Could it be MS?

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LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 4/22/2014 7:30 PM (GMT -6)   
Hi all.
Im new to the MS side but a frequent over in the Ulcerative colitis area as i have UC. Im a 26 year old male who is very healthy. Anyway onto my story. Im hoping some folks Dx'd with MS can help. about 2 months ago I started feeling dizzy, like i was on an elevator, also, this may sound funny,but i felt really stupid, mixing up dates, forgetful, ect, in addition i was also very tired. and my eyelids were twitching. I went and saw my PCP who recommended i see a nureo. So i did. I went over my symptoms with him and he decided to do a physical test on me. He checked all of my reflexes and whatnot.Everything was fine. After he could tell i was nervous as i thought i had MS. He decided to send me for an MRI w/o contrast and an EEG to quell my nerves. about a week after the test i went back to his office and he said there was no findings in either and i was given the all clear. what a relief i thought. How ever now i have new eye floaters, im sooo darn tired all the time, and tonight my left arm just doesn't feel right kind of like the skin is dried out. also i feel really zoned out, like i will blank stare. and the eyelid twitches are still here... I have never felt this way before and to be honest im very nervous that I could have MS. i dont know if this is anxiety or MS. someone chime in here. Thanks

fnfiacco
Regular Member


Date Joined Apr 2014
Total Posts : 66
   Posted 4/23/2014 9:31 AM (GMT -6)   
I dont think so. the eye lid twitching is very normal especially if your exhausted. also with ms you would have more numbing and tingling sensations that are very frequent or last for long periods of time. also you would have double blurry vision

LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 4/23/2014 12:52 PM (GMT -6)   
Thanks for the reply. I actually went back to the nuero today. I explained my symptoms, he did a physical exam and once again reassured me that i am ok. He did blood work to check for lymes and some other things, he also gave me an RX for a c-spine MRI w/o contrast, again just to put me at ease as he feels i do not have MS or any symptoms from it. I explained to him that i thought it may be anxiety but he says he doesn't like just dx'ing folks with anxiety as he said its a "waste basket dx alot of times". Meaning docs just say it when they are stumped and have nothing left to tell you.I have an appt for the MRI on Monday at 6pm. ill keep those interested posted.
24 Male DX at age 12 w/ UC
Remicade 7.5kg per mg
zoloft 100mg for anxiety

NEVER FORGET 9/11/01 343 R.I.P.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 4/24/2014 7:43 AM (GMT -6)   
MS symptoms can be extremely varied. It all depends upon what part of your brain has been damaged. My presenting symptom was vertigo. I had no numbness or vision issues. I had an MRI and a lumbar puncture and was diagnosed in a few weeks.

You need to see the doctor who treats your Ulcerative Colitis; or the doctor who prescribed the Remicade. Remicade can cause MS type symptoms. On rare occasions, it has been blamed for triggering the onset of MS. Many remicade patients who experience neurological symptoms, return to normal once stopping remicade.

Please discuss this with your doctor. Best of luck to you. Please keep us posted!!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 4/25/2014 10:46 PM (GMT -6)   
The thing is i have been on the remicade for almost 5 years. I would assume(should never assume) that i would have felt neurological symptoms a long time ago if indeed it was from the remicade. I have seen the doc who gives me the remicade and she did not believe it has anything to do with it. I have read that in rare cases remicade has caused MS which is why I am pretty darn nervous. Even though i had a clean brain MRI i guess i could still have MS but wouldn't that MRI have seen something if i am having nuero symptoms?
26 Male DX at age 12 w/ UC
Remicade 7.5kg per mg
zoloft 100mg for anxiety

NEVER FORGET 9/11/01 343 R.I.P.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 4/26/2014 9:27 AM (GMT -6)   
MS doesn't always show up right away on an MRI. You usually won't get an MS diagnosis until it does. I know of a couple people on here that had neuro symptoms for a year or more and then finally the dreaded lesions appeared.

