[Eliza and Jordan]

Here’s some more info about me. During a flare up I get these symptoms:
Pain:
Severe pain in chest and lower-back, and pain in all joints is worse.
Seizing:
I was having very violent muscle spasms and tics to move or make noise. Since going on a grain free, soy free, lactose and casein free, nut free low fodmap diet and taking zantac and zyrtec my spasms are only occurring in one or two limbs at a time but they still shake violently.
If I try to move a limb it spasms.

Head / Eyes
pressure and throbbing on back and front of head
Neck and shoulder and upper back pain
pressure on eyes that seems to vary throughout the day, it is painful to move my eyes to the sides most of the time
black pulsing flashes
white flashes (these seem happen more when I take tramadol)
Sensitivity to visual stimuli
Tunnel vision when crashing

Other:
heart rate increases (propranalol helps with this but I become dependent on it if I take it more than once every few days and I build up a tolerance fast)
palpitations
I will feel like it is 90* in a room temperature room and then when I crash I will be freezing.

These symptoms get worse during a flare up but I have these all throughout a typical day.
Psychological:
Thoughts racing constantly
Unable to concentrate
Will completely forget what I was thinking / talking about
Thought block
Anxiety
Difficulty speaking
Tapping of foot

The neurologist I saw said that my spine MRI was normal and that my brain MRI was “probably normal” when I mentioned that it looked like my corpus callosum had an abnormal curvature similar to one posted on this forum.

I saw an ophthalmologist and they dilated my eyes to look inside and also checked the pressure. The ophthalmologist said it looked fine, but this was after I changed my diet and started taking zantac and zyrtec and was having a really good day, I was able to walk with braces and a cane instead of being in a wheel chair, no spasms, and no feeling of pressure on my eyes or head. My symptoms have gotten worse since then, but even though I am stuck in bed are significantly better than where I was before I changed my diet and took zyrtec + zantac. The zantac + zyrtec does seem to help very well with the OI. I have less dizziness, and lightheadedness upon standing, no longer have my vision go black upon standing, but I still have increases in heart rate and shortness of breath which seems to come and go throughout the day but I’m also stuck in bed most of the time because of my knee which has been in a lot of pain with weight on it or movement and is rotating like it has a PCL injury for a couple weeks, and about a month ago before I changed my diet and started zantac + zyrtec I would have violent muscle spasms in all my limbs and neck upon standing.

The mastocytosis society of canada website listed the signs and symptoms of mastocytosis and MCAS and I have had nearly all of them at one point or another in my life, most of those currently, and so have my siblings, cousin, and grandmother.

I have been diagnosed with celiac disease and IBS. I have vitamin D malabsorption for sure, but not sure about the rest. All my blood tests came back “normal”. I try to take daily epsom salt baths, it helps me a lot with muscle pain but it doesn’t touch the pain in my lower back which is the most sever pain I have. I am going to start taking a magnesium supplement and try to get a prescription for cromylin to see if it helps.

From the last week of September to the end of October while I was still in New Orleans I saw the head neurologist at Tulane twice, an ophthalmologist, geneticist (I already have an EDS diagnosis from Dr. Neillson at Cincinnati Children’s, but the neurologist thought this geneticist would be able to help find a diagnosis but she was clueless on EDS), a sleep doctor that only wanted to treat me for sleep apnea which he assumed I had without evidence, and was followed by a pediatrician that tried a few drugs which all failed to do any good, ropinerol and meclizine being the ones I remember off the top of my head. But my parents moved me out of my dorm and back to Indianapolis because I couldn’t keep up with school and they said they would be better able to help me if I was back at home. However since I got back here they have dismissed my symptoms and refused to help me get medical attention outside of anorexia clinics.

[Eliza and Jordan]

Jordan is on Skype right now, so I can do some QA with him.

We’ve had neurosurgeons excitedly suggest shunts. His MRI is posted somewhere in the forums. His headaches are bad, but he isn’t seizing as bad as he used to (back in Sept-Oct2013). Most of his problems are typically on the right side, especially his arms, but it is not uncommon for his left side to be shaking as well. The shaking is not very severe now. The ophthalmologist he saw found no sign of intracranial pressure, though his MRI seems to indicate otherwise. When he has a flare up, he gets white flashes, and the white flashes increase in frequency when he takes tramadol.

His blood pressure is all over the place (on the low side as usual). We aren’t sure if the zyrtec/zantac combo was helping or if it was his change in diet that helped. Right now, the zyrtec/zantac is not as effective as it had once been. His body temperature is a little on the low side, and has yet to reach 98.6 (it’s usually lower).

He completely forgets what he is talking about in the middle of conversations, very bad ADHD, can’t think clearly, and his thoughts are racing all the time. (adrenaline)
His beta-blocker (propranalol) helps with his high heart-rate. He always has a high heart rate, but when it gets to the extremes, propranalol helps.

His nausea has been really bad recently, likely the combination of his celiac, IBS, adrenaline-dysautonomia (gastroparesis really), cervical instability, and the medication (vicodin and tramadol)

Jordan will update me as to what goes on in his flare ups nowadays.
He’s had a nasty day. His folks essentially told him that they will stop taking care of him today.

