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Jessi

Jessi

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I just got back from an appointment with my GI. I don't have to take Asacol anymore! YAY! Less meds are ALWAYS welcome! For now I just get Remicade infusions for maintenance.

But now a new concern ... my doctor set up an appointment for me with neurology for an MS consult. He's mostly concerned about my vision issues (Blurry, light-sensitive, focus probs). But I also have weakness and fatigue, as most of us do anyway with IBD.

He said that it's more than a possibility, because my dad was diagnosed with MS. MS is most likely genetic, so this is probably just a precaution. But I'm still nervous! I don't like the idea of being enclosed for an hour long MRI scan. I'm claustrophobic.

Also, although Remicade is really helping with my UC and arthritis symptoms, it could exacerbate MS symptoms.

My neuro consultation is August 31, then we'll go from there. I guess I really just need some advice or comforting words right now. Is there anybody here that has both IBD and MS? And what meds help you with both?
 
Aw, Jessi.. I didn't know you're claustrophobic. They usually have some music they can play to help you relax. I usually have them put it on so they don't hear me snoring. ;)

I don't think I know anyone with MS. I am sorry that this has become a posibility for you. Be sure to keep us updated after you have your apointment, though.

You seem like a very strong woman. I mean, come on... 5 kids!!
<3
 
I only know one person with MS but she does not have Crohn's. She does take medication and seems to have been doing very well over the years (she's had it for well over 15 years). I very rarely hear about her having issues or acting in anyway but normal. Who knows, maybe you just need glasses and more iron. My vision sounds similar to yours and I need glasses. I'm also almost anemic hence my mentioning iron (but anemia can be caused by a number of issues a blood test can find out if you are anemic). As far as the MRI goes, don't some places give people a sedative when they say they are claustrophobic? I'd ask about it for sure. Maybe scream, cry and grab their shirt and shake them so they give you something. :p
 
CrabbyRelish said:
As far as the MRI goes, don't some places give people a sedative when they say they are claustrophobic? I'd ask about it for sure. Maybe scream, cry and grab their shirt and shake them so they give you something. :p
Click to expand...

I like her idea better than my music!
 
LOL! I love that idea! I sometimes feel like shaking people, and this is a great excuse! I think the music would help me, too.

Thanks for caring! I really appreciate you guys!
 
I am at high risk for MS because I had optic neuritis about 3 years ago. I was in process of diagnosis, but then my mother died and I just didn't want to deal with it.

I've had two MRI's to check for lesions. All came back normal. But during the second MRI I had a panic attack. If you are nervous, ask for a sedative. I definitely will next time I have to do it. (I imagine there will be a next time) I am super young to be dx with MS, soooo who knows.

But I'm colorblind now. I suggest seeing an ophthalmologist to check to see if you have optic neuritis. Usually it heals. But I lost my color vision in that eye. Check it out for sure.
 
I am so sorry to hear of the passing of your mother, dahlface.

I hear that women are usually a lot younger than men when dx'd with MS. How old are you, if you don't mind me asking? I am 35. My dad was almost 40 when he was dx'd.

Are you going to pick up where you left off in your diagnosis process? If we both are dx'd, at least we wouldn't be alone in it. I will get my eyes checked, too. Thanks for the suggestion. I've also heard of a lot of Uveitis cases with IBD.

What meds are you on for your IBD? Sorry, lots of ?'s, but this is kinda scary to face alone, so I'm glad you replied.
 
I am so sorry you are looking at the possibility of an MS diagnosis Jessi. Like you said this is just a precaution, so try not to worry too much leading up to test. I wish I had some advice for you but I do not know anyone with MS.
 
My dad having MS and living with me really helps me to understand the disease. I just don't know what I'll have to do about my meds. As of today, only Remicade, but I'm really hoping for a miracle of miracles that there's a drug I can take that covers both diseases, if I do have MS. I really love the thought of not being a pill popper. I rarely take pain meds or anything for my chronic joint pain. I'm kinda stubborn that way, I guess. But an even better miracle would be that I don't have MS! Wouldn't that be awesome!?

