Misdiagnosed

snoopy_happy_dance

September 8, 2016

 

I have had 2 weeks to digest the fact that I never had Multiple Sclerosis, which was diagnosed in 1995 after many years of severe fatigue, weakness, brain fog, pain and sleep issues.  Misdiagnosed.

To say I did a happy dance at the neurologist’s office is an understatement.  I asked him rapid fire questions and he answered them honestly.  When I more likely sounded like an insolent child while asking “Why? Why? Why?” – in reference to how three different doctors in 2 states gave me this diagnosis- he said it was- in his opinion- because I have Fibromyalgia and Chronic Fatigue syndrome. He also believes I have had Rheumatoid Arthritis for the last few decades as well ( after being officially diagnosed with that last year.)

After my initial  thrill of joy- and shock wore off- all I thought about was the drugs I pumped into my body over the last 21 years. I’m not talking about a pill here or there; I am speaking of intravenous drugs- Solumedrol-  being  dripped into my veins over a week’s period of time, every 8 months or so,  for a duration of many years. I injected myself DAILY for 5 years with Copaxone. I took pills to keep me awake-Provigil- but it never seemed to do it’s job. After several years on this drug, I stopped. The fatigue is like another layer of skin on me… it’s a part of who I am and unfortunately I am used to it.

ivsolumedrol

My mind kept running in circles though, as to HOW the doctors stuck with the MS label, even when I never showed signs of ‘sclerosis’ on my brain or spine (lesions).  Not on any of the multitude of brain and neck and spinal MRI’s I  had done. I kept replaying what my doctor told me, and thinking back through the years of my life as if it were on a movie reel.  Multiple Sclerosis is an autoimmune disease. Rheumatoid arthritis is an autoimmune disease. Chronic Fatigue syndrome is an autoimmune disease. Fibromyalgia, no… but the symptoms are similar to the other 3 illnesses.

Back in 1995 when I was diagnosed, the doctor at the time told me that Chronic Fatigue syndrome was a ‘newer’ term used when physicians couldn’t quite figure out the cause of a persons ailments. She called it a Dump Diagnosis. She said it was not a diagnosis they liked giving out to patients. (So… it’s easier to tell someone they have MS? Yeah, that doesn’t give me the warm fuzzies ,Doc.)  But she did tell me that I had CFS. Go figure.

The similarities are there to see, if you look them over:

MULTIPLE SCLEROSIS symptoms:

•Blurred or double vision (CHECK, fuzzy vision, but due to RA)

•Thinking problems  (CHECK)

•Clumsiness or a lack of coordination  (BIG CHECK)

•Loss of balance  (CHECK…my life story)

•Numbness (CHECK)

•Tingling (CHECK)

• Weakness in an arm or leg  (CHECK)

 

Chronic Fatigue Syndrome-

Chronic fatigue syndrome can be MISDIAGNOSED or overlooked because its symptoms are similar to so many other illnesses. (MS for one).  Fatigue, for instance, can be a symptom for hundreds of illnesses.

The fatigue of CFS is accompanied by characteristic illness symptoms lasting at least 6 months. These symptoms include:

•increased malaise (extreme exhaustion and sickness) following physical activity or mental exertion  (CHECK)

•problems with sleep  (BIG CHECK)

•difficulties with memory and concentration (CHECK, CHECK, CHECK)

•persistent muscle pain (CHECK)

•joint pain (without redness or swelling)  (BIG TIME CHECK)

•headache (CHECK)

•tender lymph nodes in the neck or armpit (CHECK)

•sore throat (CHECK)

•brain fog (feeling like you’re in a mental fog)   (CHECK)

•difficulty maintaining an upright position, dizziness, balance problems or fainting (OH HELL YES, CHECK!!)

•allergies or sensitivities to foods, odors, chemicals, medications, or noise (CHECK on the latter)

•irritable bowel  (CHECK)

•chills and night sweats  (CHECK and CHECK)

•visual disturbances (sensitivity to light, blurring, eye pain) (CHECK…I have Sjogrens syndrome)

•depression or mood problems (irritability, mood swings, anxiety, panic attacks) (CHECK- hey, it’s understandble, right?)  AND Numbness, tingling, or burning sensations in the face, hands, or feet. (CHECK on the feet).

Rheumatoid Arthritis Symptoms That Affect the Entire Body

Rheumatoid arthritis can go beyond your joints. You may feel:

  • Fatigue
  • Stiffness (CHECK)
  • Muscle aches  (CHECK)
  • JOINT PAIN, swelling  (BIG CHECK)
  • Sleep issues-  Johns Hopkins’ Rheumatoid Arthritis treatment information page says Rheumatoid Arthritis (RA) patients “often need over ten hours of sleep a night, or eight hours a night and a two-hour nap during the day.” (CHECK, CHECK, CHECK)

FIBROMYALGIA symptoms:

•Widespread pain. The pain associated with fibromyalgia often is described as a constant dull ache that has lasted for at least three months. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.  (CHECK)

•Fatigue. People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is often disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea.  (CHECK… and I do wear a Cpap to sleep at night).

I can see all the similarities between them, and could understand some confusion for the doctors, but I still fall back to the lesions- or lack thereof.  HOW did they all diagnosis MS without the lesions being present?  It’s a head scratcher to me. I had been told in 1995 that I had Chronic Fatigue Syndrome, and Fibromyalgia, but for 21 years they were set on the back burner, when they should have been front and center. I was not treated at all for them.

I’m happy to have found a GOOD neurologist, finally. (It’s difficult finding a good physician, period, here in Vegas.) Now I can focus on the RA and Fibromyalgia and just have the knowledge that I have CHRONIC FATIGUE syndrome and not MS and be a happy camper.

Misdiagnosed for 21 years. Better late than never to find out the truth.