Symptoms and Lesions, denial or reality?

[dawlfin]

Hi all,

So over the years I seem to go in and out of denial. The reason I feel this way is because I have not had any significant changes on my MRIs.

Yes I have lesions (in the brain), but they remain unchanged. Never any enhancing lesions, no black holes. No new lesions except one small one on my thoracic spine, that could only be detected by one MRI view.This could just be an artifact as it could only be detected in one plane.

I know that symptoms do not always match with lesion location. And that there can also be lesions that do not have corresponding symptoms. But, it is hard to believe that I have MS. My symptoms always seem mild compared to the stories I read in this forum.

I went off Copaxone and seeing my neurologist for two years because I decided I did not have it.

Until late 2015. Right leg pain,cramps, knee buckling, a fall down the stairs. Return of symptoms in my right arm, discomfort in the right torso. Disc disease or MS? Some pain in my face again, but manageable.

I have had some abnormal reflexes- but they can be explained by disc disease- including a herniated cervical disc that led me to surgery (laminectomy) for relief of pain and muscle spasms in my arm, in 2009.

I have never had optic neuritis, numbness, or any significant weakness. It is always pain and muscle aches, and weird sensations. Not exactly detectable in the office, by the neurologist- at least they never said so.

I have had depression and rarely anxiety. I have had considerable fatigue a few times. I was diagnosed with fibromyalgia 30yrs ago, however the symptoms are rarely present- unless I have sleep issues.

I feel like there needs to be a "smoking gun" that nails the diagnosis for me. I see the neuro on the 21st to go over the brain, cervical and thoracic MRIs I had in the last two weeks.

What if the lesions are from a long ago, mild, encephalitis ,or migraines? What if my pain can be explained by shingles type flairs that never have a rash? I have never been told that I have or had encephalitis or migraines.

So far the neuro office said the brain and cervical MRI was unchanged in a phone message. Now for the thoracic MRI. Then what I wonder.

Ho hum, we will see. Sometimes "a little knowledge is a dangerous thing". Like a med student that starts to think they have this or that disease- as they learn how to be a doctor. What if it is all in my head?

-Dawl

[mjan]

Well I can appreciate your skepticism. I too have no changes on MRIs over 12 years. I went from probable diagnosis to finally a new set of "eyes" and yes you have MS. Even got a 2nd opinion.

I do have spasticity in leg muscles AND lumbar stenosis. So I always go to my orthopedic doc first to rule in/out Orthopedic disc issues or MS. Seems to be both causing the pain and spasms.

But it was the cognitive issues that cost me my career and that hurt.

I never had any DMTs due to severe drug interaction/allergy issues.
My neuro agrees. Plus I am not really progressing which I am grateful for.

Makes you wonder...

Hang in there, Jan

[marti]

I could have written your post. Been in denial since 2001 and went off Copaxone many times until I just stopped it completely. I have a lot of symptoms and a lot of pain. But I also have a LOT of other illnesses that share the same symptoms.

So I'm playing Russian Roulette, taking chances and playing the waiting game. I know this isn't recommended, but I'm sick of the meds and the fear and the doubts. Just doing the best I can.

[dawlfin]

Well I can appreciate your skepticism. I too have no changes on MRIs over 12 years. I went from probable diagnosis to finally a new set of "eyes" and yes you have MS. Even got a 2nd opinion.

I do have spasticity in leg muscles AND lumbar stenosis. So I always go to my orthopedic doc first to rule in/out Orthopedic disc issues or MS. Seems to be both causing the pain and spasms.

But it was the cognitive issues that cost me my career and that hurt.

I never had any DMTs due to severe drug interaction/allergy issues.
My neuro agrees. Plus I am not really progressing which I am grateful for.

Makes you wonder...

Hang in there, Jan

Thanks for your input.

[dawlfin]

I could have written your post. Been in denial since 2001 and went off Copaxone many times until I just stopped it completely. I have a lot of symptoms and a lot of pain. But I also have a LOT of other illnesses that share the same symptoms.

