Oh have missed you all.....Happy New Year.Recap:MS but 15 months ago quad heart bypass 8 months after that stomache bled out and then almost 4 weeks ago quad completely scarred over and immediate stents to open all.Miracles.
I pulled out the copy of doc notes from the visit i personally set up on my heat to request the test "I" wanted(docs hate that)..I get a copy then and there of what transpired for my own account, addresser drawer.Tonight after all the surgery I pulled out that first visit to request the test that saved my life a few weeks back and to my shock it said.....I came in, requested what i did, told of symptoms and they ruled it as ANXIETY but would do a test to satisfy me...It is the test that saved my life i wanted to scream!Im taking it back to the same doctor and making sure on my record(which by law they have to let you see)....and having them amend my chart.I am grateful to be alive.This is a good doctor andi hate when you deal with any mental issue...it can be the first thing they look at.MS is one of those also they go to first.Any major disease they may look at first.What if i hadn't been prompted to demand a test.I know she will listen plus an added written note to my chart.One doctor said..Jackie we are "Practicing" physicians...I'm practicing on you!Im still very grateful.So ask for a copy of bloodwork etc..Its for their benefit also.Yes, we with illness get anxiety depression anger issues etc...does that mean its the cause....no.
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jackiesj
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I am so glad you stood up for your self we wouldn’t be talking right now if you didn’t.
When I told my doctor I had either MS or lime disease he told me don’t jump to conclusions. WHAT!!!’ Did he think I wanted either before I asked him about my foot drop he said I had women issues.
I demanded an MRI and I saw that Dr one more time if i didn’t have my 4 year old in tow I think I would have told him off.
I kick my self for not doing it but at the time I really didn’t know what this monster called MS was all about.
That’s why when I hear of someone having an issue with there doctor I ask them if they asked them all the questions and if they are still getting nothing done look into getting a second opinion you have nothing to loss???
Sorry I get on these rants when I hear what people go through
jackiesj . Good to hear your back and in rare form. You have a very good point. Don’t let drs have the final decision on anything when you know best. I’m fighting with my dr now about sedation on my MRIs. Hospital records show the 2 failed attempts during my hospital stay before sedating me the 3rd time. But he doesn’t want to listen but I won’t do the test because I won’t suffer thru that agony of anxiety just to show them all over again. We have to make ourselves heard even when drs don’t want to listen.
Glad you made that choice to be heard. And glad your recovering well.
Imaging place has no problem. They offered me iv sedation which just puts you in a state that you just don’t care or total sedation. Dr just wants to be hardheaded. But my heads harder. I know from experience I can’t do it and I won’t. So if he don’t listen I’m ready for a new dr I guess. If so I’ll talk to MSAA and find a true MS neuro this time.
@jackiesj Thanks so much for posting your ranting. It makes me feel less isolated! I have had the same TERRIBLE experiences with doctors the last 18 months. THEY have contributed more to my anxiety and depression than the toll of MS!!! Yes, I demand records, also. Makes me SO MAD when my primary tells me all blood work okay, then I go by and ask for printed record of CBC and there is a long column of "L"s and "H"s beside different things! With MS, we cannot afford to be "just a little low" or "just a little high." They don't get it that MS and suppressed immune system and low functioning metabolism means that I need high normal results in areas of vit D, etc., and low normal results for other items. I have researched and know what every test on CBC means, and it causes a lot of problems. Since I was officially diagnosed on 6/6/16 with RRMS, and told I have had it for 53 years (first bout of temporary blindness I remember quite well, and at the time doctor said it was anxiety---yes, everything is caused by anxiety because they are lazy, imcompetent, and don't take time to listen to all our symptoms and believe that the patient is the best source of knowledge about her bodyI Yes, I am ranting, also! My last visit with the MS Clinic director was a total comedy show. In his words, "you need to go to a pain clinic