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I have read so many horror tales in the Ehlers Danlos community. I attribute this problem to several factors.

1. We spend so much time seeking diagnosis from multiple specialities.
2. So many of us have medical PTSD – we are so used to not being believed.
3. We are so complicated and rarely present the same as others with EDS since there are so many varieties. We really are zebras!
4. New varieties based on genes are a given and so many of us are still lacking a specific variety diagnosis.
5. The percentage of us who are also autistic may be very high.
6. If you spend enough time looking for a diagnosis, someone may tag you with mental health issues instead of medical issues.

That’s the Ehlers-Danlos picture. Now that I have been officially diagnosed with Myasthenia Gravis as well, I can see how this compares to that rare disease group. The symptoms of Myasthenia Gravis can vary widely among patients. It is referred to as the snowflake disease because of that.

1. Some spend years trying to get a diagnosis.
2. Most symptoms are neuro muscular so it can be more obvious what specialist is needed, i.e. neurologist.
3. There are few neurologists who know enough about MG to diagnose it and a shortage of neurologists in general.
4. Since many have ocular symptoms first, we may spend more time with opthamologists than is necessary, delaying diagnosis.
5. There are blood tests and most docs know that but many are not aware that you do not have to have a positive blood test for MG.
6. Too many doctors are willing to pursue rare diagnoses without the knowledge of the condition. Then too many will tell a patient they don’t have MG or EDS or …
7. Too many doctors only want myasthenia gravis symptoms – raising questions about things that aren’t accepted as MG and can muddy the water. But muscle weakness does create a potential for additional symptoms – such as a headache from the weak neck.
8. If you have one auto immune condition, the risks of having others rises.

So there’s a lot of differences but there are also similarities. Both conditions are primarily found in women. In fact women are more likely to have an auto immune disease. Lupus and sjorgrens are both 95% women. The preceding link describes this in detail. Another commonality is rare disease. The less of us, the less it’s known, the harder it is to get a diagnosis.

But one of the other risk factors for auto immune is genetics. And EDS is genetic. My neuro mentions the connection frequently. If you have EDS, you have a stronger likelihood of having an auto immune disease. He believes this needs to be better understood and based on his reasoning we all should have a full screening for auto immune diseases. Yeah, right.

So the stories I hear from MG patients are usually in the realm of not being believed, docs who deny you can have it, docs who don’t know what they are talking about and the difficulty of finding an appropriate doctor. Sound familiar?

Only, the other difference is for most EDS patients is that EDS in general is not associated with mortality (vEDS certainly can be). Myasthenia gravis can kill; though it rarely does anymore. It’s not uncommon for some patients to get their diagnosis after being hospitalized in a crisis. The rest of us live in constant fear it could happen at any time. Thinking you have it can create extreme anxiety. I ended up at the emergency room early on but they had no clue what to look at. I now go armed with documenation to protect myself.

The true commonality is that doctors don’t believe you – leading to the possibility of medical PTSD. One friend who has MS was told she couldn’t have all her symptoms at once. That’s another hold my beer statement!

I usually cope pretty well with this – until MG. I am seronegative. I had to wait 6 months for the return visit. I had difficulties communicating with the neuro’s office. By the time I got back to him, I had been obsessing for 6 months, sure he was going to fight me on it. Much to my surprise he listened, agreed I had it and we were able to plot the future steps. All that energy, all that worry, gone. All that stress – a major problem with MG. I could have made it worse. I may have made it worse. Medical PTSD is real, it’s recognized and one needs to face the facts. Every patient needs to realize how this impacts their health. Every patient may need on-going counseling. I personally can’t live without it.