It's just a precaution... I keep telling myself. Do I believe me enough to relax? Almost.
 
Jesi,
I'm 22. And I don't have a dx for IBD yet. Symptoms started two mos. ago and in the middle of tests. And all that waiting nonsense. So I am not on any medication.
Do you have any other symptoms that could be related to MS, migraines, tingling/numbness, nerve pain, etc. MS can effect any part of the central nervous system so the symptoms can be wide.

I know a few people with MS. One of my good friends had to threaten to hold up the MRI clinic with a sawed off shotgun in order to get dx. Her legs had been numb for weeks and no one was paying her any attention. She knew that if she threatened to do it, they would admit her to the mental ward and be legally required to provide healthcare. She ended up in a wheelchair but with treatment, is now out of it. She lives okay with it. She knows when her bad months are and works around it, always in the summer.

I didn't mention my optic neuritis to my GI, so next time I see him, I will tell him about it. I don't know that MS can cause symptoms like IBD, but who knows. I do need to go back to the neurologist, eventually. But I've pushed it to the back of my mind. Except the last few days with a constant migraine. Ouch.

dahlface
 
If you're interested in reading poetry about her experience, please pick up the newly released book Caput Nil: How I won the war and lost my taste for oranges by Lisa Gill. She's a beautiful poet.

I am too! Working on a manuscript, no book... yet!
 
I do have other symptoms. Nerve pain, migraines, tingling, but no numbness other than tips of fingers and toes, clumsiness (gradually getting worse), balance issues, fatigue, lethargy, nervousness, and the eye probs mentioned above, to name a few.

Summers are also hard on me, too, like your friend, but that could also be associated with the IBD. And, no, I don't think that MS can cause IBD symptoms. They're not related, except that they are both autoimmune diseases. My dad has never had issues like my IBD flares. Thank goodness! He is already way too weak to have to deal with that, as well.

If you have neuro issues AND digestive issues, then you could likely be dx'd w/ 2 different things, if at all. Does your GI feel like you have an IBD? I hope you find your answers soon. Not knowing is so difficult!
 
I have those same issues. Do they get worse with heat, ie: hot shower? Mine do. My GI is thinking either IBD or other Auto-Immune. I've lost so much weight and other red flag symptoms so he's worried about it, which is good. I have both endoscopy and colonoscopy in a couple weeks and had a CT scan last week. Haven't eaten in the last 4 days though and too poor to buy any of the otc that were helping a bit. I'm hoping I will get a dx soon. But either way, I'm scared poopless... literally.
 
I understand your fear, but I realized that the prep was the worst part of the colonoscopy. The rest was cake! So try to relax a bit over it, if you can. :)

Yeah, showers are hard on me. I take baths with mild supervision from my hubby. But when I shower, I can't do it alone. I get very dizzy and weak in the steam. I like it hot, by the way, but need my hubby to hold me up. Also, I have to be quick with my washing, so that I can get out of the steam asap! A few times, I have blacked out during showers, so I am very nervous to do it, even with his help. He worries so much over me, so I know I am safe with him, but it's still frustrating and frightening. Are you able to shower on your own still?
 
I've blacked out because of heat. It feels awful, especially because I will run to the bathroom with my bum on the seat and my head under the faucet, trying to cool down. I can shower on my own, but only if it's cool. I love hot showers so it's really not fun for me either.
I'm more afraid of the possible dxs, than the procedures.
 
The dx doesn't scare me so badly, oddly enough. I think it's because I'm already dealing with the symptoms, and the dx is just giving them a title. That's just me, though.
 
I'm just not prepared to be sick, I think. I've ignored my symptoms for so long and I'm still in school. The challenge... I'm not prepared to go through it without a mommy either.
 
LOL! I know it sounds funny, but I wish my mommy was with me, too, whenever I'm sick. And I'm 35 years old!
 
