Jump to content

Mike83IRL

Members
  • Posts

    71
  • Joined

  • Last visited

Everything posted by Mike83IRL

  1. thanks all, seems to be quite a common problem so,well my myelopathy therapy for cervical compression starts in a few weeks so hopefully that will provide something positive.
  2. Yeah it can be unpleasant, doc told me today there is a medication but the main side effect is that it can lower BP!
  3. Hey guys, just wondering if anyone has had any experience of swallowing problems,associated or not with POTS/HYPO?,had a special kind of scope thingy put down my throat last month(sorry to get so technical),at my GP's request,they say I have muscle spasms in swallowing muscles,possibly due my cervical cord compression, anyone dealt with this?
  4. I think I started that thread on Android,here's some games I believe can be played on either, Clash of Clans- is base building strategy,very addictive,very popular,and has very social clans in chat function,best of all,can all be played with only one finger! Badlands-not sure how to describe it but if you like Valley of monuments it might be for you. Quizup-play puzzles with people all over the world also I know its not a game,but the "Imgur" app always keeps me entertained. also I love "Libravox",it's fantastic for a free service.enjoy!
  5. This has also been my main symptom for 4.5 years now,I have never had an answer until recently,I have yet to begin treatment so I don't know if they got it right yet but here's hoping!,..anyway it's a verrry long story do here's to link to my post last week.... http://forums.dinet.org/index.php?/topic/25884-new-diagnosisfinally-an-explanation/
  6. Thanks TCP,I forwarded that info on to you also
  7. 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.
  8. 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.
  9. 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,.
  10. ok maybe this will work....f*edit nope,doesn't seem to do it,will find out and up;load later
  11. Thanks Corina,Arizona girl,doees that work for an image on my PC that I want to upload? how so? .
  12. **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!)
  13. I take ot everyday.find it usefull.not sure if i can find a link for you but first read about in a study comparative to midodrine.
  14. Yeah alot of docs seem fixated on the idea that with BP lower is ALWAYS beneficial,..not true for us!
  15. Went Paleo 6 months ago and switched to Wahls(more detailed) 3 months,definitly some improvements in my neurological symptoms,unfortunatly hypotension is still an issue but will def be sticking with Wahl's for the long,if only just to be able to think straight!!
  16. My doc wants me to start Midodrine in a few weeks,once neuro finishes some more tests....just being curious, but have any of you tried alternative drugs? ,florinef etc..
  17. Wow.i hit 85/45 while standing today.chest pain makes it extra unsettling
  18. Just curious,getting some low numbers agaon today,what's the lowest systolic/diastolic anyone here has gone while still being concious?
  19. Has anyone tried the Buteyko Method in relationto POTS/OH symptoms?could by an interesting way to experiment safely at home with thus Oxygen/CO2 theory.
  20. http://m.youtube.com/watch?v=KLjgBLwH3Wc
  21. "Minding My Mitochondria" is her first book,which is out of print now,hence scalpers are selling it for such money...her new book "The Wahls' Protocol" is the more updated version of the protocol shevhas followed for the last ten years andvis also the same she is using in clinical trials (with very promising results). Here is her TedxTalk from a few years ago..
  22. @CHAOS ,really setting off some bells here,earlier today i orderes Dr. Teryy Wahls' new book,she is a director of internal medicine at the Iowa V.A. hospital that was diagnosed 3 times at the Cleveland clinic with secondary progressive MS(reputedly one of the world's best Neurology centres). With a diagnosis of a fatal disease in it's final stages she used functional medicine and dietary research to get of of her wheelchair and back to working full time.Her first book is called "Minding My Mitochondria"
  23. "Looks like somebody's got a case of the mondays" :-)
  24. http://supernaturalfansonline.com/wp-content/uploads/2013/10/sfonews0435.jpg
×
×
  • Create New...