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Just trying to get an answer. Undiagnosed.

Hi there. My name is Ashley and I am 27 years old. I have been sick since May 5, 2014 and have yet to come to a conclusive diagnosis.

I have had a plethora of symptoms since the first time I ended up in an urgent care almost four years ago. It started with a golf ball sized knot in my throat and numbness in my throat and face. I went to an ENT and he told me that my lingual tonsil was swollen. I was put on a massive amount of steroids and antibiotics, which did nothing. I’ve gone through four primary care doctors, I saw an endocrinologist, I stayed overnight in a hospital and was tested for a number of things including Lupus, all of which were inconclusive.

I am trying to make a long story short. Since May 5, 2014, I have gone from a size 14 to a size 2. I have intermittent numbness in my face and extremities. The most disconcerting symptom is an all-over burning sensation that usually starts in my forearms and then either travels to the tips of my fingers or stays centralized. Pain and discomfort accompany the burning, and friends of mine have told me that my skin even feels really warm. It is not a fever, as I always check for fevers when this happens. I also experience hot flashes, nausea, dizziness, double vision, difficulty swallowing, anxiety, severe headaches, pain pretty much everywhere, intermittent insomnia, trouble concentrating (which was never an issue before), among other things. I haven’t had any bloodwork or testing done since 2014. I tried to have an MRI with contrast, but I was so weak at the time that my veins kept collapsing.

My symptoms sort of plateau sometimes. However, the last few days the tingling and burning in my hands and forearms has been so bad that it’s hard to sleep. I have also been getting numbness in my throat and face and last night at dinner I found it difficult to swallow.

I’d just love an answer. It’s been almost four years.

Hi Ashley

I’m really unclear about what you want from the contributors to this forum. We can’t help you to be diagnosed with anything.

If you are asking does what you’ve experienced sound like MS, it be honest, not particularly to me. But then what you have to realise is that MS is different for nearly everyone. So what looks like MS to me might not to the next person. And we are not neurologists.

To be diagnosed with MS, a neurologist has to conduct neurological physical tests and refer you for others, in particular, MRI testing, but also possibly lumbar puncture and visual evoked potentials.

From your writing, it appears that you’re not from the U.K., so it will depend on where you are living as to how you go about referral to a neurologist.

Best of luck.

Sue