Do you ever forget a problem might be M.S?

[spoiledbrat]

Or do you ever blame things on M.S. that might be more serious? Well here is an interesting situation and I am curious if others have done this.

I will make a long story short.
Tuesday morning I experienced almost all the symptom of a woman getting a heart attack. I went to the doctor today and I found myself saying, Well, that could have been M.S." for each symptom. I said each symptom followed by those words or similar variations. For example, when I mentioned a tightness and slight pain in my chest, I mentioned that it could be the M.S. hug. When I said I have pain in my left arm, I followed with "But it did feel like the same pain I get from M.S"

How do we know when to blame M.S. or when to worry if it might be something else?

[jojo18]

if it is one symptom, ill blame MS. if it is a constellation of symptoms as you explained, ill think that it may be something else.

yes, it could have been MS. but it could have been a heart attack, and are you willing to bet your life on it being MS. next time (hopefully not) it happens, i would call 911 after taking an asprin

[spoiledbrat]

Well I did go to my primary doctor because I did fear a heart complication and wanted a full work up. However, my doctor said it on his own. He is positive it is not heart failure, but it could have been a silent heart attack. So he is scheduling a cardiologist appointment for me. I thought heart attack first and M.S. second.

[rdmc]

Good topic. I've mentioned this before, but on any given day, probably a lot of us should be at the ER because if you read those posters on signs of a stroke...we're having one

I read them in the doctor's office, and point out to my husband, well looks like I'm having a stroke...I have slurred speech, can't raise one arm above my head, have a crooked smile, and tingling in a limb.

Of course, I know it's just the MS. But the truth is, most of us deal with such odd sensations, that if they were happening to a "normal" person (I read on wheelchairkamikaze blog the other day that some MSers refer to normal people as Muggles, LOL)...anyhoo, the point is if they were feeling in their body what we were feeling they'd be living in the ER...because it's just so strange.

I do chalk everything up to MS, for the most part. And things I didn't think were MS, after all, have turned out to be MS (like my erratic BP), so I guess I'll continue to say, "It's just MS." Maybe it's a mistake, in which case they can write on my tombstone, "She thought it was her MS."

[spoiledbrat]

Can not stop laughing!

Good topic. I've mentioned this before, but on any given day, probably a lot of us should be at the ER because if you read those posters on signs of a stroke...we're having one........

This was sooo funny! I am saving this one for a good picker upper in the future!

But you are so right, those darn muggles would not be able to handle it HA!

I am now curious however, what do you mean by erratic BP caused by M.S. I know it appears obvious, however I am wondering if that is common.

[rdmc]

I am now curious however, what do you mean by erratic BP caused by M.S. I know it appears obvious, however I am wondering if that is common.

Reader's Digest edition...started having extreme spikes in BP...I could feel them, flushing, head pressure, tachycardia, etc. Wore a 24 hour bp monitor, most of the time regular, but spikes of 210/110 at random times, even when sleeping. No BP med seemed to help, would lower it too much most of the time and still not control the spikes...started having severe cranial nerve problems, diplopia, and micturation issues at the same time, so they took a close look at my medulla and found a large lesion.

lesions in that area can evidently affect bp, heart rate , cranial nerves, and urination...so MS specialist blames all these problems on that lesion. BP is now controlled on an as needed basis...I have fast acting bp pills I pop when it takes off. They say I need Botox in my tongue to help with the cranial nerve problem...I'm putting that off...seems scary to me. Self cathing seems to have solved the urinary issue, and prisms correct the Diplopia...so things are being controlled at least for now.

[spoiledbrat]

Reader's Digest edition...started having extreme spikes in BP...I could feel them, flushing, head pressure, tachycardia, etc....

I would love to find that article. I need to find it. I have the same occurrences. Apparently, looking at the medulla is something relatively new.

I had received an e-mail from one of the M.S. YouTube channels about it the other day and researched it further. They were stating that they typically did not look at that area of the brain and focused on the cerebellum. It was also the reason why certain interferon drugs were not working for certain people.

Luckily, I have a MRI coming up soon and I am going to address that as well. Even Gilenya has started to no longer work. It was great in the beginning, but now I am starting to have increased relapses.

I would put off the botox also. I was reading that it still is not a definite fix. Actually, I would put it off just because the thought of botox injection in my tongue just sounds odd HA!

Do you feel better now overall since they have found the problem and addressed them?

[rdmc]

Do you feel better now overall since they have found the problem and addressed them?

Most definitely feel better. I thought I was going nuts...especially with the bp issue. Once I wore the monitor I knew it was a real problem, but the BP specialist had no answers or solutions.

they looked for a pheo ( a tumor on the adrenal glands that can cause similar symptoms but didn't find one). My first MRI in Oct. showed the same old, same old...then I insisted they repeat it, and voila the one in Jan. showed the lesion, and surprise , surprise...when they went back and looked closely at that area in the OCt. MRI it was there as well...but the Jan one was much clearer because they were looking especially at that area.

