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1 Origuy  Sun, Mar 2, 2014 11:11:23am

My housemate has EDS. Before she was diagnosed, she had back surgery that left her with arachnoiditis, an inflammation of the arachnoid membrane that protects the spinal cord. It is untreatable and progressive. She takes methadone pills to alleviate the constant pain, along with Percocet and Soma. Since she cannot work, she is on MediCal, which makes her jump through hoops to get her meds.

2 FemNaziBitch  Sun, Mar 2, 2014 11:28:02am

re: #1 Origuy

My housemate has EDS. Before she was diagnosed, she had back surgery that left her with arachnoiditis, an inflammation of the arachnoid membrane that protects the spinal cord. It is untreatable and progressive. She takes methadone pills to alleviate the constant pain, along with Percocet and Soma. Since she cannot work, she is on MediCal, which makes her jump through hoops to get her meds.

Is she connected with the EDS people on facebook? They have been a wonderful support for me.

3 FemNaziBitch  Sun, Mar 2, 2014 11:29:25am

re: #1 Origuy

My housemate has EDS. Before she was diagnosed, she had back surgery that left her with arachnoiditis, an inflammation of the arachnoid membrane that protects the spinal cord. It is untreatable and progressive. She takes methadone pills to alleviate the constant pain, along with Percocet and Soma. Since she cannot work, she is on MediCal, which makes her jump through hoops to get her meds.

I’ve also gotten tons of pain relief from the psych meds designed for such. I don’t get relief from any narcotics —well, I they sometimes help me get good sleep—which helps.

4 6monkeys  Mon, Mar 3, 2014 6:08:01am

I do not have EDS, but I do have two chronic conditions that took years to diagnose. After my youngest was born almost 5 years ago I started having overwhelming fatigue (not caused by the baby, she was a great sleeper) and that progressed to numbness and tingling in my arm and face. My family doctor was very empathetic and sent me for an MRI and to a neurologist. The first neuro looked at my MRI, said it was normal, then asked if my symptoms could be caused by anxiety. I told her I was anxious because of my symptoms, not having symptoms because of anxiety. She suggested I see a therapist. I never went back to her.

I found a neuro with a reputation for not giving up until he finds a diagnosis. At the first appointment I admitted I was worried about MS. He said he was 80% sure it was not MS. Within 3 months it became “I’m pretty sure it is not MS because you are presenting atypically” and within 3 months after that it became “I’m 80% sure it is MS.” I started treatment, did very well for about a year, and then failed my first MS medicine and started having symptoms of some sort of pain syndrome. My neuro sent me to an MS specialist who said I have some kind of secondary syndrome going on. I went into denial and refused to pursue it further. I already felt betrayed by my body and couldn’t stand the thought of having more going on.

Last year it was just too much, so I started looking for answers. I was very lucky to have mostly sympathetic doctors who did not doubt me, they just didn’t know what was wrong. I finally saw a rheumatologist who was convinced it was all just a vitamin deficiency and started me on a bunch of supplements. After a year of no improvement he wanted me to start a new, expensive, supplement and I had had enough. I went to a different rheumy for a second opinion. For the first time in my life I went into a new doctor’s office and walked out with a diagnosis: fibromyalgia.

I was started on a new medicine to help me sleep because I was not getting the deep, healing sleep. I was also started on a daily medicine for pain. It is not perfect, I’m actually in a fibro flare right now which is triggering an MS relapse, but I’m not worn down by unrelenting pain since I started the new medicine 3 months ago.

More doctors need to realize that people don’t always present typically. More doctors need to be sympathetic, too. It should not take years to get a diagnosis, and patients should not be terrified of having their diagnosis taken away (I was so scared of that when my first neuro retired and I had to find a new one).

5 FemNaziBitch  Mon, Mar 3, 2014 6:12:48am

re: #4 6monkeys

Doctors are taught: When you hear hoof beats, look for horses, not zebras —meaning I believe —use Occam’s Razor in sense.

Too many of us are finding out that we are zebras and not served well by our health care system.

On a side note, my husband, his sister and niece have MS. Looking back on their deceased relatives, one had disabling “arthritis”. I have to wonder how many people are walking around thinking they have arthritis—and either don’t go to the doctor or only see a GP once in a great while. Both mild MS and mild EDS symptoms mimic arthritis.


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