I am glad you've told your prescribing doctor. I guess it's a matter of watch and wait. It does seem unlikely the remicade is causing this since you've been on it for so long. Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 4/26/2014 9:47 AM (GMT -6)   
The more i read up the less i feel i have MS. My symptoms come and go very quickly. The dizziness isn't really a true dizziness. I'm wondering if i have an inner ear issue. My ears are always popping/ feeling full. I guess this is a matter of watch and wait like you said. I plan on seeing an ENT to have this checked.
26 Male DX at age 12 w/ UC
Remicade 7.5kg per mg
zoloft 100mg for anxiety

NEVER FORGET 9/11/01 343 R.I.P.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 4/27/2014 7:14 PM (GMT -6)   
This is good thinking. I hope it is an ear issue that can be easily treated.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 4/27/2014 7:52 PM (GMT -6)   
Thanks Gretchen. I'll update when i know. I also have my c spine MRI tomorrow after work.
26 Male DX at age 12 w/ UC
Remicade 7.5kg per mg
zoloft 100mg for anxiety

NEVER FORGET 9/11/01 343 R.I.P.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 4/27/2014 9:59 PM (GMT -6)   
Thank you! Yes, please keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 5/3/2014 5:07 PM (GMT -6)   
Update. C spine MRI showed no lesions. Just some disc issues and slight spinal stenosis (***). I'm only 26 lol. I guess thats good news though. Onto the blood work. Everything looked good, he said the lunes came back a little high? Whatever the hell that means but he stated he doesn't think I have lymes. Lately i have been having some pretty bad joint/muscle pains in my legs. However i do have a herniated disc in l4-5 which it could be from( have had that for ages). ENT did some pretty thorough tests but everything came back good. I don't know anymore. The dizziness feeling has subsided. But i still feel off sometimes. Maybe it's anxiety. Maybe I need to look into lymes. After further thought this all started one day after out of the blue i got sick. Had a 102 fever with aches and was very weak. Went away after 24 hours but I have never felt right since. Mind blown.....

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 5/4/2014 10:00 AM (GMT -6)   
At least you have something to work with. I would aggressively treat the back issues. And if you at all suspect Lyme disease then post on our Lyme board. That is a very active board and they'd love to help.

I'm glad that some symptoms seem to be resolving. You are always welcome here to post. Keep us informed.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 5/26/2014 11:55 PM (GMT -6)   
Hello again. I'm back. Update. Got some Lyme bloodwork done. I show positive for some Lyme antibodies but as per the cdc I'm negative. My doc started me on amox @ 875 2x daily to see if anything changes. I've been having weird symptoms. I get this really bad fatigue that comes and goes all day. The eye floaters are still here and the slight dizziness still lingers. No numbness but i do on occasion get the slightest pins feeling in my left hand but it subsides rather quickly. Basically another thing that comes and goes all day long. I have noticed that I get this weird trembling feeling in my arms and legs that again comes and goes throughout the day. Idk what to make of all of this. I've been on the amox for a few days and still feel pretty crappy. I'm just unsure of were to go from here. Should I call my nuero and ask for another MRI ? Does this even sound like ms?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 5/27/2014 8:21 AM (GMT -6)   
This sounds like Lyme. Have you posted on the Lyme board? They are a wealth of information over there.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

LMFD296
Regular Member


Date Joined Dec 2009
Total Posts : 153
   Posted 5/29/2014 9:17 PM (GMT -6)   
I have. I'm going to see a Lyme literate md tomorrow. How ever since yesterday afternoon i have a sunburnt feeling on my butt cheek and the muscle feels sore behind it... I'm worried. What if it's not Lyme?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 5/30/2014 6:33 AM (GMT -6)   
Take it easy. See what the Lyme doctor says. But also remember, this is your body. Of you aren't happy with the course of treatment or think you need a second (3rd, 4th) opinion then go get one! You do have to be your own advocate. Best of luck to you! I hope so much that you respond to Lyme treatment.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Post Edited (Gretchen1) : 5/30/2014 6:21:58 AM (GMT-6)


MaggieMc
Regular Member


Date Joined Mar 2014
Total Posts : 24
   Posted 6/1/2014 4:09 PM (GMT -6)   
LMFD. Have u had blood work and ur inflammatory factor checked? If u don't get answers, u may want 2 consider c n a rheumatologist. I have Sjogrens and have these sumptoms like the sunburn, numbing , eye problems, dizziness and dryness. But my dryness is severe. Consider the blood work to check for autoimmune diseases. Sjogrens doesn't necessary always show up so I have been told doc can order lip biopsy. Just a thought. The burning is especially bad if I get over-heated or go n the sun or after exercise.
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