for your pain, a neuropsychiatrist for your emotional problems, and there is nothing more I can give you because you are not a candidate for any of the interferon drugs, and since you have shown allergic reactions to the 3 DMTs we have tried, there is nothing more I can do for you! And cold as an iceberg! Tells me, yes, your right brain is shrinking, not communicating with your left brain, and dementia will be the next step." Sure enough, the next Annual Checkup with primary showed I had early stage dementia. Opthamoligst found advances in macular degeneration and a retina disease that has no cure or meds and leads to blindness, and my lesions have progressed greatly in the last 6 years. "They" have sent me to 18 different doctors/specialists in the last 18 months, and I only have more "comorbidities" diagnosed to add to my long list! I was on 21 medications. I got disgusted with all of them; slowly quit taking meds, down to only 5, 1 for sleep, 1 for depression (finally found a behaviour counselor that listens and believes me!), 1 for anxiety, 1 for the MTHFR mutation the DNA test showed (reason for not metabollizing anything!) 1 for muscle relaxer for muscle spasms. I now use essential oils for my pain areas, along with ice packets, TENS unit, and limited physical therapy every other day (found a very understanding PT that believes I can do more than limited stretches!). My behaviour counselor willing to see me only every 3 months, PT will follow my abilities and when I reach 2 reps every day, I will see him again for a few more exercises. All those doctors and MRIs, and tests, etc., etc., gas to drive to all of them 40 miles away has drained our savings on 2 SS checks. I am FINISHED with neurologists, pain clinics, etc.,e tc., etc! Why continue with MRIs to see if active lesions increased - there is nothing they can do for me! So, diet, PT, meditation, prayer, limited activity, lots of rest when needed no matter WHAT family and friends think I should do, accepting my emotional roller coaster even if family and friends don't, and trusting my wonderful best Friend, Jesus, and knowing, believing God is in control of my life, not the practicing medical field with all their cognitive decreasing drugs! Even my internet was down for a week, caused emotional problems big time, had to find a new one, insurance problems, phone problems, marital problems, family problems - yep, definitely a RED SEA experience. "Trust and obey, for there's no other way, to be happy in Jesus, but to trust and obey." Love that song. The other day I made a list of every comorbidity I have been diagnosed with and the list was 19 comorbidities!!! (Don't you just love that word? It's so MORBID!! I am laughing my head off from all their ridiculous gloom and doom predictions and wanting me to rely on 20 medications!) Yes, I am laughing at this point. No one in my life believes it all - one person reacted with "you are kidding, right? you did make up some of those words, right? LMHO! I never heard of the names until some doctor put it on his report. And I just love those patient portals! I can print off my records straight from them, sometimes before the doctors talk to me next week, next month. But no more 2-3 weekly appts - not seeing another doctor until March!! God has given me a mind left enough to take control of my own body, and deal with the future one day at a time. God bless all of you fellow MS pilgrims walking through this life! Have a better, peaceful 2018!!
agapepilgrim and jackiesj well I appauld both of you, well done. Your faith as served you well. I have never taken any medication for ms, as the doctor and neurologist told me from the very beginning, there was nothing they could do. So, welcome to the real world. I don't have MRI's as it's always worse news after each one, so I just carry on. I don't need to be told that I am getting worse, that's an every day reality. I thank the Lord for finding me this forum, because it's people like yourselves and your testimonies that give me strength to keep going. Thank you and God bless, blessings Jimeka 🤗 🌈 🦋 🙏 🍫
jimeka That is an awesome testimony of faith. You have completely put your trust into the only one that can really change the direction of this disease.
Like you I also thank the lord for this forum. All you have helped me thru some times when I just didn’t know which way to turn. Hearing others tell how they got thru their hard times is encouraging and Uplifting to me.
My last MRIs showed only one new lesion but the symptoms keep coming and old ones getting worse so what would happen without dmts or MRIs. Whatever God has planned for us.
