Diagnosis. And still I Question...

[AllHis]

So years and years of "on and "off" symptoms, physical therapy, and doctor appointments. Years of testing, blood work, and trial prescriptions. All the "normal" labels: IBS, fibromyalgia, menopause and now Anxiety Disorder. Yes, if my tests are normal, it must be in my head. Self induced TMJ disk displacement - wow! Thank you, I'll go home now...

Truly. I am never the same patient twice. I hate that pain scale of 1-10. OK, it's a 2 right now, my objective is to keep it from going higher! So you don't LOOK in poor health, your pain level is a 2...

I need a little advice from the pros!

I was just diagnosed with cervical dystonia by a neurologist who wants to help with botox. I need to decide. Is there a group I could call for advice or questions over the phone? Or just on line?

Who wants to help me?

Here's what's going on in my head.

I CAN SEE THE DIAGNOSIS looking back:

I was forced to gave up a 26 year career of sewing custom window treatments professionally because " if I assumed that position" of standing at the sewing table, my right shoulder would become really tight. I was calling it a gremlin. He attached and wouldn't let go.

No lie, I was getting PT for my low back, and on the last day of treatment, my neck hurt so badly I was crying out in pain. I thought I had hurt it from a ball exercises to strengthen my core.

There is nerve on the side of my right foot that went crazy when I crossed my feet. I was treated with cortisone and had to unlearn that habit. I was even doing it in my sleep.

My hearing and eye sight are being affected because the muscles in my neck are so tight.

I have been thinking heart problem for a long time, because of this "pounding chest" and "vibrations" I feel in my chest and throat. Often with an episode of sweating first.

Carpal tunnel release 4 years ago.

And the neurologist thinks TMJ not related, but...

This is how I was telling the GI doc about a side effect of a Rx last year. When I lay flat in bed, I had to bite down really hard on my mouth guard to swallow. It was like I couldn't finish the "swallow." I woke so often with this, I was getting chest pains. (Never told anything but Anxiety Disorder.)

Being treated for Anxiety reminded me of Grandpa. He first had open heart surgery and then came depression. He couldn't stop crying. So when antidepressants were introduced, Parkinson's Syndrome appeared. I was helping care for my grandparents and would take him to the doctor appointments. It took doctors some time to balance antidepressants with Parkinson's meds. To us, it seemed that antidepressants made Parkinson's worse. ( Being on Viibryd currently, I just remembered all this.)

And could my pelvic floor disorder be part of this?

By body simply does not allow me to be at rest. Nerves are on high alert. I kept thinking heart. Maybe they are tremors. Don't know what a tremor is...

NOT CONVINCED OF DIAGNOSIS:

In, truth, it could still be an Anxiety Disorder. Many, many doctors are convinced.

And I keep thing I am laking a vitamin or nutrient. Something simple, B12, D, magnesium... Yet, when I tried supplementing, and things got worse...WELL IT HAS TO BE FATTY LIVER!

I WOULD LOVE SOME HELP. I have a 19th month granddaughter who is holding her right shoulder high and twisting her right hand oddly. I want to help her, but I'm not going to go there until I speak with a professional first. Her mother is not receptive to me throwing out my latest internet diagnosis! LOL

[talynn]

Hi there. I can relate to many of your ¨symptoms¨ and the frustration of trying to sort through where the actual issue is. And the always fun diagnosis of ¨anxiety¨ as a doctor´s all encompassing assessment.

Curious to know how you´re doing currently since its been a couple months. Did you move forward with the injections? Does your diagnosing neuro specialize in movement disorders?

Hang in there!

-T

[AllHis in reply to talynn]

Thank you for reaching out to me. I have treated my "anxiety" and am currently on no prescriptions but baby aspirin. I sleep much better.

I did get a Botox treatment. The neurologist is a headache specialist and is very conservative. I don't know if it is the Botox, acupuncture, or just the cycle of things, but my neck has calmed down quite a bit. Still very tight and restricted, but not that crazy shooting pain where I was afraid to move the wrong way.

Well, you won't believe my crazy life! I currently have an appointment with a vascular specialist. My carotid arteries are 50- 60% blocked. Now, how did that happen?! And not your normal plaque build up. Oh no...this is muscle tissue thickening? the arteries themselves are narrowing. This is why the Baby aspirin. To get the blood flowing.

So what came first? Dystonia or the fibromuscular dysphasia?

( Or seriously. Some kind of nutritional deficiency?)

I do like acupuncture. I find it relaxing. I recently gave up on physical therapy. I just don't see the point of manipulating my neck when my carotid arteries are "kinking up."

I just know TMJ is a clue or symptom of something bigger. The oral surgeon is next month too.

Know what would really help? A doctor to put all the pieces together. Here's hoping someone figures this all out soon. I'm a goofy person, I guess. I truly don't care what the diagnosis is. I do care that each body part requires a different doctor! ENOUGH ALREADY!

My current solution is simple. I've been looking into clinical trials. I will see a movement specialist in January for an evaluation and consideration for a cervical Dystonia observational study. ( followed with another round of Botox.)

I sure hope you and your Mom get the help you need. Hugs.

[AllHis in reply to AllHis]

I'm curious. Who treats your nine year old?

[talynn in reply to AllHis]

Wow! that does sound like a very complex situation and I can relate to the feeling of chasing the issue for sure. I do wonder at times if the malfunctions in the basal ganglia and thalamus may somehow contribute to the overall feeling of the nerves being on high alert because i do know exactly what you are talking about. Or maybe this stems from the anxiety that occurs from dealing with the issue.

Ugh so much to say here. It sounds like you are making some progress and finding some treatments that may be helpful?? The artery issue is new to me! I haven´t had time yet but am looking forward to diving down the rabbit hole of research to see what else I can find on this and if there is any possible link to your neck issues and what that might be. I am also curious.. In my business, I run a class IV laser used to increase cell function and circulation and also reduce inflammation. Its AMAZING for a wide variety of issues. I know using it over veins and arteries is not recommended but there is always new and up and coming research on the benefits of laser in different areas. I will look into this for the fibromuscular dysphasia and see if I can find anything.

I am headed to bed but to answer your question - my daughter saw a wonderful pediatric neurologist who confirmed her diagnosis of essential tremor. She gave us the options of trying propranalol and doing some occupational therapy. We have done neither of those but I have had her on a high grade CBD oil for a little over a month and she plays piano and cello which are great for her fine motor skills. I do notice a slight improvement so far which is promising. Just increased her dose a bit and am currently researching the use of CBG which apparently may be more useful in treating tremor/nerve issues.

Thanks for getting back to me and I wish you the best in your journey and look forward to chatting more!

[Grvarley]

please look at your medications. My husband developed it after taking requip. I beliee mediation can cause it. Please read my post.