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Thread: Was last here 15 years ago.....

  1. #41
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    Okay, back to what Agate did - something of a chronical of my MS. I looked up as many Doctor records as I could find. There are things dating back to the 60s that I obviously do not have a record of. However, I remember having extreme fatigue and in describing it through the years I usually say it is debilitating fatigue and not like tiredness.

    Late 60s - While living in Alexandria, Va my parents insisted I come home one week-end and let their Doctor examine me. I fought it, they persisted. So I came for a physical. Everything looked good and he said he felt I was working too hard. He was in touch with my Father at the time on a fairly regular basis and would ask him about his daughter and my Dad would tell him I was working many hours and doing it under stress. Reasonable conclusion.

    Moved to Raleigh in 1973 and started in with different Dr. whose records burned, so first entry is in 1977.

    1/77 Lack of energy, lack of interest in getting things done, increased fatigue. Dx. Fatigue of unknown cause
    1978 Drooping of right eyelid & corner of mouth
    1979 Sent to Duke Eye Clinic to see specialist in corneal diseases. Physician there thinks she had a Bell's Palsy and chances of complete recovery are small.
    1980 Some weak spells with heaviness in arms & legs.
    1982 Severe tight feeling in thighs which came on abruptly and lasted for 48 hours
    1983 Parasthesias in 3rd, 4th & 5th fingers of left hand, every morning upon waking for a month. Subsides in 30 to 60 minutes after working hand.
    1984 Fatigue, lethargic has some light headiness with blurred vision
    1987 Pain over right lateral hip area. Comes & goes but has been more aggravated by walking the past couple of weeks
    1990 Neck & head disorder. Comes and goes infrequently. Restricts lateral rotation of head. Pain radiates up into occipital portion of head
    1990 3 or 4 episodes of waking hurting all over - back of neck, arms and legs. By noon following day might be alright, but sometimes takes up to 3 days
    1991 Dizziness off & on. No true pattern. Feels confident walking rapidly will help bring it on. Occasionally has occipital headache. Had a fall about a month ago
    1993 Dizziness, vertigo 3 mornings in a row. Slight occipital headache.
    1993 Still having momentary, brief episodes of lightheadedness & dizziness associated with general malaise
    1994 Raynaud's phenomenon for about a year
    1998 Sensory parathesias in feet
    1998 Neck pain
    1999 Lot of neck pain. Comes & goes. Sometimes severe. At times marked limitation in range of motion.
    1999 Continued feeling of lightheadedness. Sudden onsets, out of the blue light headedness and weakness

    1999 Diagnosed MS Dr. Bertics

    The PCP then resigned me as a patient. I had been his patient for 25 years. I took myself to Dr. Bertics with no records.

    During the years with this PCP I had many UTIs, but I started going to a Urologist for those.
    In 1987 I drove to Ft Bragg, NC (about 60 miles). When I arrived I opened my car door to get out and my left leg totally gave way. I grabbed car door to keep from going all the way to the ground.


    Agate, I do not remember seeing Howie's MRI. Does this outdo his in length?
    Last edited by Virginia; 06-29-2019 at 01:24 PM.
    Virginia

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  3. #42
    Distinguished Community Member Howie's Avatar
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    Virginia, for the summery of the MRI, it said "Classic MS".
    Evolution spans the Universe.

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  5. #43
    Distinguished Community Member Sunshine's Avatar
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    So many different paths to dx.

    Was at work and i began to have serious pain like being hit by a crow bar starting in back of thighs. Every few days it would move down the body. My joke was it would eventually move into the floor from my feet and be done with it...but when it moved down far, then the odd and painful sensations rotated alll over my body. And an outbreak of HSV appeared...My PCP said it was weird and if it happened again,call my gyn.

    The day before thanksgiving 1998, I was at work and called my GYN because it worsened and fared up. She said, “Get downto my office immediately because if you wait until hanksgiving, you will have to go to the ER. Got my attention! She had me stop at the lab and give dozens of tubes of blood. I knew she was thinking of MS by her questions. Funny thing was that a few months earlier, I was reading an article in the paper on the ages MS appears. I was not 6 months past the age group. I called out.”Honey, I am not going to get MS)—- punished for showing off— jinxed it..

    She noted I grew up up north too and sent me to a neurologist the next week. That starte the Evans, 2nd and 3rd and 4th opinonis, reading up on it, joining BT bulletin board which was pretty new, taking off swimming and changed to eating a more nutrition diet...That was 20 years ago. Brain lesions did not show up until around 2016ish, prior to that it was on lclinical grounds...

