GI symptoms related to MS?

[saywhat]

I had a 9mm enhanced lesion on my brainstem back in Sept. So naturally, I am very hyper-sensitive about new symptoms related to my breathing, heart rate, digestion, etc.

Yesterday I saw the neuro's PA (flaring again) I told her that I suddenly developed horrid heartburn, stomach pain, and constipation. Horrible. I waited it out for 3 weeks, then called the neuro and left a message. When I heard back it was "Go see your PCP, then call us back ASAP."

That was right before the holidays, so it was a while before I got in with my PCP. She diagnosed me with reflux, ulcers, and irritable bowel. Really? All of this starting in 1 day?

When I brought it up with the PA she was a JERK, told me that GI symptoms need to be dealt with by the primary care doctor. NOT them. I asked her even if I have a 9mm lesion on my brainstem? She said yes. Was pretty irritated that I would even bother their office over GI symptoms.

SO WTF? Does this really have NOTHING to do with the MS?

Meawhile, I'm receiving solumedrol for weakness symptoms and after 1 dose the heartburn and stomach pain that has been keeping me awake at night for 5+ weeks, is GONE.

I just want to cry. I feel like the MS clinic doesn't give a crap, I feel like they think I'm making all of this up. They told me to call with new symptoms, yet lecture me when I do. I can never get ahold of anybody when I have questions. Obviously the Avonex isn't working if I'm relapsing this quickly. But they didn't seem to care, or want to up my appointment from 4 weeks, or anything. Just, "call if you still don't feel better after 2 weeks" (but you won't be able to get ahold of anybody anyway, and when you do a month later, we'll just tell you to see your PCP.)

F Multiple Sclerosis. I HATE THIS DISEASE!!!!!

My Avonex is due tonight and I just want to throw it against the wall. I just want to surrender to the stupid disease. Just surrender. Stop the meds, stop caring about symptoms, stop getting steroids, and just live my life. The life that I had before all of this. *cry*

Your gi symptoms most likely aren't ms related, but I could be wrong there and I'll let one of the long term posters answer that. Second, steroids reduce inflammation and that's not limited to the brain and spine, it could well have given you relief from the gi symptoms and still have nothing to do with ms. Third, most of the dmd's take around six months to reach full effectiveness, so if you've been on it less than six months, its probably too soon to call it a failure.

If you're feeling like the ms clinic isn't responsive to you, it might be time to start looking for a new neuro.

Sorry, I meant to say ALL of your gi symptoms. It wouldn't hurt to ask for a referral to a gi specialist.

[sportsfan]

Having MS doesn't mean that every new health symptom is related to or caused by MS. We all need to conscience of all new things that happen with our health so we can be treated accordingly but having MS doesn't mean we can and should pin everything on that.

[Redwings]

Hi shutterbug:
Sorry to hear of your troubles. From your post, I'm getting the impression that your encounter with your MS clinic didn't go smoothly because of some missteps on both sides. It sounds like maybe your PA didn't communicate as well as she might have, and that you have some misconceptions about how specialists function.

First, it is possible that your GI problems had nothing to do with MS and your large brainstem lesion, and that it truly was coincidental. Poster starry1 brings up a valid point that the steroid treatment could have reduced inflammation in your GI tract that has no connection to your MS. Remember that, while MS can cause problems with GI function, it doesn't directly cause inflammation in the GI tract. MS in a disease of the central nervous sytem, not of the GI tract. It's possible that you assumed that, since the steroids you took for GI weakness also helped the GI trouble, the GI trouble was caused by the same condition you took the steroids for -- MS. That isn't necessarily true.

Even assuming that MS was the cause of your GI trouble, that doesn't make the neurologist responsible for treating it. MS can manifest all over the body, but that doesn't mean that the neurology specialist then becomes responsible for treating the entire body, as a gneralist would. It's still customary for the neurologist to refer to the other appropriate specialistw to treat the part of the body being affected by MS.

For example, lupus, which is treated by rheumatology, often affects kidney function. But rheumatologists aren't nephrologists, so they refer the patient to nephrology to manage the kidney issues. Sarcoidosis, which is also treated by rheumatologists, can affect lung function. But rheumatologists aren't pulmanologists, so they refer those patients to pulmanology to manage the lung issues. MS can cause uveitis and optic neuritis, but neurologists aren't eye doctors, so they (should) refer those patients to ophthalmology to manage eye/vision issues.

So even if your Gi troubles were the result of MS, neurologists aren't gastroenterologists, so they refer to the appropriate specialists to manage GI issues. In your case, the PA sent you back to your PCP to get that done. That's kind of the whole point of specialties -- to handle their own specialty and refer to other specialists or PCPs for anything else.

