Frustrated

By lindaxlb

2 min read

I am 60 years old in a couple of days. My quest for medical help began in 33 years ago.

I saw my doctor in 2012 with pins and needles below my knees. Serious foggy brain tortured me from teaching properly. An MRI showed multiple lesions. Both my doctor and I agreed it was MS. I have three cousins with MS but two have passed. Just last year two of my sisters’ daughters were diagnosed with MS.

In 2013, my doctor sent me to a neurologist, and he demanded I put away my prepared notes. Without looking at my MRI he diagnosed me with painless migraines. Whaaaat? My doctor was flabbergasted! So I saw another and another and both said they agree with the first neurologist.

All my problems started at 26. Super exhaustion, serious bladder and bowel problems (both of which I had surgery for), depression and so on. I saw many doctors. My list of diagnosis span from fibromyalgia to degenerative bone disease. Since 2012, I broke my left ankle, my right wrist 2014, my left wrist 2015, my right ankle 2016 followed with back surgery fusions. I’ve seen specialists for everything and the latest was so antagonistic that I decided to write him a letter.

I started with: I have as many letters behind my name as you do. I’m very well educated and not stupid. I told him to never text a friend to make plans for dinner and be distracted with the phone during an appointment with a patient. Never assume your patient doesn’t know the difference between a psychiatrist and psychologist especially when I’ve been seeing a psychiatrist for 10 years! He compared me to his other patients and said my bowel, bladder, exhaustion, foggy brain, difficulty speaking and imbalance have nothing to do with MS. I told him I’ve done loads of research but he told me that I probably didn’t research the capable sites on MS. I asked him if the MS society was a good enough resource. I left. My doctor said she sent him 27 pages of my history and he didn’t read one. She was disappointed. Just after that I ended up in hospital with double pneumonia for two weeks. My doctor noticed I’m dragging my right foot.

Here’s the thing:

I HAVE NO PROPER
DIAGNOSIS AS OF YET!

If I do have MS then I’m being denied treatment! It’s just a waiting game. I’m not sure I care anymore.