    Had MS light, still worked, raised kids, swam, started to surf. By 2004 intense muscle spasms crippled me— the worst was during IRMA. Doc suspicious, tested me for SPS and it was SPS was also diagnosed. No longer could work, rapid disability. It is humbling. What I thought wa s my tremendous will power, was actually a combo of will power and luck.
    Last edited by Sunshine; 07-01-2019 at 10:07 AM.

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  7. #44
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    So, my road: pretty straightforward. I was living in Georgia, working with people with disabilities, when I began to call down a lot.....my left leg would collapse under me. This happened several times. Fortunately I didn't suffer any broken bones. A friend who is a nurse suggested I see a neurologist...perhaps I was having petit mal seizures, but whatever was happening, it looked to be neurological to her. So I made an appointment with the neuro she recommended. I walked across the parking lot to get in to the building where the offices were. I found out later that he happened to be looking out the window, watched me walking, and suspected just from that, that I had ms. This was in November of 1983. He ran some tests, and did a spinal tap t o confirm his suspicions, but it was clear to him from the beginning. He told me the week of Christmas that year, with the comment, "i hope this doesn't ruin your holiday!"

    At the time MS was very rare in the south...I was the only patient he had or had seen, with it. But of course I was born in the Midwest,, and only in Georgia for a year or so. Like some of you, I probably was dealing with m s related issues long before I walked across that parking lot, all the way back to my college years,1965 forward, when I had trouble walking on footpaths that were irregular (sand, gravel, dirt).

    It was later in January of 1984 that I experienced my first major flare...hitting predominantly my left side, vision, right arm. And major fatigue...... I was in the hospital for nearly_3 months before the doctor decided to "take the risk " and injected me with something called Acth...a steroid. That's all theyhad, then.....

    I was on betaseron when it first became available for about 12 years. Now I'm not taking any MS-drugs.

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  9. #45
    Distinguished Community Member agate's Avatar
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    Not every neuro can spot someone with MS from miles away! I guess it's nice that he said he hoped he didn't ruin your Christmas but he certainly wasn't caroling out tidings of comfort and joy.

    I understand doctors absolutely hate to tell a patient that the dx is MS or some other such chronic disorder. They know it will probably be a drastic life-changer, affecting not just the patient but everyone the person knows or is related to.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #46
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    Agate, in my opinion both Cat and Sunshine had smart Doctors. I did not. What I put on that list did not include the times I stood up and told him that I knew it looked like I was standing still, but my body felt like it was swaying, like I had just come off a long boat ride. It did not include all the times I kept telling him I had tingling and burning all the time in my feet and up my legs and sometimes in my hands. There were many other things over that 25 years. However, he was an Internist and I would not have expected him to diagnose MS, but I would have thought that with his training he would spot enough neurological symptoms to send me to a Neurologist. He told me numerous times that there couldn't be anything serious wrong with me that "I was the perfect picture of health".

    Before the Neurologist that diagnosed me I went to see another neurologist in the practice where I go now. Again, no records. However, the above Internist had said that I probably had peripheral neuropathy. So that is what I told him I had. He did a nerve conduction test and told me I had the nerves of a 30 year old. But in a later visit said that I did have peripheral neuropathy. That is when I went to the Doctor who diagnosed me. Just simply wiser and cared enough to look further, because when I told him I had peripheral neuropathy he just said well we will see, first lets do an exam. Then he said you might just have a pinched nerve, lets do an MRI and that was it. He just cared enough to look further and wise enough not to take another doctors diagnosis. Of course, he continued to do many test, but there really was not any doubt in his mind. He wanted to prove it to me.

    I am glad when others like Cat and Sunshine have gone to Doctors who listened and looked with a trained eye and got a fairly quick diagnosis. I had a friend in a live support group that I use to attend who went to a Dermatologist who was a company doctor where she worked. She just started talking to him and after that one visit he sent her to a Neurologist, although she had very few symptoms of MS. He told her later that she said something that rung a bell with him. She was diagnosed two weeks before she was scheduled to get a pink slip and was able to get long term disability. She told me that she just did not know what she would have done if she had not been able to get that.

    The Doctors I went to all had good reputations in high end practices, but as we have discussed so many times there are doctors and there are doctors, just as with any profession.
    Virginia

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