A 9mm brainstem lesion can contribute to a variety of different issues, but it isn't safe for you to assume that every symptom you develop is from MS and can, or should, be treated with steroids. There are some conditions that shouldn't be treated with steroids, which is one reason why neurologists refer to the appropriate specialists for workup. If you have GI symptoms again, the appropriate approach is not to assume that the cause is MS and go to the neurologist for steroids, but instead to go to a GI specialist (through your PCP, if necessary) for a proper workup.

Nothing you've told us indicates that the neurology clinic did anything wrong in your case. Perhaps the PA didn't explain things very well, but it's apparent that your, frankly, unrealistic expectations led you to think you were somehow being mismanaged or blown off. I'm sure it didn't help that you'd already been suffering for 3 weeks before you called your neuro.

I have to agree with the other posters. If your neuro clinic hasn't been responsive to you, it's worth looking for a new neuro who is. I've had bad neurologists, and everything was a struggle. But when I found the right doctors, it was like the weight of the world had been lifted and I could breathe again. If you can find the right doctor, it can be the same for you.

[rdmc]

You have a lesion in your brainstem...where in your brainstem? A medulla lesion can cause nausea and vomiting.
It can also cause motility problems? but as was mentioned steroids can have a similar effect.

As far as who handles what...my BP is affected by a brainstem lesion, but it's my GP who handles the medications for that.

I have a medulla lesion that size (which was recently "discovered") and like Redwings said, they can play havoc in so many ways that you might need to go beyond your GP if you aren't getting better from your symptoms...I agree with Redwings, a GI doctor might be more effective at treating your problems (I was sent to a hypertension specialist...but he gave up on me, LOL, because of the difficulty in controlling my fluctuating BP, so my GP is the best guy for me.). I'm interested to know how the PCP diagnosed you with those things...did they run tests?

Anyhoo...I empathize, but the best thing you can do is get informed and start questioning the med decisions...ie, why continue steroids when you're having such severe stomach problems that aren't being relieved.

Hope you get some relief soon...hang in there !

[rdmc]

I just reread your post...are you saying the steroids eliminated the heartburn? If so I totally read it wrong. If the steroids are helping, not hurting your stomach then that's a good thing, isn't it?

[saywhat]

Thanks, all for the honest replies. It's a 9mm pontine lesion that I have.

It's only been 4-5 months since all of this started, I guess it's still a huge load of emotional stress/shock/panic. I just want somebody to fix me. Which, obviously, can't happen. Blah.

And good point about the steroids reducing the inflammation in my stomach. The stomach pain/heartburn was back this morning, which I guess is to be expected since solumedrol has always torn my stomach up in the past.

I hate MS. From this point on, I'm just going to go through my PCP with any/all symptoms. I am so sick of this stupid disease.

The part that confuses me is when the neuro/PA/nurse/ anybody at that clinic tells me "Call if you get new or worsening symptoms" but then leave me to google and visit online forums to find out exactly what kind of worsening, what kind of new symptoms, etc. She just talked to me like I was a freak for even CONSIDERING that they might help me with "new symptoms."

I would find a new neuro, but this is the only MS specialist neuro in the area.

I'm seriously ready to just be done listening to my body.

I wouldn't be so upset if it wouldn't have taken intense pushing on FIVE different doctors to get somebody to listen to me that SOMETHING WAS VERY WRONG in my body when this entire thing first happened. Every single doctor blew me off, told me my symptoms were swelling from my c-spine surgery. I knew they weren't. They were very different, and much more intense.

Only because I worked in the ER and knew the docs, was I able to finally convince a doctor to order a c-spine MRI to "ease my mind" only to find a massive lesion (that was NOT there pre-surgery) on my pons, and one at C2. Then all of the sudden I'm being admitted for 5 days of solumedrol because I INSISTED on an MRI.

Huh, imagine that. I KNEW something was WRONG in my body. I wasn't making the symptoms up. I feel like I do nothing but advocate and push for myself and my health lately, and honestly, I'm at the point where I'm too **** exhausted to keep doing it. I don't have help, I have a 2 year old, I cannot physically arrange a babysitter, get us both dressed, fed, packed up, drop her off, get myself to the doctor, get myself to the pharmacy, etc. I cannot physically keep doing it!!! And nobody gives a ****. They just tell me to go see another doctor.

Sorry, that turned into a big long vent. I just want my life back. UGH!!!!! I want to be able to do more than just get my kid more processed crap to eat and barely keep us dressed and to the bathroom.