FRUSTRATED IN CALGARY

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harleydog1 Member
Don’t give up. Go to another Dr. that’s what I did and he’s great. Maybe around 6 Year’s.good luck
jot32 Member
So sorry to hear of your ongoing health issues. Its outrageous that you have received this kind of treatment. My diagnosis was final in 1997 after spinal tap and MRI. Prior to, it was chasing diagnosis like "depression from mid life", Lymes disease, on and on. Doctors were very one note and dismissive until I saw neologist at a well known hospital. They had referrals for docs in my area which have been, for the most part, excellent. Recently referred to an Occupational Therapist specializing in MS, amazing results. I recommend contacting the MS society who will have a list of Neurologist in your area the start some meds and physical therapy. You should not continue to suffer without proper medical attention!
1. lindaxlb Member
 Apparently spinal taps are no longer needed, besides I could get infection at the needle site! The excuses are far reaching. I can’t take the rejection any more.
Erin Rush Community Admin
Wow, lindaxlb! You have dealt with some pretty unprofessional medical staff! I am so very sorry you have been fighting for so long for a proper diagnosis. I don't blame you for being frustrated. While it's hard and draining, I do hope you keep fighting to find a physician that listens to you and works with you to get a diagnosis and proper treatment! Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
1. lindaxlb Member
 Thank you for your kind words. Year six, four mri, bright flare discovery, signs of demyelination but now I’m told I’m too old at 60 for ms. Discouraged and depressed beyond belief.
jlnewport Member
How awful to be treated like this! When I hear stories like this I just don't understand what doctors know about MS. To be dismissed so many times has to be maddening but please don't give up. There has to be someone out there that has the answers and maybe just a bit of compassion.
f5hwo4 Member
I am sorry you haven't found the right doctor yet. My GP finally sent me to a neuro after he had thought I had hurt my elbow. I had asked him for a referral for at least 10 years to get tested for MS. He kept saying I didn't have it. When I got to the neuro office and told him about past symptoms and my aunts with MS, he immediately set me up for MS tests. He went ahead and tested my elbow, it turned out to be part of a relapse. Potter
CommunityMember9f00e0 Member
I was referred to St. Michael's MS Clinic in Toronto, and the expertise is really fabulous. (I travel from a more norther centre) I wonder if the MS Society can find something comprable on the west coast? Calgary is a big city! How frustrating for you.
muse77 Member
Good for you, reading that "doc" the riot act! I had to do the same thing. But I must have been to 6 or 7 doctors before I was finally diagnosed with MS. It was suspected in 1989, I was diagnosed in 2006, and my neuro said it wouldn't have helped to be diagnosed in 1989 as there was no treatment then. And I'd have been freaked out, but knowing the truth is better any day than being told that you're "just depressed." JUST DEPRESSED? I had docs angry, frustrated, and actually saying that they didn't know a thing about MS. Okay, so my office visit is free, right?? Contact the many MS organizations around your area to get a recommendation for the best neuro for MS there. And hang in there, believe me: You are NOT alone.
jtrgjh Member
OMG. You're story is much like mine. Except that they actually DX's me as soon as my first exacerbation. I also have the same problems you do. My bones are horrible, and my breaks are very similar to yours. Wrist, Shoulder, pelvic bone, femur, ankle. I cannot believe there is a Medical Dr. who does not recognize what you're symptoms are! Praying you find the right Dr. If not where you live, find an MS specialist! Good luck to you.
Member
You are probably sick of reading about new drugs, miracle cures etc. but please forgive me if I join this queue. It's only because I spotted your age and the length of time that you have had the condition, very similar to me. It started for me in December 1983 on my Birthday. This year, I will have had MS for 34 years. I live in Peniscola, Spain with my wife Nely. I've been here for 12 years and for 2 years have been bedridden because of MS. It would seem everything is gloom and doom, but this is not the case. I have used my engineering knowhow to develop a technique which bit by bit is curing the whole saga. It involves a very simple use of a permenant magnet DC 3V electric motor used to attract magnetite and guide it to the kidneys for chelation. It works because with the same device you can hear the magnetite in a bottle of reserved urine as a loud wah-wah sound when you rock the two together. I'm making it sound very simple but there is much to communicate for effectiveness. It works because symptoms of MS are fading. You have to get in the same mindset as myself that MS is not chemical at all, it is physical. It is due to iron overload which you may have been born with. The body has allowed this to oxidise, some as magnetite, and intends for this to be chelated but due to narrow veins this has not happened. It has been stored in various sites but particularly in your shoulders. Some has been deposited in the brain as magnetosomes. Tiny electromagnetic fields at 50Hz have caused these to vibrate like the spike of a pneumatic road drill. The susceptibility to myelin damage depends on the angle subtended between the magnetosomes and the myelin. This varies from zero at the equator and 90 degrees at either pole. Hence friction is greater the further from the equator. This is rather complex to explain but fits with published statistics. Read my submissions on thisisms. What I have not published previously, is the reason that women have a higher risk than men. This is because of the use of hand held electric hairdryers. They DO NOT cause de myelination. They are far too powerful, but held near the shoulders, cause magnetite to re-enter the bloodstream, some of which will assemble as magnetosomes in the brain.......
caninemom6142 Member
The way you've been treated is disgraceful! I went through a terrible time many years ago when I first got sick and knew something was very wrong. I'm not the sort of person to sit around and wait to be referred or sent to a doctor, I just make an appointment and go! If that doctor seems like an idiot, and sorry to say many of them do, I look for someone else. I went to seven neurologists before getting diagnosed with MS. SEVEN! One said, you're probably working too much, not getting enough sleep. Another said, migraines. Another said, the pain in your arms and legs, most likely due to too much exercise. And one of them looked at me over his glasses from across his desk, like a teacher reprimanding a student in grammar school and said, I think you have a psychological problem and should seek out a psychiatrist! I wanted to throw something at him! I walked out of there feeling almost defeated, almost....I'm not the type of person who gives up. The following week a new girl started in our office. I was feeling particularly bad that day and she sat down in the coffee area with me and told me a little story about her mother who had had a serious problem that went undiagnosed for about 5 years until she went to a big hospital in another city and there she received a diagnosis almost immediately and the help she needed. I looked up the number, called, explained my symptoms to the person who answered and my call was routed to the office of the Chief of Neurology. His secretary was very nice, asked the right questions and an appointment was made for me to see the doctor within the next week. The trip down was nearly 100 miles and all I could think was, if this is