So I'm playing Russian Roulette, taking chances and playing the waiting game. I know this isn't recommended, but I'm sick of the meds and the fear and the doubts. Just doing the best I can.

Thanks Marti. I am sure some people who read this think we are both crazy to go off meds.
Time will tell.

[Tia1]

I am currently debating with myself about medication. These medications are so new and without many long term studies on how they affect our bodies.

I have a hard time setting aside the thought that I may be sacrificing my liver, kidneys or other vital organs or function for a "maybe" something will help or slow down.

I feel a certain amount of stress when trying to make an informed decision. Its even harder when you can't find information about the whats in the meds, how it's made (biologic) seems vague and lets not forget we don't really know how or why a med is working .

I wonder are they giving us dangerous drugs because we expect treatment or because of the placebo effect when we feel we are doing "something"

Who Knows? I do feel that we have to carefully weigh our decisions, I only wish I/we had good info in layman's terms that could help us choose our poison. (sigh)

[marti]

I am currently debating with myself about medication. These medications are so new and without many long term studies on how they affect our bodies.

I have a hard time setting aside the thought that I may be sacrificing my liver, kidneys or other vital organs or function for a "maybe" something will help or slow down.

I feel a certain amount of stress when trying to make an informed decision. Its even harder when you can't find information about the whats in the meds, how it's made (biologic) seems vague and lets not forget we don't really know how or why a med is working .

I wonder are they giving us dangerous drugs because we expect treatment or because of the placebo effect when we feel we are doing "something"

Who Knows? I do feel that we have to carefully weigh our decisions, I only wish I/we had good info in layman's terms that could help us choose our poison. (sigh)

Tia I stopped the Copaxone because I started having strange reactions to it. My neuro believes in "do no harm" and she knows I react strongly to meds so she felt it was ok to suspend the shots. Sometimes I wonder if it was a mistake, but I am fairly stable at 65 years old. We are taking risks no matter what we decide. Some people do very well on the meds. Can't advise you on this.

[schmangi]

I have a hard time setting aside the thought that I may be sacrificing my liver, kidneys or other vital organs or function for a "maybe" something will help or slow down.

My thoughts exactly. I've been on and off DMTs for 15 years. The side effects are terrible and it really makes me think I am just poisoning my body. The last one made me lose my hair and get neuropathy in both feet. Is it really worth it?

[jreagan70]

Hi dawlfin:

Sometimes "a little knowledge is a dangerous thing". Like a med student that starts to think they have this or that disease- as they learn how to be a doctor. What if it is all in my head?

I think you've done an excellent job of summing up your own issue. What your post says is that, with only limited knowledge and limited understanding, you've developed your own idea of what you think MS is, and that at times you don't believe you have MS because your case doesn't match up with your imagined idea of what MS is.

You're judging whether or not you have MS based on criteria that you made up yourself rather than criteria developed by 100 years of medical science and technology. It's easy to go in and out of denial when you're making up your own rules as you go along.

What if it is all in my head?

It's always interesting to me that someone can have so little confidence that they don't don't even trust their own feelings and experiences. Remembering what sent you to the neurologist in the first place, and knowing what you know about your MRIs and your symptoms, why would you think that's possible?

[Thinkimjob]

My MRIs have scarcely changed in 18 years. But I can't walk without a walker anymore.
Don't put too much faith in "no new lesions".

My non-medically-qualified theory is that MS slowly, slowly, slowly strips our nerves of myelin and it is not big enough to "see" as a lesion on an MRI.

Best sign of how things are traveling is increase/ stability in disability.

Drugs slow the process down, (or maybe it just stops for a few lucky people at some point).

You may as well take the drugs. All of them kinda suck, but I do believe they buy you time.

[dawlfin]

Actually no, respectfully, no

Hi dawlfin:



I think you've done an excellent job of summing up your own issue. What your post says is that, with only limited knowledge and limited understanding, you've developed your own idea of what you think MS is, and that at times you don't believe you have MS because your case doesn't match up with your imagined idea of what MS is.

You're judging whether or not you have MS based on criteria that you made up yourself rather than criteria developed by 100 years of medical science and technology. It's easy to go in and out of denial when you're making up your own rules as you go along.