The medulla is a small area and even a small lesion can cause symptoms. larger lesions can cause seemingly unrelated symptoms, yet all be caused by a single lesion. Because everything is so compact in that area of the brain.

Intellectually, it's a really interesting area of the brain to look at, and I've found some good articles about how they have overlooked that area and it's relation to some symptoms.

**Post edited by Moderator to break into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[MarkLavelle]

... do you ever blame things on M.S. that might be more serious?

Oh boy, did I ever! And so did my PCP...

Last year, 3 months after my dx, I experienced a few irregular right side peripheral distortions (AKA "hallucinations") one Sunday that came and went, but didn't affect reading or anything important (but increased every day for the next week). I had a fit-for-surgery exam a couple of days later (spine stuff), and my PCP thought it was likely to be ON and sent me to an ophthalmologist.

The eye doc didn't see ON, but a field test showed that I'd developed homonymous hemianopia (blind on the right side in both eyes). Back to the MS clinic and an MRI, and (3 weeks after onset) I was told I'd had a stroke!

I was extremely lucky to recover my vision a little over a month after onset. Now I'm a lot more sensitized to the possibility of another stroke and other non-MS explanations for new sx...

(and I found the stroke poster story funny, too!)

[spoiledbrat]

Oh boy, did I ever! And so did my PCP...

Wow Mark! At least now you have learned not to take every symptom lightly or blame the M.S. For me, now I am now waiting to see the cardiologist. I believe that will be the difference between me blaming M.S. still or realizing M.S. is not a barrier against other problems HA!

Actually, I still forget that M.S. causes many symptoms and I will blame "life" or "I must have slept wrong or something" on various symptoms. The burning I would get in my shoulder I had previously thought was just because of me holding my arm the wrong way. I thought that for many years, then my neuro said that is M.S. I could have been reliving the pain when I was 22 years old instead of waiting until I was 27 HA!

[Sequoia]

I'm glad you're getting your heart checked out, spoiledbrat!

I had a pontine stroke in early March, and since it affected my left side (my weak side due to MS) at first we thought it was "just" an exacerbation. We didn't get it checked out until two days later, which was past the window for intervention for a stroke, so now I'm fighting my way back slooowly from considerable damage.

[rdmc]

I'm glad you're getting your heart checked out, spoiledbrat!

I had a pontine stroke in early March, and since it affected my left side (my weak side due to MS) at first we thought it was "just" an exacerbation. We didn't get it checked out until two days later, which was past the window for intervention for a stroke, so now I'm fighting my way back slooowly from considerable damage.

Hey Sequoia,

Glad to hear that you're having some recovery, must be hard and as you said, slow.

It's such a hard thing...most of us would never know till after the fact if we had a stroke or not. What made you suspect it was a stroke? I think the window for intervention is something like 4 hours, isn't it? I can't imagine how I'd tell in that time frame if the increased symtpoms were something other than MS, especially if it affected a "part" of me that already had symtpoms.

So now you and Mark have both had a similar experience....stroke that was at first assumed to be MS symptoms.

I've been in the ER quite a few times and even the ER folks chalk stuff up to MS once they know that's your diagnosis. I had to go have my BP monitored a few weeks ago when it wouldn't settle down, or respond to the med, and before I left they did run a CAT scan of my head, but I was just put in a bed with a bp monitor for about 4 or 5 hours while they monitored my bp...nothing else was done, they just assumed it was the MS, even though I was having some increased MS symptoms as well.

Any suggestions for the rest of us as to how you'd handle the situation differently or how you'd recognize the difference yourself?

[Sequoia]

Having had a stroke already, now I'd go to the ER immediately for any dramatically worsening left-side symptoms. I don't know how I could have known before the first stroke, though, that it wasn't MS-related after all. I just had a "feeling" that something (other than MS) was wrong...I don't know how else to describe it.

My neurologist did say that at this point in my MS progression I'm unlikely to have any major new symptoms, so I should assume that anything "big" has another cause.

[MarkLavelle]

Any suggestions for the rest of us as to how you'd handle the situation differently or how you'd recognize the difference yourself?

I've been asking myself the same Q for a few months...

I have a long history of minimizing sx, partly because I'm not very 'body-aware' and partly because my instinctual response to any impediment is to push through (have I mentioned denial? ).

In a way, the Q actually torments me -- I know for a fact that I've minimized my own problems, but I've seen copious examples of folks who 'medicalized' every little thing.

I guess I'll be playing it by ear, but I think I've got a few new guidelines:
* If I suddenly feel unable to do anything, call the neuro and go to the ER.
* If there is any sudden change to my vision, get to the ophthalmologist (not neuro) ASAP.

Beyond that, all I can say is that I'm a lot more likely to see a doc about new sx than ever. But I can't figure how my response to the stroke would have been different -- it just didn't feel "sudden."

[Thinkimjob]

I'm so pleased you're on the mend, Sequoia.