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Anxiety over seeing neurologist

Jun 12, 2019 1:28 AM

At this point I’m not sure if I want them to find something or not, but at the same time I am desperate for answers.

The situation: left leg collapses under me, foot curles under me, it “feels a bit off” and weird. I have generalised myofascial pain in every part of my body but the left side is worse, including in my shoulders. I cannot walk more than a handful of steps unassisted, am using a walker.
Current diagnoses and suspicions my other specialists have given:
- (mild) hypothyroidism (Hashimoto’s)
- Ehlers Danlos Syndrome
- fibromyalgia
- rheumatic disease (blood looks fine, that’s not reliable though)

And of course my suspicions and things I’d like to see excluded:
- lyme disease
- pinched nerve in spine related to scoliosis

I’m 22 y.o., my university is not really accessible (there’s no lift to library and no accessible bathroom) and my pain and leg instability is getting worse every day. I am not sure what I can do anymore aside from stubbornly wait and harass doctors.

I’ve gone vegetarian, I’ve tried to cut back sugar and increase fish, I take vit D, thyroid med, diclofenac (which is reducing me from a constant 7 to a 5) and I’m struggling to study and do everything I must.

I’m nervous about tomorrow. My health went from “something’s wrong but tolerable” to “I can’t walk” in 2 months.

Jun 12, 2019 1:49 AM

Might I suggest to make sure you are gluten free. Gluten is known for spinal and joint inflammation. Maybe look for school that is online. Also get copies of all your medical reports, lab work, and images. If you already have images ask the doc to explain what you are looking at. After having numerous done, I have gotten pretty good at reading my own. It is so reassuring to be able to have a visual.

Jun 12, 2019 9:43 AM

Joshie, I understand your anxiety, I've been there. They were concerned I had MS, but it's been my cervical disc causing tremors & lumbar discs causing foot drop & toes drawing up. As zetarlov suggested, an online college might be easier for you. But your college should be reported for lack of handicap accessibility to areas. Try talking to the college first, but if that's a deadend, research & contact the appropriate agency where you live. I learned I have gluten sensitivity and have cut way back on foods due to it. I've also cut my sugar intake due to my hubby's diabetes; both dietary changes has improved my inflammation levels in my blood work. Try deep slow breathing to relax during any tests. Once you have answers you will at least know what you are dealing with. Hugs love and prayers you get answers quickly and get treatment to help reduce symptoms! 🙂❤🙏🌼

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