Just feel lost....

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beannie
Regular Member


Date Joined Jun 2006
Total Posts : 50
   Posted 6/3/2006 5:36 AM (GMT -6)   
confused  Hi,
       I am new here and just have some questions. I am in my late 40's, and all through my 20's I had numbness and tingling in hands and face and elbow. As I got into my 30's things started to change. I was getting very tired, started having pains in my legs and stuff like that. Then in 2001 I became so fatigued that I hardly moved off the couch. I had numbness in my face, and also started getting cramps in my legs and feet really bad. I had an MRI which they said I had some arthritis in my neck. Then in 2004, I had another one, this time I had six white spots on my brain, even I could see them on the ex-ray. The radiologist said it looked like a mild case of MS. The problem is the Neuro did not want to lable me with it, she said she would treat any symtoms I had. I am not on any meds, but now have been having these pains in my stomach like bloating and constipation. I have had a colonoscopy everything is good, had an upper GI also good. Went for pap smear and vaginal ultrasound also good. I have been feeling terrible with this bloating and feeling fatigued but no one knows whats up. I am so frustrated with this whole thing and dont know what to do. I do believe I have all the symptoms of MS. I also had two bouts of optic neuritis about a year ago. Any ideas????? Thanks

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/3/2006 6:38 AM (GMT -6)   

It seems to me that you need to find a new neuro. Or perhaps a primary care physician who will not be afraid to diagnose the MS, and get you started on one of the disease-modifying treatments available.  2004 is a pretty long time ago --  I wasn't clear by your post if you've seen a neuro since then?

You say you had two bouts of optic neuritis...did you see an ophthamologist to confirm that, and does your neuro know about that? Sometimes they won't diagnose MS at the first visit, but when the patient calls or comes back in with new symptoms -- like optic neuritis -- then they're ready to move forward.

It might be time to get new MRI's, see if there are more lesions, or lesions in different areas, and then press for specific treatment (Avonex, Betaseron, Rebif, or Copaxone).

As for the bloating and constipation -- are you indeed constipated? This means: are your stools hard, in small balls, painful to pass?  Or is it more that your bowels are sluggish -- you don't have daily bowel movements, or even bowel movements every couple of days...but when you do, they are loose; formed, but loose?  The sluggish bowels are another possible symptom of MS (although there are other causes, too..but since you had the colonoscopy, most of that has been ruled out, or at least checked for.)  You should probably tell your neuro about this, too.

If you are OK with your current neuro, then an appointment is in order.  Get the records from the eye doctor about the ON, and talk with the neuro about that and the bowel problems, and maybe he'll take action.

But indeed if you're not confident in him, taking all this to a new neuro, and getting new and current MRI's, might be the best.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


beannie
Regular Member


Date Joined Jun 2006
Total Posts : 50
   Posted 6/3/2006 8:58 AM (GMT -6)   
Thank you for responding.....Yes I really do think I need a new neuro, she seems a little flaky. I would say I am not constipated, although have been many times in the past, but now it just seems very sluggish, I thought maybe thats why I feel so bloated. I have had myself with so many diseases in my head that I think i'm driving my self crazy. Before my colonoscopy which wasn't that bad to do, just the prep was hell, I thought I had cancer. All I know is I just want some answers, and if I have MS then I will deal with it. I didnt know that sluggish bowels were part of MS. Oh and yes I did see an eye specialist and he did verify that it was ON. I also have a small little twitch in my left index finger, nothing major but its there. Well again thank  you, I have been reading these posts for awhile, it really is such a nice website. Everyone seems so nice, thanks again...

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/3/2006 10:03 AM (GMT -6)   
Yes, the sluggish bowels can cause you to feel bloated. My husband just went through the colonoscopy thing..you're right, the prep is really unpleasant. Probably a good thing to do to be sure there isn't anything wrong there -- and it sounds like there wasn't.

Anyway.. seems like a new neuro and fresh start, might be the way to go. Do remember to tell him/her about the optic neuritis, and now the bowel problems. The twitch finger may...or may not..be related. The hand problem I've experienced have been more a general all-over hand weakness and clumsy fingers, than one particular finger being affected.

