New Diagnosis,finally An Explanation?

[Mike83IRL]

**Sorry for the length of this post but it's a long story**

I Have been living with Hypotension for almost 10 years now (I am 30) ,but up until 4-5 years ago it was not so much of a problem,then one day I collapsed while lifting weights, and ever since I have had the following symptoms in order of severity....

* Difficulty breathing(no explanation,O2 levels seem okay usually)

* Low blood pressure,usually 80-90/40-50(tested and confirmed)

* Tinnitus/Neck pain/Dizziness

For years I saw dozens of doctors who either thought it was anxiety or just some kind of soft tissue injury,

then 2 years after that incident,I began trying to control my symptoms with yoga/physiotherapy, to some degree of success, until one morning while doing yoga I felt a "pull" in my neck and left shoulder,immediately my symptoms became much worse and never got better from that day,(may 2013),since that time I have also developed...

* Dysphagia (severe difficulty swallowing,comes and goes,worse after a long day,)

* Partial and progressive loss of vision in left eye( tested and confirmed)

*Partial loss of function in left shoulder(no explanation)

*Loss of range of motion in neck

For years I have tried to convince doctors that I believe the problem lies with my neck, I used to be very active in sports/martial arts and have had several neck injuries,also my symptoms seem to get worse when I try to rotate my head, or look up and down. Unfortunately I have had 3 MRI studies done which all revealed nothing,the specialists became so concerned with my progression of apparent loss of functions, that I was sent for a week of intensive neurological assessment(including biopsy) in the country's top neuro dept.(Ireland).

After a week of every kind of test imaginable,they found nothing,no explanations,and one neuro even suggested a severe psychosomatic illness (said at one point he treated a woman who had lost the use of her legs because she convinced herself she had a disease).

As you can imagine after all of this I completely lost faith in my Docs but after a few weeks I returned to researching online,which is where I found several talks by a Seattle based Rheaumatologist named Dr. Andrew J. Holman.

(vid link here,relevant info at 31.35)

Dr. Holman treats people primarily for Fibromyalgia,as far as I know,,but also has some interest in what he calls PC3, Positional Cervical Cord Compression,info link here.....

http://www.fmpartnership.org/articles/PC3_Holman.pdf

After doing some research I decided to do one more MRI on my neck, but this time I would do the "Extension " MRI specified by Dr. Hlolman's Studies, I went to my Doc. and request a private MRI,and basically went armed with study printouts and references to argue my point, luckily he agreed and ordered the MRI once I paid privately at a private clinic,(cost 200 euro), I then got a disk of the image(which MRI radiographer and my Doc both felt was within normal for someone who has played alot of sports),and decided I would try to contact Dr.Holman's office and try to consult his team via online.

On receiving the MRI image I was diagnosed as having Positional Cord Compression (PC3).

Basically to my understanding this means that while a standard MRI looks normal(some bulging), the extension MRI shows that when I move my head,the Discs in my neck compress my spinal cord and cause irritation,resulting in a range of Autonomic symptoms.

This largely goes undiscovered as these symptoms generally do not show a neurological deficit on neuro testing,Nerve conduction,biopsy, etc.etc.

To date Doc Holman has treated hundreds of people and his advice to me was mainly a specialist physio program,which his preferred PT provides info on so I can be treated here in Ireland,,to focus on rehabilitating my cervical spinal area.

Finally getting a diagnosis,and even a treatment plan has given me new hope for getting my life back,as the treatment progresses I will update this post over the weeks and months,if anyone wants further info I can also share more details if needed.

PS I also have the image of my MRI,which I would have attached but I can't figure out how! any suggestions?

*****19/08/14*********

I couldn't figure out how to post the JPEG image of my MRI,so here is a link to my dropbox if anyone wants to see it,

https://www.dropbox.com/s/3gra5zhhyz1zgej/0070516B.jpg

you can clearly see the narrowing of my cord space to 8.6 mm at one point and the lack of fluid between the disc and my spinal cord at one point c2/c3 I believe, anything below 10mm would indicate spinal abutment/irritation and require conservative treatment, I begin a special physiotherapy program soon and will keep updates posted as I progress (fingers crossed!)

[arizona girl]

Mike, Congrats on figuring it out, due to your own fortitude and not giving up. The diagnostic process is sometimes more painful and heartbreaking than the illness. Thank you for sharing your information with the forum, I remember seeing many on here who have had cervical instability over the years.

