Multiple Sclerosis: Psychosomatic, Neurologic, Mood Disorder, or Personality?

2/20/09 1:40pm

Lisa, Wow, this is a powerful "scholarly" article that has opened my eyes. I have been hit with deep depression lately, but also with worsening symptoms. Which came first?? Could that inflammation in my spinal cord or brain be the reason for my increased depression? I want to learn more about the idea of "an inflammatory depression may require different therapeutic approaches than a reactive depression in MS."

To answer your questions, I was in Limboland (I called myself a "Maybe Baby") for four years before being positively diagnosed with MS, but we now know that I had it for 13 years before the diagnosis. I was, however, diagnosed with depression and Seasonal Affective Disorder before the MS. Looking back, I know that fatigue has been a big contributor to my depression. Or was it MS?

Joan

Thanks for this great follow-up article. You and Merelyme really started an important conversation.

Lisa Emrich, Health Guide

2/20/09 2:20pm

Joan,

I too am fascinated and inspired to research more into the inflammation/depression connection, if only for personal reasons. I believe that this could explain my experience through clinical depression (which was first diagnosed as SAD), multiple sclerosis, and rheumatoid arthritis.

It's comforting to know that there are others who share my experience. Thank you for opening yourself up like this. I'm so sorry to hear that you have been hit with deep depression and worsening symptoms. In contrast, I have just recently realized that a year-long struggle with symptoms from a major relapse which decided to malinger has finally resolved itself. Coincidentally, my mood has also lightened (but that could also be a change in anti-depressant.)

I definitely want to write more about this and I encourage you to continue expressing yourself through your blog. Those of us out here with similar experiences want to support you how we can.

Big hug,

Lisa

Mandy Crest, Health Guide

2/20/09 4:19pm

Truly, truly, fascinating.

I was never diagnosed with depression or psychosomatic illness, but prior to symptoms of MS, I had raging migraines for 30 years and, although doctors didn't accuse me of it being "all in my head," many a layperson did. It was very hurtful.

My personality definitely changed after MS came on the scene. Like you mentioned, though, age and life experiences were part of the equation. I feel I'm a better person today than I was before, but presumably that is a part of the natural maturing process taking place in my forties.

Lot of food for thought in this post, Lisa.

Lisa Emrich, Health Guide

2/21/09 5:48pm

Thanks Mandy,

As these comments come in, I think I'll let Clare know. She would probably like to talk with you about the Migraines as I know that they are truly a challenge.

About personality: If absentmindedness and lack of sharpness are included in personality traits, then most definitely my personality has changed somewhat also. But it is the speak-up and not be afraid to tell-it-like-it-is which I believe is more evident with me.

Of course, many things have happened in my life besides the MS diagnosis in the past decade. Hard to say where the change has come from, but I feel more confident now and that's a good feeling.

Denise Coleman

2/21/09 4:14pm

Thank you for this wonderful Post, it is clear you did a lot of research and we all benefit from that. Claire's story is one in which I am sure many of us can empathize with on many levels, from no or misdiagnosis to the never ending doctor visits that seem to bring us to the same place—nowhere.

You asked how many of us have been misdiagnosed with depression or some other mood disorder before being diagnosed with MS. I have the opposite story; after 12 years of having a diagnosis of MS my neurologist told me that perhaps I don't have MS after all. I have the lesions, the symptoms, the progression, but maybe it is some other demyelinating disease. Huh?

My doctor sent me to an MS specialist, whom I have seen twice now, for an evaluation. A new MRI showed a new lesion and active demyelination. I haven't been told what other diseases fall under the heading of demyelination and I have done some online research to try to figure out what else I might have but none of the options seemed compatible to what I am experiencing or what tests are showing.

Maybe it isn't supposed to bother me if there is no diagnosis, but I would like to know what is going on in my brain and my body. And if it isn't MS, could it be something for which there is a cure? Better treatment?

It seems that the four surgeries on my spine, including a spinal fusion, and the large amount of damage that occurred in the first two surgeries cloud the issue of what is actually causing the symptoms, my brain or my spine. If they are both part of the CNS what difference does it make?

Has anyone had a similar experience? What was the final diagnosis? I continue on in my search with appointments this month to see two more specialists, a urologist and a neuro-opthamologist. I'll let you know if and when I ever am re-diagnosed and until then, Best Wishes from Limboland.

Lisa Emrich, Health Guide

2/21/09 6:02pm

Denise,

I'm so sorry that you've been shoved into Limboland after so many years of knowing that MS is the monster you face. I, too, would love to know - if not MS, then what else? I am aware that treatment options are different for NeuroMyelitisOptica (NMO or Devic's) and that the outcome can differ.

The desire to give the disease a name is HUGE. That's part of Clare's story. She would like to be diagnosed so as to 1) know what it is and 2) being treating it. Wish I could just snap my fingers and make it so for both of you.

Also, thank you so much for the kind words on the research. Yes, I did spend a great deal of time reading several complete research studies. But it is something I like to do. It's hard to say, "now only spend x amount of time on research/writing," as I get fascinated by what I find and always seek to find the very best information and sources.

I do hope that you are having a good weekend. Thanks for commenting, too.

Robin

2/23/09 7:56pm

Thank you for writing this post. I was diagnosed with SPMS last year, with MRIs showing a number of brain and spine lesions. In 2007, I noticed pain and stiffness in my legs, which was diagnosed by primary care physicians as ileotibial band syndrome and stress, but turned out to be MS. I had had an episode of what was in retrospect optic neuritis about 15 years before, which was written off as a harmless brain infection by a neurologist.