@agapepilgrim. Preach on sister. I hear you loud and clear. There are a lot of good doctors out there but also a lot with their own belief that they know everything and we lowly mortals know nothing. I’m dealing with one now about my MRIs. He wants me to have all 3 with 1 Ativan and a Benadryl. This ain’t my first rodeo and I’m not easy prey for his mightier than thou orders. Without a lot more Ativans or sedation it ain’t happening. I might have to put up with ms but I don’t have to be put thru that kind of torture for something I know I can’t do. I’m extremely claustrophobic have had back surgery neck surgery with enough metal in my body to set off metal detectors and live in constant pain so no I’m not gonna lie in that stinking tube for 2 plus hrs without adequate medication. If he don’t like that and take care of the problem I’m tired of him not treating the last 2 relapses or any I’ve had to be honest it’s time to move on anyhow I think. It’s like steroids are taboo to him. Not asking for a lifetime prescription but when I’m down at the bottom help me get back up where I can stand by myself.
But God is good and he will lift me up on wings of eagles. Without Jesus what would I do. One of my most inspirational songs is “I Can’t Even Walk Without You Holding My Hand”. That song brings tears to my eyes and hope in my heart every time I hear it. Cause with the last week at my house without him I truly couldn’t have walked without him holding my hand.
Father I pray for everyone going thru this dreadful disease called MS and all other chronic illnesses. I pray that in your infinite wisdom you lead and guide these dr and scientist hands and minds in tge search for cures for these diseases. I pray that if and when these cures are found that the almighty dollar doesn’t interfere with them being released to your children that need them. In your word it tells us that by the stripes that Jesus your only son wore we were healed. Not would be healed but we were healed if only we believe. If we could only have enough faith healing is there. I know that I will be healed if not in this life in my new life in heaven I’ll have a new body free from suffering pain or disease. I’ll have the greatest doctor that ever was. Dr Jesus the great physician.Thank you father.
jackiesj sorry to hear about your doctors, but glad to hear you are doing better 👍🤗 I know what you mean about taking control and getting info to review for your own knowledge. I pray for you to continue to improve 🙏👍😉⛄️ Ken
jackiesj agapepilgrim and all of you - Praise God for your faith in the Great Physician! What horrendous ordeals you speak of having gone through! It is so very sad! Let's all pray for each of our MS bloggers to have much better days in this new year. I'm so happy to hear of each of you standing up for your rights, and getting reports or tests when needed. The "practicing" part of medicine is very true. Sometimes our doctors need help in seeing what part of "practicing" they don't have down yet. Right now I'm trying to get a copy of my latest MRI Radiology report, since I won't be seeing my doctor until 1/11/18. I have had a continuous flare for about 2 months now. It's mostly cognitive, dizziness and leg weakness, but I think it will show up on the MRI. Have had the prednisone and IV-solumedrol and do not feel any improvement.
There is another very old hymn that comes to my mind this morning. My father, who died when I was 3, sent a page from a hymnbook to his mother, before his death. It was "Tis So Sweet To Trust in Jesus." Also, another current song that blesses me each time I hear it is Joseph Habedank singing "Hear He Comes", also "If You Knew Him". His richest blessings to you all in this New Year!
jackiesj So glad you stood up for yourself!! I love the new system that they have here (MyChart) that anytime you have a test done, you get an alert that when the results are in you can see what they are and don't have to wait to be notified by your doctor to what they are! Then you can print them for your record!!
It just seems like the whole health care system is in disarray. There is no personalized medicine for individuals anymore. It's a one size fits all attitude. I'm so disorganized I'm going to have to get my doodoo together for the paper work trail. When I had my first symptom, high heat on black top and I needed two people to drape my arms over, to get to air conditioning (huge stress I had kicked my police officer fiancé out of my home for cheating on me plus closing all the accounts of a business we had just started) and working 50-60 hours a week, and single mom for a 13 year old young man. I told my primary care doctor, after doing some research, and a couple of people around me had been diagnosed, that I had MS. He told me to see a psychiatrist. We have to do this ourselves I guess. Thanks for the reminder!
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