I am happy you've found a doctor that actually knew what to look for and has treatment plans that will help you recover. Will keep you in my prayers that the healing will now come.

To attach your image, when you are typing in your post window, look at the light blue shaded box above the text you are typing, on the second line there is one that looks like a "link" and on that looks like a "slide", one is for internet links the other is for images. If you hover your cursor over them you will see the description of the symbol. Click on the one you want to use and fill in the box that pops up.

Good luck and take care.

[corina]

Wow Mike, I honestly hope this will be your answer and treatment will give you back your life! I admire your perseverance!

[Mike83IRL]

Thanks Corina,Arizona girl,doees that work for an image on my PC that I want to upload? how so?

.

[arizona girl]

Yes, I'm assuming you would pull your image up on your pc and copy the address link where it is stored in your computer. I think the same way you would share or attach an image to an email you are sending.

[Mike83IRL]

ok maybe this will work....f*edit nope,doesn't seem to do it,will find out and up;load later

[sue1234]

Thanks for the post, and there are actually quite a few of us that have neck issues. I am very interested in how your progress goes. I hope to watch the video this afternoon.

[Mike83IRL]

Thanks Sue,initially the video would seem to be entirely about Fibromyalgia, but later on after 30 mins he branches out into dysautonomia, it's interesting to think that both these conditions could in some patients have a common root,.

[gjensen]

I hope that this is your answer, and your solution.

[Katybug]

Mike,

You might be interested in viewing videos on YouTube by Dr Fraser Henderson as well. He calls the issue cervico-medullary syndrome. But it sounds like basically the same phenomenon. I had surgery in June to remove one of the bulging discs and fuse the vertebrae. It hasn't corrected everything but I have gotten some relief from a couple of my symptoms.

[blueskies]

Hi Katy,

I am glad to hear the surgery helped with some symptoms.

Did they surgery help with your migraines?

Blue

[blueskies]

Hi mike,

i am glad you found an interested doctor and got a diagnosis and treatment plan.

I injured my neck when I was 20. There were no Mri machines way back then and although I had tremendous head pain following the injury no doctor even thought to X ray it. That was 38 years ago.

My pain specialist believes my neck is a major factor in migraines and vertigo like symptoms and I agree with him but nothing to do with my neck problems has shown up on an Mri.

Your post was very interesting.

Blue

[Mike83IRL]

Hey Katybug,will check Dr. Fraser out,would love to hear more about your treatment if I can PM you,

BLue, I got diagnosed with a different position MRI,but it can be done in any MRI machine,here in Ireland I got it done privately for 200 euro, I can provide details of what I had done if you are interested,Dr. Holman has said that often his patients suffer the initial injury 10 years or more before symptoms occur,Let me know if you want the info I can PM.

[Katybug]

Mike, feel free to PM me.

Blue, We don't really know what's going on with my migraines. They were better for two weeks after surgery, then came back with a vengeance. They have been better again for the last two weeks. We are weaning me off the Depakote and that's when they started to improve again. It's been strange. But I have also started to have problems with my pulse pressure being vary narrow. POTS neuro has started me on midodrine which isn't causing any side effects but I'm not feeling much better. Some bp readings are good, some are still low with low pulse pressure. But my temperature dysregulation and heat intolerance seem much better. I still have an occasional moment of a hot flash but it's mostly gone.

[blueskies]

Thanks Mike,

I've sent you a PM. Ta, for the offer to share your info.

blue

[blueskies]

Hi Katy,

Hopefully your migraines will resolve. My fingers are crossed for you.

If I could cheer out loud at the moment I would -- it was great to read about your improvement with temp. dysregulation and heat intolerance. Yay! That's good news.

blue

[Mike83IRL]

Blue PM sent,

I couldn't figure out how to post an image from my hard drive so if anyone wants to see my MRI image I have just updated my original post with a link to my dropbox, just click to see the image.

[TCP]

Wow! Well done for finding out so much with your research. You did really well. I hope you can work on this and get some good results.

At least you know now what is going on. I wonder if I could get my doctor to refer me for an MRI? I would like to know as I would like to request one as my spine isn't in good shape at all. I have cervical and lumbar degeneration, a buffalo hump, twisted pelvis. Noticeably my waist is 2 inches higher one side the the other. It would be interesting if I have any compression.

Many thanks and again well done.

[Mike83IRL]

Thanks TCP,I forwarded that info on to you also