Fortunately, my physical symptoms to date have been relatively mild. But I have had varying degrees of depression/anxiety for several decades, long before the optic neuritis, as well as problems spacing out that I could never get a handle on. Neither anti-depressants nor an embarrassing amount of therapy made much of a difference. Around the time my leg pain started, I also became very depressed about other things going on in my life. Since I was diagnosed, I’ve read some about the effects of MS on depression, and how depression to be the result of the disease process itself, not just how you “feel” about it. I haven’t seen anything about it in the MS literature, but since people experience MS in different ways, it seems possible that initially its effects could be largely affective and cognitive in some people. I very much believe that not all, but much of what was considered my chronic depression from “issues stemming from my childhood” was actually my nervous system crapping out.

I agree that once you are diagnosed with any “emotional” problem, it is very difficult to get anyone in the medical profession to take you seriously. I would be very curious to know if anyone has ever MRI’d large numbers of people with ongoing depression. Look forward to reading more.

Lisa Emrich, Health Guide

2/25/09 11:26pm

Robin,

Your story sounds similar to mine, even the detail of optic neuritis (however mine was dx optic neuritis at the time, but no demyelination on MRI). At first my depression was attributed to SAD (seasonal affective disorder) and stress from beginning an incredibly stressful doctoral program. Fortunately, antidepressants did help me even though depression seemed to be an excuse for vague symptoms.

I would love to see studies conducted on people who are diagnosed with longterm depression which give more detail about protein and antibody levels, as well as MRI scans. In retrospect, I wish I knew what my cykotine levels were at various times during the lowest depression periods. But I do believe that this is a field of interest for researchers.

As far as the MS literature, you're correct that there doesn't seem to be as much about the neurological causes of depression versus the situational/adjustment influences on depression. Read to the end of this post to see the outcome of a Neuropsychological exam I underwent to determine if I was experiencing some cognitive deficits. You may find it mildly entertaining.

I do thank you for your comment and look forward to reading more from you.

Zell

2/25/09 9:54pm

After having trouble with doctors not understanding how I could have pain with MS, I began to get more and more opinions on my psychological health possibly being my problem. It became so frustrating to have doctors jump to a psychological disorder when they couldn't explain my numerous (not common) MS symptoms. I was told I had somatization, depression, anxiety, and looked at as if I was seriously delliusional at times.

If I made an appt. to discuss serious symptoms affecting my daily life, I began to get anxious before the appt. During the appt. I would become emotional. I know this was because I was frustrated and suffering. I know this was because I felt misunderstood. There is nothing worse than looking for help and not getting it. I began getting a complex because I was not taken seriously and was not getting help. I began to doubt myself. Now, that is NOT what I paid thousands of dollars for. I know I am not suffering from anything but MS symptoms.

I feel like doctors can't be human and say "I'm not sure?". They feel they have to give you a diagnosis. And when they don't know...they turn to depression or anxiety 99% of the time.

Unfortunately, I have stopped going to the doctors because of this, and suffer in silence. I feel I cannot deal with the medical community's inability to take the time to get to know my case, and learn more about me. It's too hard to expect care, and to only get callous and hurried doctors.

Lisa Emrich, Health Guide

2/25/09 11:40pm

Zell,

I'm so sorry that you've not found an appropriate medical team. I am so thankful to be fortunate to have excellent care with folks who understand that MS does come with pain and that not everything about it is uniform.

The part you mention about getting nervous before an appointment is something I experience with my rheumatologist. She has strongly suggested that I lose some weight and I have not been extremely successful in that department. I worry that I will get lectured and I did just two weeks ago. Not fun.

But, I worry that you have given up on doctors and are not under anyone's watchful eye. Even if it were to just keep a record of what's going on with you, and to maybe be prescribed some medication and rehabilitation to combat symptoms and potential disability, I would hope that you continued looking for a neurologist.

Actually, I highly recommend that you try to find a neurologist who specializes in MS, perhaps in an MS center. If you are in the US, you can consult the Center Directory to find members of the Consortium of MS Centers.

The important thing is that YOU know MS causes real pain and that YOUR MS symptoms have every right to be unique. This is such a mysterious disease when you think about it. There is still so much we don't know.

I hope that you will make yourself at home here and continue to share your story. I am confident that there are others who have had similar experiences. It's good to know that we are not alone.

Thank you for your comment.

Jazz

3/19/11 12:49pm

I have had severe migraines since age 3. Signs of MS started at 8 with the eyes moving involuntarily back and forth. Body wouldn't do what I wanted it to do by age 18. I was clinically depressed for 2 years then had my first big episode at 24 and had a nervous breakdown at the same time, wasn't diagnosed til i was 26. Thing is I always thought it was me and my circumstances that caused my symptoms and not the MS. The migraines have disappeared for a few years now even though they plagued me for years but I did change my whole life style and cut out all cow products and found a huge difference in my life.

I find myself having to monitor my thoughts constantly and I still have bouts of depression. It can easily get too overwhelming.

Lisa Emrich, Health Guide

3/19/11 11:22pm

Hi Jazz,

Wow, it took so many years to finally get dx with MS. I can imagine how confusing and frustrating it must have been growing up to know that something wasn't right but not know what it was. Besides MS causing depression itself, those challenges would certainly affect your mental health.

How are you doing now? How is the MS and the depression?

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