Jessi, I also recommend asking for a sedative for the MRI. I am not generally claustrophobic and I had a panic attack at the one MRI I had. I don't know much about MS, but I hope that the Remicade doesn't make your other symptoms worse, as I know how hard it is to find a good medication to control your IBD.
 
Hi Jessi! I haven't been on much because I've been so busy at school. I sure hope everything goes well, and that the MS screen is negative. I am thinking about you sweetie and will include you in my prayers.
 
I've missed you, Andi! This is a busy time for teachers. I miss teaching even though I know I can't do it right now. I went to my school yesterday to visit my 4th grade teacher friends. It was back-to-school-night, so they all looked fabulous, while I didn't. :rolleyes: It was so good to see them, though! Are you staying well? Excited for new students? When is their 1st day? We are starting our kids on Monday, Aug. 15.
 
Hi Jessi:

Good luck with the MRI---there sure are some good ideas on this thread!

One thing which I'm not sure if the doctors have mentioned peripheral neuropathy as a possible explanation for your symptoms. Peripheral neuropathy is often indicated as something that is conjunctive with Crohn's and mimics a lot of the symptoms of MS.

*If* (and I've got my fingers and toes crossed that they find no lesions or anything else to indicate MS) for some reason they say that you have MS, then it is quite likely that you'll have to give up Remicade, although I'm not entirely sure. Prednisone is a (short-term) treatment for both MS and Crohn's. In addition, drugs like Tysabri (and another one that starts with V, but I can't remember its name right now---it's in Phase III of research and will likely be approved for Crohn's) work for both MS and Crohn's.

Good luck and I await your good news that you don't have MS!

Best wishes,

Kismet
 
Wow! There is another possible explanation for my neuro probs?! Thanks so much for letting me in on that info. My GI hasn't mentioned peripheral neuropathy. I'll look into it.

Thanks again!!
 
Hi Jessi, I really hope all of your problems can be explained away without an MS dx - they are possible IBD symptoms anyway like you said. And I'd hate to see your Infliximab treatment compramised when it's working so well for you!

If you do get bad news though, I'd suggest looking into Low Dose Naltrexone (LDN) (there's a section on it in the treatment forum). Many people are having success with it as a treatment for a number of autoimmune diseases, including Crohn's Disease, Ulcerative Colitis AND MS. I don't think it can be used in conjunction with Infliximab but if for any reason you do have to stop that treatment, then LDN might be something you could try to tackle both conditions.

But I really hope the tests come back negative for MS and you can disregard the above :) Good luck with the MRI, I had one on Monday and really didn't enjoy myself lol - but not because of claustrophobia. I just hate having to lie so still in the same position for so long! I turn over a lot in bed haha. Plus the bowel relaxant and contrast etc gave me the runs for the rest of the day while I was trying to enjoy the Subway I'd been dying for for the 36 hours I wasn't allowed to eat anything! At least you don't have to fast and drink crap when they're scanning your head, how's that for a tiny silver lining :)
 
Please forgive me if someone suggested this already OR you've already had this done. But as you all know, it's SO EASY for people with IBD to become vitamin and mineral deficient. Considering NORMAL people are often deficient, chances are MUCH higher that we are.

I would be sure (if you haven't already) to check your magnesium levels, Vitamin B12 levels, Iron levels, and folate levels at the very least. Every single symptom you mentioned can be accounted for by deficiencies in those, including MS like neurological symptoms. For example, magnesium deficiency symptoms:

Symptoms of magnesium deficiency include: hyperexcitability, muscle weakness and fatigue. Severe magnesium deficiency can cause hypocalcemia, low serum potassium levels (hypokalemia), retention of sodium, low circulating levels of PTH, neurological and muscular symptoms (tremor, muscle spasms, tetany), loss of appetite, nausea, vomiting, personality changes, sensitivity to light, and death from heart failure. Magnesium plays an important role in carbohydrate metabolism and its deficiency may worsen insulin resistance, a condition that often precedes diabetes, or may be a consequence of insulin resistance. Deficiency can cause irregular heart beats.
Click to expand...
And one of the most common causes of Peripheral Neuropathy which was mentioned above is Vitamin B12 deficiency.
 
