Another great essay

[Sunshine]

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This can easily be seen to be pertinent to many of us with MS. I sure can relate to his experience of self and of docs.

I learned , painfully, to ditch docs like these right off the bat. My most recent was the doc at Mayo and his staff who implied perhaps stress was a factor in my SPS. Or bad local doctoring.

[Virginia]

Sunshine, if I knew where the Doctor is that treated me for 25 years and had all my medical records in front of him, that clearly indicated that something neurological was wrong with me, I would print this out and send it to him. However, I do not know where he is. I tried to look him up but could not find him. While he was an internist and I did not expect him to diagnose me, I would certainly have expected him to refer me to a Neurologist instead of a Psychiatrist. I saw the psychiatrist one time and he told me that I did not need him and that if I ever did he would be there. I didn't. If I let myself dwell on it I could go nuts thinking about it - 25 YEARS of going in and telling him things that should have been absolutely a no brainer that I needed a Neurologist. I had to figure it out on my own, when I finally got to a point that I was barely walking. I get very upset thinking about it.

[Sunshine]

Stinks. Nice to know we aren’t alone with this experience

[agate]

Virginia, I don't know if there are any of these doctors still around but there were some doctors who didn't believe in telling patients they had MS even though it was quite obvious to the doctors.

The idea was that what you don't know won't hurt you, and they didn't want to encourage people to think of themselves as disabled ("to adopt an invalid role"). They actually thought they'd be doing you a favor. You'd be obliged to work longer, probably, than if you knew you had a potentially disabling condition, and you'd earn more and be better off.

Years ago I read a book by a college professor who had MS. His doctor knew about it and even told this man's wife but they agreed not to tell him. I don't recall how many years passed before he found out but it was a long time.

I found that the book is still around:

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[Virginia]

Agate, this Doctor adversely affected my financial life. My husband and I would have made different financial decisions had we known. There are other decisions I would have made after he died that would have been different, including selling a house that had one small step from garage to kitchen. Inside of house was all on one floor.

In addition, I get really upset because when I found a Neurologist who diagnosed me I called this internist and asked him if he knew of anything that was in my records. He told me that he would take my records home and go through them and call me. He never called. He was still my PCP and within several months I received a letter resigning me as patient. He stated that he was cutting back on his patients and that I would be seen in that office for the next 30 days on an emergency basis only and after that not at all. It was a large practice. He stated in the letter that unfortunately none of the other doctors were taking new patients.

The truth was that he was afraid I would sue him and he didn't want me seeing any of the other doctors who were in practice with him and telling them what had happened to me. I got my records inadvertently. I needed to file something regarding my husband's death. I called and asked if I could still get his records and they said yes, but when they sent them they sent mine by mistake. When I went through them I saw the same thing he did when he took them home to look at and then resigned me.

Also, he had been my husband's doctor for many years until his death. This was extremely hurtful. When I told my Neurologist what had happened he was obviously angry and said "you mean in that big practice no one could take you after 25 years". He helped me get another PCP.

I use to see a nurse that worked in that practice and had worked for this doctor at one time. She knew me and my husband and said that we were some of his first patients. She always wanted me to write him a letter and tell him everything I found in my records. It was through these records that my Neurologist knew that I had had MS for at least the 25 years before I started going to him. He said it had probably been more like 30 years.

I think I have good reason to be angry. He cost me a lot in terms of my financial security and my being able to take care of myself where I live.

[Sunshine]

Oh Virginia! They really harmed you. Heck, IM angry too, that this happened to you!
Goddamn arrogant thieves pretending to be docs.

[Virginia]

Sunshine, my husband trusted him. That hurts a lot.

[agate]

If I read this right, Virginia, you found out by reading your medical records from this doctor many years later that he had diagnosed you with MS without telling you.

If he were confronted with that fact, he'd probably say he thought he did tell you. That would be his way out, or at least that's my guess.

He must have been pretty sure you had MS and didn't mention it--maybe because he didn't want to lose you as a patient. You might have been referred to a neurologist and left the PCP. Some people do that though most seem to have both a neuro and a PCP, or even just a PCP.

I'd be furious too.

