Twenty six years ago. First repeated urinary infections. Then numbness from my left elbow to my thumb. I visited numerous doctors who administered multiple tests. But nothing showed up and there was nothing they could do for me, they told me. I visited many alternative health care practitioners and spent lots of time and money with no results and no improvement. All in search of a way to feel better or at least a diagnosis. When the numbness crept throughout my body, I desperately wanted to know what this was. I thought it would be so much easier just knowing if it had a name. When I lost vision in one eye (optic neuritis) and couldn’t lift myself from bed (severe fatigue), the neurologist made the diagnosis: multiple sclerosis (MS).
But my own internist told me that he didn’t think that I had MS and he didn’t think I should accept this conclusion. I was appalled. Here I was, relieved to have a diagnosis, and my own doctor was telling me that it wasn’t true! I feel the sick feeling in my stomach as I remember thinking that he didn’t believe me. Looking back, I know that wasn’t the case – he just didn’t agree with the diagnosis.
Over the next 12 years, when symptoms waxed and waned, severe and sometimes mild, I relied on the diagnosis to understand the experience. Yet, having a diagnosis didn’t change a thing. I was advised by my neurologist not to take any of the drug therapies available at that time. They were fairly toxic and I wasn’t “that†sick. Often, I wondered if others doubted if I really was sick (symptoms were vague and invisible) and there were times I wondered myself
When MRI technology verified that there was plaque confirming MS, I felt vindicated. I really did have a disease, even if there was still nothing to do about it. And, when I developed the brutal symptoms of ulcerative colitis (UC), bloody, uncontrollable stool and high fevers and more severe fatigue, I comforted myself with the knowledge that no one could doubt this was real. There was a diagnosis and objective findings. But still no drug therapy that cured it (only surgery to remove it).
I easily feel the pain of not being believed when I hear others searching to be believed. Searching for a diagnosis. It’s a lonely place. But we can’t stay there. This is when we have to believe that the only thing we CAN control is our mind and how we behave in the face of this.
Sandy Lahmann says
I have severe, severe, severe fatigue, numbness in my left leg, left arm and hand, and left side of my face, periodic paralysis of my left leg and left hand, foot drag with my left foot, ataxia, weakness in my legs, cognitive problems, nerve pain in my legs, my left eye periodically has difficulty focusing,tingling in my fingers, toes and lips, monoclonal spasms, tremors, and fine motor problems. The symptoms can come and go but I never can walk very far and the symptoms are always worse with fatigue. At my worst, I’m in a wheelchair. At my best, I can walk short distances in my home without a mobility aide.
However, I’ve been to 7 neurologists and I still don’t have a diagnosis. Sounds like MS. The first neurologist that did an MRI said there were 4 lesions on my MRI and he pointed them out. He said I have MS. However, then he immediately took my credit card number so he could sign me up for monthly delivery of a nutritional supplement containing lead and mercury in unknown quantities and which is a pyramid scheme and the person getting the money has the same last name as him. I went to the next neurologist. And the next. And the next. And the next. They all said there is nothing on my MRI. It’s totally clear. They said there is nothing on my spinal tap. Nothing on my evoked potentials. They said I don’t have MS. They said there is nothing wrong with me. They said to go see a psychiatrist and stop using mobility aides. I should have asked what they expected me to do, crawl across the floor?
It’s crazy making. Except for the wacko guy with the lead and mercury, none of them gave any credence to my report of my own symptoms. It doesn’t matter what I say I am experiencing. My experience doesn’t count. If it is not on the MRI, nothing is wrong with me. Not a single neurologist, including Wacko Man, would treat my symptoms. Currently my internal medicine doctor, who is still convinced something neurological is going on, is treating my symptoms. Somewhat. As best she can since she is not a neurologist.
Meanwhile, I’m a single parent with no extended family. I’ve lost my teaching career because of the fatigue. I’m working at a desk job I don’t like because it’s the only thing I can find in my community that I can do. When I get home in the evening, I’m too exhausted to do anything. I am not keeping up with things at home. I can’t keep up with my checking account. Checks are bouncing. I am always late paying bills. I can’t clean my house. I’ve spent so much on medical bills that my financial situation is dire. I’m currently paying my rent with my credit card and my credit limit is running out. I have no opportunity for going on disability. And let’s face it, SSDI and SSI are a joke.
How does one access resources when one doesn’t have a diagnosis? I lie. I tell everyone I do have MS. There’s a good chance I do but it just isn’t showing up on the MRI yet. Meanwhile, I feel like I’m sneaking around like a criminal. Soon they will all find out I’m just a fraud. I’m really just crazy.
I thought medical care in the US is supposed to be the best in the world. I guess I don’t have the secret code to get in. I don’t have the proper set of symptoms or test results or whatever. The last neurologist dumped me because I couldn’t pay my deductible and coinsurance upfront for another MRI. (This would be my sixth.)
I’m thinking I would have a better chance at a diagnosis and at appropriate care if I went to another country.
All I want is a neurologist to say “Something is wrong, I don’t know what it is, but I will treat your symptoms.” Meanwhile, everybody is stressing to get on the MS drugs as soon as possible to prevent getting any worse. My understanding is on the East Coast, if it looks like you might have MS, they’ll prescribe the MS drugs. However, not in my neck of the woods. And I don’t have the money to go elsewhere.
So, I’m currently getting my health care from my internal medicine doctor, my chiropractor and my acupuncturist. They have given me far more effective treatment for my symptoms than any neurologist has. And I just keep telling people I have MS. I’ve only had symptoms for 3 years. When I look at how long other people have had to wait for a diagnosis, 3 years doesn’t seem long. I just keep surrounding myself with supportive people who continually reassure me that I’m not crazy.
Julie says
I understand the desire for a diagnosis. I wanted one myself for so many difficult, frustrating years. There was the problem of not being believed, there was the problem of not having a clear explanation, but mostly there was the problem of not knowing what to expect in the coming month, year, decade, lifetime.
Unfortunately, there is a lot left to be learned about the autoimmune diseases. I have something that simply can not be diagnosed. The diagnosis doesn’t exist yet. When people ask what I’ve got I say “an autoimmune disease.” When they ask which one all I can say is “they haven’t done enough research yet to classify all of them. I have one of the unknown ones.” It’s frustrating. My doctors can vaguely guess at the disease course and they use the treatments that have been developed (marketed) for similar diseases, but that’s the best they’ve got.
I started seeing a new specialist last year. I told my PCP I wanted to see someone who worked with others in my situation so she sent me to the one that she sends all of her “difficult cases” to. At the first visit I described all of the symptoms, the treatments, etc. (you all know the routine.) Then, before she could begin, I told her: “I know there’s no diagnosis for this. I’m ok with that.” She was visibly relieved, explaining that it’s usually hard for patients to come to terms with the lack of diagnosis. I told her it took me a long time too.
So now I’m wondering, how many others are on this blog that don’t have a diagnosis and have been told they won’t get one? One of my doctors said that as many as 40% of the autoimmune diseases haven’t been classified yet. That seems higher than I would expect him to admit, but realistic in the face of the lack of research. So there must be others out there. Let me know if you’re there!