostatic hypotension because I can never leave a sitting/laying position without getting lightheaded. I wish I had the energy and time to establish a forum that I could support, as I would moderate symptom discussion to try and keep comments as medically-helpful as possible.

    Ahh… my tangential nature appears again. I apologize for my digression. But I know how you feel. When I started having NOTICEABLE symptoms, I was 321 pounds and often mistaken for a man-whale hybrid. I set out first to get into weightlifting because muscle helps burn fat. I made it to 150 pounds at curling, and my elbows started getting sharp pains ONLY during the workout, and during EVERY workout. Similar pains caused me to abandon weightlifting for getting on the elliptical. I made it up to 8 miles in some days by going 4 miles at a time. Then I couldn’t maintain that anymore. I had lost 70 pounds, so I decided to just try and exercise for health and change my diet more so I could lose more weight.

    Fast forward to now. I have managed to lose 102 pounds, but I had to quit my job helping a SPED boy as an aide because every day ended with my legs being in severe agony from the knee-down. It hurts to live at this point, so part of my brain is ALWAYS calculating risk factors to determine what hurts the least. Just yesterday, I sat on a leather car seat that was burning hot from the sun and decided I would take the burn because I knew moving to put a pillow under me would hurt more.

    I really do not mean to seem like I’m crying on your shoulder. I just want you to know that I get it. And maybe writing this helps me see that other people get me, too. And knowing how scary these symptoms are, your site is probably helping save lives.

    Reply

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