...Risking My Health...
Yesterday I finally admitted to a symptom that I have been ignoring for over 6 months. In a slip of the tongue to my best friend I had suddenly let the cat out of the bag and there was no way of smuggling the damned thing back in!! I could see the concern on her face as she asked why I hadn't been to the Dr and I felt surprised that I had to fight back the tears as I admitted to her (and myself) that I was scared.....scared of the possibilities but mostly scared that, yet again, it would be nothing and that with all of my other mounting symptoms, I would be labelled as a hypochondriac. I feel like all I have done this year is go from Dr to Dr and I am almost embarrassed to phone them for another problem! (On top of my many Neuro visits to Neuro#1 and a second opinion to Neuro#2, MRI, Chest X-ray and Bloods trying to find the answer for my symptoms, I have also had 2 abnormal smears and have been told that I have the high risk HPV virus linked to cervical cancer. My consultant said that my body could fight the virus but is clearly run down with the possible MG - or whatever else is going on! I am awaiting a Colposcopy to see if the changes are pre-cancerous in a couple of weeks as my Gynecologist is on holiday now!)
Sorry! Back to yesterday!! My friend was really sad, she said it makes her mad how one Dr has made me so scared of all the rest and so fearful that no one will believe what I tell them - and I had to admit that she was right. I am so busy worrying about what the Dr's think of me I am willing to risk my health just to avoid the possibility that they won't believe me! I have 2 young children - this is not right. I need to sort this out in my own head, it upsets me to think about it and now I see it, I could cry at how Neuro#1 made me feel and how I didn't realize that it had affected me in such a way.
The symptom is a tenderness which is quite painful between my breasts, right where the underwire of my bra sits. I had dismissed it as hormonal or my bra's digging in but after changing my bras and realizing that it persisted when the monthly hormonal subsided that theory was out! It was painful when Neuro#1 sent me for a chest X-ray and I remember thinking that anything nasty would show - and thankfully it didn't!!-so I just ignored it.....and the fact that I can't lie on my front or let my girls rest their heads on my chest!
My GP has diagnosed "Costochondritis" which is a relief as it means no further testing is required (yay!) I was dreading ANOTHER consultant appointment!! She has given me Ibuprofen Gel and said to go back if it doesn't settle as there are medicines I could try....but I don't want anything that could affect my Nerve/Muscle tests next month!! I am so happy and relieved to have a diagnosis (and nothing nasty!)
I have done a little research into Costochondritis and it looks as though it is an auto-immune disease...or associated with auto-immune diseases (?) and I have read many people here discussing how auto immune diseases rarely come alone (!)....so does this strengthen the case for me having MG?? I suppose time will tell.....
Sorry! Back to yesterday!! My friend was really sad, she said it makes her mad how one Dr has made me so scared of all the rest and so fearful that no one will believe what I tell them - and I had to admit that she was right. I am so busy worrying about what the Dr's think of me I am willing to risk my health just to avoid the possibility that they won't believe me! I have 2 young children - this is not right. I need to sort this out in my own head, it upsets me to think about it and now I see it, I could cry at how Neuro#1 made me feel and how I didn't realize that it had affected me in such a way.
The symptom is a tenderness which is quite painful between my breasts, right where the underwire of my bra sits. I had dismissed it as hormonal or my bra's digging in but after changing my bras and realizing that it persisted when the monthly hormonal subsided that theory was out! It was painful when Neuro#1 sent me for a chest X-ray and I remember thinking that anything nasty would show - and thankfully it didn't!!-so I just ignored it.....and the fact that I can't lie on my front or let my girls rest their heads on my chest!
My GP has diagnosed "Costochondritis" which is a relief as it means no further testing is required (yay!) I was dreading ANOTHER consultant appointment!! She has given me Ibuprofen Gel and said to go back if it doesn't settle as there are medicines I could try....but I don't want anything that could affect my Nerve/Muscle tests next month!! I am so happy and relieved to have a diagnosis (and nothing nasty!)