It's always interesting to me that someone can have so little confidence that they don't don't even trust their own feelings and experiences. Remembering what sent you to the neurologist in the first place, and knowing what you know about your MRIs and your symptoms, why would you think that's possible?

Because I know the MCDONALD CRITERIA, last updated in 2010, -the criteria that Neurologists use to diagnose it. I have been told that (several neuros) I have no new lesions, in years, many years. I have never had enhancing lesions. This is why. My neurological exams have been perplexing, and thought to(possibly) be explained by disc disease.
I have never had optic neuritis, which is pretty common.

I read scientific journals, I am a thoroughly educated patient.
I had my first MRI when I was having face pain. They found lesions then and said they were from migraines and / or a bout of eencephalitis. These have not changed.

[dawlfin]

My MRIs have scarcely changed in 18 years. But I can't walk without a walker anymore.
Don't put too much faith in "no new lesions".

My non-medically-qualified theory is that MS slowly, slowly, slowly strips our nerves of myelin and it is not big enough to "see" as a lesion on an MRI.

Best sign of how things are traveling is increase/ stability in disability.

Drugs slow the process down, (or maybe it just stops for a few lucky people at some point).

You may as well take the drugs. All of them kinda suck, but I do believe they buy you time.

Thanks for an honest and still kind answer.I need stuff clocked into me sometimes. But I have never had a disability, so I think it is what makes me question things.

I have sensory issues - pain, muscles twitches, weird hot/ cold, vibration , sunburn sensations, but no numbness. I feel I don't qualify with these.

If I had trouble walking I would inject whatever they tell me to!!
I guess I shouldn't wait until something big and scary happens.
-Dawl

[jreagan70]

Hi dawlfin:

Again, I think you've done an excellent job of summing up your own issue. And I think your experience can be very helpful for folks who find that they keep second-guessing themselves.

Your thread title of "denial or reality" shows how easy denial can be and how hard it can be to tell what reality is when the rules of reality keep changing. In your first post, reality was:

Sometimes "a little knowledge is a dangerous thing". Like a med student that starts to think they have this or that disease- as they learn how to be a doctor. What if it is all in my head?

and the next time, reality is:

I read scientific journals, I am a thoroughly educated patient.

In your first post, reality was:

What if the lesions are from a long ago, mild, encephalitis ,or migraines? What if my pain can be explained by shingles type flairs that never have a rash?

The next time, reality was:

They found lesions then and said they were from migraines and / or a bout of eencephalitis.

Denial can start easily, and come and go, when the rules keep changing.

Denial is also easy when someone has preconceived notions of what a disease should be like. And it's particularly easy when the condition doesn't have obvious outward signs. Perhaps one of the most common diseases that people go into denial about is diabetes. People say things like, "No, I can't have diabetes because I don't eat a lot of sugar." There's also, "I can't have high blood pressure because I don't have headaches."

You've told us the reasons you've chosen to use as criteria for whether or not you have MS, because you've brought them up twice: you've never had optic neuritis, and your lesions haven't changed. That says that your idea of MS means that, if you were to have MS, then you should have had ON and your lesions should have changed over time. And because neither has happened you think you can't have MS.

The issue here isn't even whether you do or don't have MS, but in how hard it is to figure it out if the rules and the criteria are arbitrary and changeable.

Denial or reality? Denial isn't unexpected when someone already has the answers they seek but discards them, and keeps changing the rules of reality, because the answers are too uncomfortable to think about. And there's a valuable lesson in that for everyone.

[dawlfin]

Thanks for the reality check, even if I don't like it, lol.

Now I get what you were trying to say.

I have my own idea of what MS does to people. And I feel like mine is so mild, that it could be disc disease, which is not as scary to me as MS, I guess.

When I question the diagnosis, it is because there are no changes in space and time on MRI, for diagnosis.

I give subjective symptoms, but the doc needs to be objective, and some docs are good at that, and others are

I have had both answers:

No you do not have MS.
Yes you do have MS.

-Dawl