No One Understands Me

By peacenik2013

2 min read

In 1998, working in a job I loved, I suddenly could not understand what I was saying to people. I went home and then could not speak for three weeks. The doctor said it was just stress from my husband being recently diagnosed with Scleroderma.

In 1999 the leg pain and severe fatigue began. In 2001, I lost all vision in my right eye and began having additional language problems. Neurologists found a 'spot' on my brain and 'funky optic nerve' in my right eye. I had neuropsych evaluations and testing and was found to have severe language deficits that related to the area of the brain the spot was in. The neurologist wanted to have a long discussion with me - yea, I was abused in a past relationship, yea I was worried about my current husband's diagnosis, no i don't think these things relate to what is happening to me, and no I don't want your DRUGS. I was referred to a neuro psychiatrist. (btw, I went and he said I had a neuro problem)

I stopped going to the dr. What was the point? I don't completely believe in allopathic medicine - I believe in herbs and natural meds. But how do you find out what is wrong with you if not for a dr? I spent many years on a fairly regular rhythm - spring and fall, always sick - then the relentless fatigue - pain is almost constant by 2002 and worse every year. Every physical - I was a great actor - yep, I'm fantastic.

2012 the bottom fell out. One day in April, I could no longer talk right, walk right, remember anything from one side of the house to the next, pain was incredible - the ER asked me, didn't I know I had MS? Huh?

In June 2012, a neurologist sat across the room and told me my spinal results said 99.9% MS. Wow, so that's what this is. He gave me a list of DMDs and told me to pick - okay, I guess I have to do this thing I don't believe in - I'll take copaxone. Funny, he wrote in my records that he considered me 'possible' MS

My neuro then disappeared - I ended up at Hopkins MS Center in November 2012 when a neurologist there diagnosed me with MS. But he didn't feel any of my symptoms were MS - he wants me to see a neuro psychiatrist - again?

In 2013 my family doctor diagnosed me with concurrent Fibromyalgia, but when I refuse the drug she prescribes, says she can't help me anymore.

Why are doctors constantly passing patients off on other doctors, who then pass you back to the original doctor? Why can't doctors understand some patients do not want their drugs, but could use their support.

The American healthcare crisis is caused by just this kind of idiocy. Not one of these doctors really considered the diagnostic evidence of another of the doctors. Not one of them considered me as a person, with my own beliefs. How are we to navigate life with MS when doctors do not listen to us?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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gabbywilson372 Member
My english teacher had all the seniors do one big research presentation at the end of our school year and, since they tell you to stick to what you know, I chose to do mine over MS and went down the path of currupt doctors. I found out some pretty harsh things that our society is letting go unseen. But some, not all, doctors just want to put you on the drug that will help THEM make more money. They would take bribes or trips to exotic places just to force a patient to take a drug that might not even help. There were even deaths recorded due the switching of meds.
1. peacenik2013 Member
 I saw a Homeopath today who thinks he can help me. This is the first doctor who has listened to me at all. He is so confident the treatment he gave me today will make me feel better, he feels I will only need to see him twice more at six month intervals as long as I am doing ok. He is encouraging me to give the Tecfidera another four to sux months and then decide if I want this drug. At the price I am seeing my insurance charged, and not knowing if I will have coverage for it next year - this sounds like a good plan. I really just don't believe these drugs are doing anything for us at all - just making more money for the corporate greedy.
mkmk Member
I have NOT been diagnosed with MS. But my complaints and issues are not being heard or understood and my searches keep bringing me to MS symptoms. I came for advice or any personal experiences. Does this sound like MS to you? Should I try a Nuero? I was diagnosed with meniere's 7 years ago. I believe I also fractured my tailbone when I was little (also never got help from the doctors), I have herniated disks, fatigue, dizziness, tinnitus, extreme joint pain, severe stomach pains. I had a physically demanding job, I went from doctor to doctor practically begging for help. I had to quit my job, I thought the break could help and I did not have any other options, I was practically debilitated and caring for a baby. I stopped working and my symptoms have not improved. The doctors pass me back and forth. They put me on one antidepressant. When that didn’t fix me, they gave me a second antidepressant to try. I tried a rheumatologist because many were trying to refer me to a neuro/rheumatologist. I went to a rheumatologist and I think she thought I was looking for drugs? Or pity? My husband was even there, and agreed, she kept looking at HIM every time I explained my symptoms and the severity. Like I couldn't possibly be telling the truth? I am 29. I have not felt ‘right’ since I was a teen. My family has autoimmune issues and a few rare disorders that I thought could be screened for to rule out. One doctor wants me to go to a specialist that will cost me about 2k after all the treatment, for Lyme, but the other doctor said it can’t be lyme. That doctor told me my severe pain is due to being overly-flexible, anxiety and depression and the inner ear issue is separate. I cannot focus, I can hardly put pressure on my left leg due to SI(hip) pain. I cannot lie flat on my back, or else I will physically lock up and get stuck there. My ear rings loudly, almost always ringing but sometimes it is louder than others. I have pretty bad TMJ, especially painful on the same side of my bad ear. I have a spot on the tip of my tongue, shoulder, and neck that look like colorless birthmarks or warts but they have been there a long time and I recently read into multiple neoplasms, I think….. Which is related to one of my familial issues, but the doctor did not seem to be concerned with that either. Stomach pains that have made me black out in pain, especially when having to urinate. Stomach pain is almost always there, and gets more or less severe. My wrist was x-rayed, but I can hardly use it hurts so bad. Please help, my family is starting to think I’m nuts, or just lazy. I can use any advice. It’s ironic that the doctors are making me more depressed and calling depression the reason for my issues. I do not think this is a fair diagnosis, considering they diagnosed me with depression within moments of meeting me, and do not question anything else.
1. mkmk Member
 I also have a hard time swallowing, it feels like I have a small rock in my throat, and my throat often feels very sore.
2. Lori Foster Member
 Hi @mkmk. You must be horribly frustrated. With symptoms like yours, it can take a long time to get an accurate diagnosis because they can be indicative of some many different health conditions. You really have to be your own best advocate. We can't give medical advice because we are not medical experts, but we can share with you some articles that might help. First, you might find it helpful to evaluate your relationship with your primary care doctor. Do you feel you are being heard, that your doctor has compassion for you? If not, you might want to consider finding a doctor who will be a true partner in your care. If you strongly believe you have MS, you would need a referral from your primary care doctor to a neurologist. <a href="https://multiplesclerosis.net/diagnosis/" rel="noopener" target="_blank">Here</a> is an article about the diagnostic process for MS. You might also benefit from another trip to a rheumatologist. Psoriatic Arthritis is a type of arthritis that cannot be diagnosed with blood tests. If fact, there is no definitive test for it. A diagnosis requires a doctor who is familiar with the disease and can put the pieces of the puzzle together. <a href="https://psoriatic-arthritis.com/psa-symptoms/" rel="noopener" target="_blank">Here</a> is an article about the symptoms of PsA. <a href="https://psoriatic-arthritis.com/how-doctor-diagnose/" rel="noopener" target="_blank">Here </a>is an article about the diagnostic process. As I am sure you are discovering, there are several other health conditions that mimic the symptoms of MS. <a href="https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions/" rel="noopener" target="_blank">Here</a> is an article that lists them. I hope these links help and that you get the answers and relief you deserve. Best wishes! - Lori (Team Member)

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