[Eliza and Jordan]

Hi Dr. Diana,

Oh God, where to begin. He is at least alive, and capable of small movements and talking. When he removed allergens from his diet, his muscle spasms decreased significantly. Since I am not with him right now, I can’t report exactly how bad they are, nor can he tell me since his memory and his mental functions in general haven’t been so good. He’s been doing hot magnesium baths daily (should he take more magnesium?), and the floor helps him keep his hips in place.

His knee is messed up real bad and his folks won’t arrange for an appointment with his orthopedic doctor, despite the fact that he’s been complaining about this for a whole week. We suspect it’s a posterolateral knee injury of sorts, since his calf is rotating far beyond what it should. For now, we will try to keep it in a cast.

In a few weeks, I’ll have to rescue him from his household, where they neglect him. They forget to feed him, and he’s already 117lbs at a little over 6 feet tall. His heart rate is still very fast, his headaches are severe, he can barely walk (he shouldn’t be walking with the PL knee injury), yet his mother forces him to walk up and down a flight of stairs to get his food. He fell on the stairs once, and his mother, father and sister did not leave their dinner to help him. They rarely speak to him, they treat his room like a storage unit- as if he did not exist.

As soon as he hears back from his orthopedic doctor, he’s leaving, and I’m taking him back to New Orleans to take care of him.

And this blows my mind. I’m a full time college student (only 19 years old, to boot), with a part time job, with no parents, and yet I can take care of him better.

We have a plan as to what he needs:
-gain weight (target weight of at least 135-140lbs)
His family physician was afraid to prescribe him diamox because his weight was so low, that the doctor feared that any adverse reaction, even the dehydration, could send him into shock or a similar such shitty situation.

-diamox
We can easily purchase this online or my brother can make a trip to south america, or see you in Dallas, but how much? How frequently?

-mast cell stabilizer
If it came down to it, we could buy this online as well. But again, how much, and how frequently? I hear of sodium cromolyn, but what form of it? There’s the OTC nasal spray according to wikipedia. Is that good? Is the inhaler better?

We will continue his allergen free diet (no processed meat, no eggs, no dairy, no soy), with an emphasis on ground meats (easier on his tummy) and coconut oil (the med. chain fatty acids are also much easier on his tummy). He cycles his calories in a way. Some days he can eat nearly 4000 cal, and the next day, barely 1500. (He gained 5 pounds quickly this way, but quickly lost that 5 when his mother forgot to get him food, and he was left with moldy bacon and fruits). We will continue his use of cannabis since it helps his pain more than vicodin or tramadol, without upsetting his stomach (in fact it helps with his stomach motility).

He has a neck brace, but he wants a better one. The one he has doesn’t seem to support his head near enough. Do you know of a good one? (If only he could get a brace for every joint in his body- a full body suit that ensured that everything moved in the right place).

I think you understand that feeling of being overwhelmed. I just want Jordan to get better. As soon as this spring semester comes to a close (May 2014), I’d love to move to Dallas and work with you in researching EDS. I want to know all there is about keeping Jordan healthy, and keeping others afflicted with similar issues in good health as well. I’m amazed by how many people exhibit health traits so similar to EDS.

[Eliza and Jordan]

I think the heartbeat issue is related to having such low blood pressure and your heart having to work significantly harder to pump blood through your body. Are you anemic?

The burning in your stomach sounds reminiscent of ulcers. I’m hardly an expert ( I don’t even have EDS, but I’m taking care of someone who has it). Perhaps try removing gluten, dairy, soy, eggs from your diet. Do this for at least a month.
Try eating these:
chicken
beef
leafy vegetables

If you get nausea, try limiting your fat intake. If it helps, continue eating low fat. Otherwise, continue eating fat as it can be easy on the body (especially medium chain fatty acids like those in coconut oil).
Do you poop regularly? How frequently do you poop? It seems like an awkward question, but it helps in determining how quickly your stomach is processing food. Gastroparesis is not uncommon in those with EDS.
How frequently do you pee? Another awkward question, but if you pee a lot, your body is losing vital salt that it needs to help maintain blood pressure.

My guy (with EDS-hypermobility) has a fast heart rate and chest pain, much like you describe. We haven’t yet been able to attribute it to anything other than his POTS. You most likely have POTS. Dr. Diana mentioned a combination of zyrtec and zantac in dealing with POTS. Staying hydrated and eating salt helps with the blood pressure, since salt helps the body retain water and thus increases blood pressure.

Be very careful about operations. People with EDS often have a lot of complications with operations. Try to explore every possible option before an operation.

Welcome to the terrifying world of EDS, were you must learn everything you can about your illness, because most doctors won’t know anything. That being said, the internet is an amazing tool. Make use of Dr. Diana’s posts and the discussions on Inspire.

[Eliza and Jordan]

I’m noticing another small trend with people who have chronic arthritis. They have fast, fast livers. That is, they can process medication extremely quickly.

The other thing I’ve heard that some do very well on low carb diets. Are not carbs processed by the liver?
Is there a relationship between the ability to process medication quickly and the effectiveness of a low carb diet?

How would I begin to explore this relationship?

[Author]

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