[Virginia]

No Agate, he did not diagnose me. However, he had enough evidence that he should have known I had a neurological problem. Some of them were:
Drooping of right eyelid and corner of mouth
Weak spells with heaviness in arms and legs
Fatigue, lethargic, some light headiness, blurred vision
Severe tight feeling in thighs which came on abruptly and lasted 2 days - thought I was going paralyze
Paresthesia in 3rd, 4th & 5th fingers of left hand - every morning upon waking for about a month to six weeks. Subsides later in day.
Neck & head disorder - comes and goes infrequently. Restricts lateral rotation of head. Pain radiates up into occipital portion of head.
A number of episodes of waking hurting all over - back of neck, arms & legs. Unable to get out of bed or work. By noon of following day might be alright , but sometimes takes 2 to 3 days
Dizziness off and on. No true pattern. Feels confident walking rapidly will help bring it on. Occasionally has occipital headache
Dizziness - Vertigo 3 mornings in a row. Slight occipital headache
Still having momentary & brief episodes of lightheadedness & dizziness associated with general malaise
Raynaud's phenomenon for about a year
Continued feeling of lightheadedness. Sudden onsets, out of the blue light headedness & weakness
Feeling of being out of balance - describes it as having been on a boat for a long time and can't walk well on ground
Veered into wall while walking rapidly down hall at work. Did not realize was doing it
Some periodic episodes of stumbling when walking, almost falling, especially when trying to walk fast
Lot of neck pain. Comes & goes. Sometimes severe. At times marked limitation in range of motion
Sensory paresthesia in feet
Describes being so weak that vision is dimmed at times
Gait is not right when walking. Cannot walk fast.
Vision is turning brown


In addition to above I was, according to him, going in about once a year complaining of severe fatigue, unrelenting, almost debilitating

For all of the above and a few other times when I complained of swelling in feet, I was resigned as a patient. I know the above sounds like I was always going to him, but remember this all occurred over a period of 25 years. I did go at other times complaining of the severe fatigue.

When he sent the typed letter resigning me, at the bottom he wrote in his handwriting "I have really enjoyed having you as a patient. I truly have".

One other thing that got to me is that he never even bothered to tell me what he had found in my records, I had to read them for myself to know.

[stillstANNding]

I am so sorry that this happened to you, Virginia. He must have known.

ANN

[nuthatch]

Great article, Sunshine. It clearly describes how I feel after dealing with the medical establishment most of my adult life. Incompetence and/or an "I don't care attitude" has permanently turned me off to doctors. I, more or less, fend for myself as much as humanly possible. Everything appears to be driven by money and I refuse to play that game, regardless if it's money from my own pocket, the insurance company's or the government's. After reading the forum, I often wonder how it is that only some people get treated like their lives matter and others are simply disregarded and discarded.

As my condition progresses, I find myself thinking these same thoughts.

I began spending considerable time picturing what my absence would look like, convincing myself that my loved ones would be better off without me. I didn’t want to end my life. I wanted to escape the terminal collapse of my world.

[Sunshine]

Nuthatch, I understand your frustration and thoughts about death. I think that its only human to feel that way after struggling with an awful disease and being dismissed. Especially when docs just dont seem to give a dam.

WHen a doc says, “Its stress”, that tells me its a lazy doc. My immunologist summed it up nicely when he said that this is a sign of laziness in the doc (NOt his word, jus ta summary of what he said).

You take the good with the bad. Speak up when a doc isn’t giving good care if on the sum of it, he or she is decent enough. Keep reading so as to ask questions and push for tests.

WHen this happened to many of us, including Virginia, there was no internet, or it was just starting. So it was hard to gather enough medical info to even know what questions to ask.

I recall my first consult with a gyn where I told him I was fatigued beyond fatigue, my hands tingled, and there was a third thing I cant recall anymore. He said,”SUnshine, what would cause such disparate symptoms”, to which I said,,” I dont know!?! I thoughT I would tell you and you would say” OH! It’s the Tinkelberry Syndrome. LEts get you tested”

One year later the big symptoms began, he had left practice and my new GYN , the day before Thanksgiving by phone when I called barely able to walk, said, “YOu leave work right now, and I want you to get these labs done and see a neurologist right away which I have set up an appointment for you”> Course that neuro said,”Stress” ....that was my first experience with the contrast between good doctors and lazy ones.

[Virginia]

Sunshine, that is so true about lazy Doctors. I had not thought of it in that way. It is true that when I was going through my ordeal there was no place to go for information. I bought several medical books. One time when that Doctor, on his way out of the room, said you might just have Peripheral Neuropathy. I got out every book I had looking that up and one thing would lead me to another thing. It finally led to multiple sclerosis. It said that most people were diagnosed in their 20s and that it was very rare after 40. I remember my thought was - boy, this is one time I am glad I am older than that.

Nuthatch, I understand what you are saying, however your loved ones would never be better off without you - not your husband, your children or your grandchildren. They are worth living for. I am not in your situation, and there is nothing good about it. The one thing is that you had the wherewithal to build the house you are in and also you enjoy your crafts and jigsaw puzzles and things like that. Your mind is sharp and you obviously are well read. Try to remember these things as well as all the bad. You are normally an upbeat person, and you are missed on here when you do not come on.