I have done a little research into Costochondritis and it looks as though it is an auto-immune disease...or associated with auto-immune diseases (?) and I have read many people here discussing how auto immune diseases rarely come alone (!)....so does this strengthen the case for me having MG?? I suppose time will tell.....
Replies
Don\'t even get me started on doctors blaming unknowns on anxiety and depression, etc. I want to write a book called \"All in your head\" that details the way disease has been blamed on demons and psychology until undeying disease mechanism is understood. I get SO ANGRY for every person who has been mistreated by the arrogance within the medical establishment
I sure wish I could make up reasons for things I cannot diagnose on the network and have my fabrications be so. Giant UGH!
Hope you are hanging in there. It is difficult, and I wish you a speedy diagnostic process.
I am sorry that you have so many unresolved health issues. I understand how you feel about going to the doc. That\'s the way I felt until I found my GP. I knew I has fibromyalgia but had so many docs roll their eyes when the word was mentioned that I never brought it up to another doc. My GP was the one who sent me to a neuro to get treatment for MG. it\'s hard to trust again, but u can decide not go go back, it\'s your choice. I hope you find answers soon. Big hug!
Elinor and Unsure,
I share your impatience with neuros too. The Prof wanted explanation of my breathlessness whether it was cardiac failure, lung disease or resptiratory
problems---well saw cardiologist - no problems -pulmonologist -no lung disease..he says for the oxygen desaturation to be abnormal maybe the equipment was faulty!!!!!!!! Hm !!! he also dais this doesn\'t happen with myasthenics.Anyhow I had 6 more tests the same day with an exercise and AB test for next month, The girl doing the test commented that there was a remarkable improvement from the last tests and when I got home I thought about it of course there was, I took Mestinon whereas the last time I was having an SFEMG after so I abstained.
The Prof recommended a book \"Overcoming Functional Neurological Symptoms\' which I have ordered and will read.
Lorraine
Thank you all for your messages - sorry I am flitting in and out here at the moment as not feeling so great and trying to distract myself as much as possible!! Elinora and Barbel - you are so good to me, I know you have both had a rough time and I thank you for your support.
Lorraine - I read your journal entry about your last Dr visit and wanted to comment but I decided not to as I completely understand that you have probably lost the will (and energy) to fight this and that you have come to the point where you feel you have to consider accepting the \"Functional Disorder\" diagnosis. Neuro#1 gave me this same diagnosis (but 9yrs ago he said I had Chronic Fatigue with Psychological Factors\" for the same set of symptoms?) I too feel that at some point I have to accept what the professionals tell me and I envy and admire those who have fought through numerous Neuros as I just don\'t think I could do it?
I have agreed with myself that I have to accept the results of this test even if they are negative and disprove MG....but deep down I feel that I do have MG and one day there will be a test that will confirm it - that time just may not be right now. Do you feel deep down that the functional disorder explains your symptoms? Neuro#1 gave me a website to look at - http://www.neurosymptoms.org/# what struck me was that MG is one of the conditions confused with Functional Disorder and that gave me the push to get a second opinion....but I may have to accept that this is my diagnosis. I will take a look at the book you mention....but really how can they blame faulty equipment on your results and if they truly believed it was a false reading surely they should have tested you on equipment that they were certain was working correctly?!?!?!?!?! How can Functional problems produce a reading like that and now you know Mestinon probably helped during the tests surely that counts towards your MG case? I hope they are letting you continue with the Mestinon as it clearly helps you - I wish you the best of luck Lorraine, let me know how you get on if you can.
Eve.x
I don\'t have your problem with difficult doctors but at times I do struggle with whether or not to go in with a problem or not. I think it takes a while to get comfortable with this disease. MG being a snowflake disease what is normal for one person isn\'t for another. It is all weird. Mary