That is very informative. I appreciate you for letting me know. I have a good B Complex in a pill form here in the house. My husband really benefits from them, but I cannot stomach it. I get nauseated every time, so I've stopped taking them. I've heard of some people who get B shots. I had my blood drawn yesterday at my appt, so I'll find out soon if I'm deficient, and if so, ask for the shots. Again, thanks, David. Great help!
 
David has a very good point. And if they didn't check your blood for those, I would make sure they do!
 
I was recently in the hospital and had a magnesium def. It's no joke. I could barely walk, I was so weak and shaky. And lost 21 lbs. It's something I never would have thought of.
 
have you gone to an eye doctor i could be iritis. My first and majority of my crohn's issues have been in my eyes. iritis can cause blury vision and lots of photo sensitivity and know outward redness that uvitis. Iritis, uvitis, scleritis usually have pain involved but can come on differently for everyone.
 
No eye doctor yet. Think I should go that route before neurology? My GI had his MA set up my neuro appt immediately, as if MS was his only thought.
 
MS Chat

There will be a great MS Chat held tomorrow August 16, 2011 at 6 PM EST. Dr. Jonathan Howard, an attending physician at the NYU multiple sclerosis center will be conducting the chat and will be available to answer questions about MS and how to manage the disease. More information can be found on Med Help. That is medhelp dot com
 
One of the motivations that prompted me to try LDN for my Crohns was that my sister and a close friend from college both developed MS. In researching LDN at the lowdosenaltrexone.org forum, I saw countless posts about people taking it to treat MS. It might be a solution to both issues for you, though I don't have any info on the MS dosage. All I know for certain is that LDN worked wonders for me, and that this November marks the 4th anniversary of it turning my upside down life right side up again, and keeping it that way. I'd not suggesting you stop your current treatment for Crohn's, but if the MS (if it is MS) forces your doctors to question continuing on it, then LDN may be the answer.
 
MS is often undiagnosed Lyme Disease. Since my wife has Lyme Disease, I also know that Lyme depresses the immune system and can result in Crohn's or Crohn's like symptoms.

The easy way to tell the difference between Lyme and MS is to take a natural antibiotic such as Cat's Claw and see if you get Flu like symptoms.

If you do have a Magnesium deficiency, and it sounds like you do, it almost certainly is Lyme Disease and not MS. Lyme depletes Mg very quickly.

Your symptoms are very similar to my wife's symptoms in the beginning. She is doing very well now.

make sure you are treating the right disease, because an immune suppressing medication will allow the Lyme and any other co-infections to run rampant. Do not trust the Lyme tests either. My wife never tested positive although she did have the disease.

You need a clinical diagnosis from an Lyme Literate Medical Doctor (LLMD). Most doctors do not know squat about Lyme Disease.

LDN would be an excellent treatment, for either disease.

Good Luck

Dan
 
Thank you for your thoughts, ideas, advice, and kindness everybody!

Update: I called and cancelled my August 31st appointment. I'm not really sure how wise it is, but I just cannot financially afford to go this route. At least not yet. I do want to look into some of he other things mentioned here. I just hope this doesn't come back to haunt me later by postponing the MRI for now.
 
I am sorry to hear this Jessi. I sure hope you get a chance soon to get checked. Unfortunately, medical expenses are so outrageous here in the US. You are still in my prayers sweetie.
 
I think this month is the hardest month of the year for me. I believe Back To School costs more than Christmas! I'll recover soon, then we'll get done what needs to be done. Thanks for caring.

:hug:
 
:hug:Back to school is the most stressful time of the year. No doubt! I'll take the stress of Christmas any time. LOL! Hang in there, Jessi.
 
Oh my Jessi, you sure have a lot on your plate at the moment...:hug:

I agree with following through on the suggestions that have been made. I would still get the MRI done as soon as finances allow though, just to be on the safe side.

Good luck hun and I hope you get solid answers soon.

Much love, :heart:
Dusty. xxxxxxxx
 

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