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My daughter, 17, has been diagnosed with RND ( Reflex Neurovascular Dystropy – amplified Pain symdrom) in August of last year. That was “something” to explain all her mystery symptoms she has been experiencing since last january. After doing a lot of reading and researching I am just not sure that this is what it is.
It all started with numbness in her feet, really bad headaches and random rashes and terrible pain (mostly in her joints, the knees are the worst) Stomach pains (ended up in the ER 2 weeks ago with cramping and throwing up)
Most time she is functioning through the pain. She used to be really social, now she spends a lot of time in her room, sometimes in the dark (sensitive to light and too much noise – not all the time, but quite a bit)
sometimes she feels really sick after exercising – in RND they are told to push through the pain and move
The only medication she is on is Amitryptelyn
there are other symptoms too: Days of extreme anxiety, smellling things that are not there and a hightend sense of smell, thightness in her chest at times, sudden facial flushingI have read in previous posts that there might be a link to Autism? We do have a few cases in our family….
Going to the Rheumatologist next month – are there any test I should ask for? Any doctors/Neurologist/Rheumatologist in the Dallas area that anybody can recommend?
Any feedback or input is greatly appreciated.
I’m so sorry to hear about what you and your daughter are going through. I DO love a mystery diagnosis, however! 😉 Are you familiar with The Driscoll Theory? Does your daughter have any symptoms of high intracranial pressure (also common in the autism spectrum)? Did she ever try antihistamines (something like Zyrtec/Zantac? It’s not an end-all-be-all, but it gives us clues! Please consider filling out a Symptoms Checklist as found under Articles and Handouts! It will give me an idea or two, I betcha’! I DO have a good rheumy! Dr. Iqbal in Dallas.(214) 540-0700. Please tell him I recommended you (although he likely won’t remember me — you just never know!). He worked at UTSouthwestern, and was very thorough. Will you keep us posted? Welcome to the family, BTW! 😉
I will try the zyrtec/Zantac – guess that would have to do with mastcells, right? How much should she take?
Will fill out the symptoms checklist and try and get it to you today as well – this is not the kind of mystery I like and any help/hint/suggestion is very very welcome!how do I get the symptoms check list back to you?
Thanks!
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