another disappointment, what's next. I met the doctor and liked him immediately. He was so very pleasant, listened to everything in a patient manner, didn't try to rush through the appointment as so many doctors do. He sent me for some basic tests, told me he'd contact me with the results, and I headed back home. Two days later he called. He said the tests had come back negative but if I was willing to go back, he was willing to keep trying to find out what the problem was. I went back a week later and had an MRI. The doctor called me the next day and asked if I would go back down to talk to him about what the MRI had shown. I said, can't you tell me over the phone? He said, yes he could but he felt he would like to speak to me at length in person. So, I went back. I sat and had a long conversation with this doctor, learning about my diagnosis of MS, the basics of what MS is and how it might affect my life as time went on. That was 36 years ago. I'll never forget that day and I will never forget that doctor. He was one of the nicest people I have ever had the good fortune to meet in life. He was my neurologist and a friend for nearly 23 years. He retired and shortly after, passed away. I have never found anyone even remotely like him, which isn't saying much for too many doctors. If I had given up after being ignored, insulted and brushed off by seven arrogant, know-it-all neurologists in my area, who knows, I might still be wondering what the he** is wrong with me. I've met so many people over the years who seem to think that doctors are gods of some sort, that they are all-knowing and what they say, MUST BE the truth. WRONG!!! Doctors are mere humans, some a little smarter than others, some a lot smarter than others, but they DO make mistakes, they are NOT perfect. If you think something is wrong and you're not getting the right answers, DON'T GIVE UP!!
dorry Member
I am sorry for your frustration and not being diagnosed correctly, and for the arrogance of the doctor who couldn't be bothered to look at your notes from another doctor to substantiate your condition. Doctors don't like their patients to be informed or to have knowledge. Many doctors add to the condition by creating a climate of anxiety over being given a false diagnosis when the patient is the one who is suffering. I have had this burning sensation in my legs for 4yrs. and my doctor doesn't listen to me. She has her own theory. I am frustrated and now feeling anxious as I know something is not right. I have to wait 2yrs. for an appt with a rheumatologist and offered physio. I refuse to go. I am given meds that make me more ill so I refuse medication and my doctor says she can't help me. Now I am having difficulty walking. Can't stand up for 10 mins. My legs are tired, My arms are tired. I can't stir my cooking pot. I have to rest my arms. I can't pick my feet up going upstairs and trip on the stairs. My legs and thighs feel as they have been scalded by boiling water. NO ONE IS LISTENING. My husband had weakness in his legs. The doctor ignored this. He was sleeping all the time and was in bed when the doctor came. She told my husband to get out of bed he didn't need to be there. He deteriorated we called the ambulance. The technician had a bad attitude and refused to take him to hospital. My husband's legs gave way and he collapsed. She then phoned for another ambulance saying to her colleague. This case is genuine. The technician said if my husband had hit the floor she couldn't pick him up due to Health and Safety rules. My husband deteriorated and went in to ICU. and transferred to a larger hospital. The neurologist said to my husband. "Why did you wait so long to come for treatment." I went in to anger mode and sat and wrote to my MP. equivalent to your Senator. My M.P wrote to the ambulance authorities. Long story short. This technician was reprimanded and had to be supervised for a long time. LESSONS LEARNED I HOPE! I mounted my own battle against our 2 G.P.s lying. and the other one who told my husband to get out of bed he didn't need to be there. I took my battle to the TOP. Healthcare Commission. It almost cost me a breakdown as a lot of work was involved in my battle confronting doctors to the highest level. I refused to have a meeting with the doctors. I knew they would use medical jargon to tie me in knots and be evasive as to NEGLIGENCE. in my husband's care. In the end Our G.P. came to our home and APOLOGISED. Taking full responsibility that mistakes were made. This is all I wanted. WHAT IS NOT CONFRONTED WILL NEVER CHANGE. All I wanted was for us to get good medical care. OUR RIGHT. And for doctors to wake up and never let this happen to another patient again. My husband had ENCEPHALITIS. And could have died. My husband eventually did die 6 yrs. ago of MESOTHELIOMA. (ASBESTOS CANCER). Legal battles and neglect of medical care would take too long to write. Painful battles for good medical care and for Justice and Truth. I don't regret fighting up for my husband for better care. He lost his last battle but he died with DIGNITY. Now I have my own battle for a proper diagnosis. A huge Challenge ahead. But I am ready. DON'T EVER GIVE UP! Get good family/friends support. Don't let anyone steal your DIGNITY. Best wishes. I feel your pain and here to support you.
dguthrie Member
First, I can’t believe neurologists in Canada aren’t taking into account the fact MS runs in your family trees, and that one had the balls to compare you to his other patients; that’s unreal. I’m sorry you still haven’t received your diagnosis. Surely there’s a neurologist who knows something about MS you can go to in Calgary. You talked about not being able to find a good neurologist who would listen to you, so I found a link to a list of all University of Calgary members in Neurosciences department, including links to each doctor you can open each name and check if their specialty is MS or not. I’m not sure who you saw before, but please don’t give up. Good luck and here’s the link: <a href='https://www.ucalgary.ca/dcns/about-dcns/faculty' target='_blank' rel='noopener noreferrer ugc'>https://www.ucalgary.ca/dcns/about-dcns/faculty</a>
1. lindaxlb Member
 According to all the neurologists none of my symptoms are indicative to ms and it means nothing that it’s in the family as it’s not hereditary. Fed up
jdarie Member
And your in Canada , where MS is so common!! Excuse me but in our business we have many relationships in Canada( I am in Alaska ) and it seems to me that your health care system is good if all you need is Wellness Care or you have a minor health problem, even chronic, like arthritis but given something like MS, or the horror stories I have heard about, for one , your hospital in Vancouver, I hope our system never devolves into these things. My husband’s Uncle died waiting for an MRI! I can get one in our small town today or tomorrow! The newer 3D too! Maybe they think you have just been looking for the Sativa all of these years! Why can’t your doctor give you a diagnosis and send you to a Good specialist, if you have one, for treatment? Or treat your symptoms themselves? I am sure there are rules there about that. Calgary isn’t far from Seattle. Go to the University of Washington MS Center and get a diagnosis, I am sure they will believe that!! And won’t need to go thru 25+ pages of history! I can diagnose u from AK in my bath tub soaking!! Especially with the Family history! What a nightmare, I hope you get the help and excellent medical attention that you deserve! <a href='http://msrrtc.washington.edu/' target='_blank' rel='noopener noreferrer ugc'>http://msrrtc.washington.edu/</a>
debbie1952 Member
I can’t understand your doctor. I have MS and my half sister has MS and my nephew was just told he has MS. I do think it runs in families or my family is just unlucky.

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