But as you'll learn, MS can affect each individual in very individual ways.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 6/3/2006 10:07 PM (GMT -6)   
Hey Beannie

Just wanted to say hey, welcome to the board and to let u know i'm glad u'r here. I hope u can find a new neuro and get some answers soon. Please keep us updated to u'r progress and how u'r doing. We all care very much. Best wishes to u.

rhonda

Neurotransmissing
Veteran Member


Date Joined Dec 2005
Total Posts : 952
   Posted 6/4/2006 7:07 AM (GMT -6)   

 


~ Prayers & Shares ~
Finally, whatever is true, noble, right, pure, lovely, admirable
-  if anything is excellent or praiseworthy -
think about such things. 

Post Edited (Neurotransmissing) : 7/24/2006 12:34:09 AM (GMT-6)


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 6/4/2006 9:52 AM (GMT -6)   
Hi Beannie,

Welcome to the forum! It's great that your neuro is wanting to treat your symptoms, but if you at all uncomfortable with how your present neuro is treating you then by all means seek out a second opinion. It really does sound like you have a lot of things pointing at MS, and there are other tests that can be done to rule it in or out. It surprises me that your current neuro doesn't want to investigate things further considering all the symptoms you are having. Best of luck to you on your search for answers, please come back and let us know if you find out anything.

Kimber
 
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KJW
Regular Member


Date Joined May 2006
Total Posts : 41
   Posted 6/4/2006 4:11 PM (GMT -6)   
Your symptoms could be MS. However, there are other things they could be as well. I would suggest that you go to a good internist and have things check out such as thyroid problems, rheumatological diseases (ie, lupus), vitamin B12 deficiency, etc. All of these things can cause MS like symptoms, including lesions on the MRI. Only after these things have been ruled out would I suggest you seek another neurology opinion.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/4/2006 7:50 PM (GMT -6)   
KJW, I'd concur with you...except for the fact that the original poster reported two confirmed bouts of optic neuritis. That doesn't usually happen with any of the other MS mimics, some of which can indeed cause lesions on the brain. Absent the ON, making sure all those other things are ruled out is an excellent idea.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


KJW
Regular Member


Date Joined May 2006
Total Posts : 41
   Posted 6/4/2006 9:18 PM (GMT -6)   
Well, B12 deficiency and lupus can both cause optic neuritis or optic neuritis like symptoms (although less common). It's also important to know how the optic neuritis was confirmed. Was it by symptoms only, or with visual evoked potentials? I had a blurry vision episode that a neurologist based on symptoms only called optic neuritis. However, testing by an opthamologist determined that it was actually due to corneal irritation from extreme eye dryness (ie, my VEPS were fine but the test for tear production were bad and my cornea didn't look too great). The screening tests for these other diseases are simple and cheap. I just think it's best to rule everything out because one needs to confident in the diagnosis so as to be complient in giving oneself frequent injections.

beannie
Regular Member


Date Joined Jun 2006
Total Posts : 50
   Posted 6/5/2006 4:51 AM (GMT -6)   
hi its beannie, I have had many many different types of tests done over the years. My mother does have a thyroid problem, and I have been checked out almost every year to see if i'm still normal, and I always am. I have been tested for Lupus and it was negative. They have done some tests also to see if I was allergic to wheat, what ever that means. Every time I start feeling bad they run a battery of tests on me and everything is normal, not that its a bad thing, but would love for someone just to say you have, something. My symptoms of ON were pain in the eye, very bad. Then it got really really bloodshot, the doctor told me that it was ON, he gave me some steroids and it cleared up in a few days. I had it again a few months later, this time he told me to go to a specialist, and I did. She also said it was ON, but said not to use steroids because she didnt like them. She gave me another solution and didnt work like the steroids did. She said if I had it again to come back, but luckily I havent had it in two years. I also was tested for Rhuematology problems and negative. Well thank you for your input I appreciate it very much....beannie

Neurotransmissing
Veteran Member


Date Joined Dec 2005
Total Posts : 952
   Posted 6/5/2006 5:35 AM (GMT -6)   


~ Prayers & Shares ~
Finally, whatever is true, noble, right, pure, lovely, admirable
-  if anything is excellent or praiseworthy -
think about such things. 

Post Edited (Neurotransmissing) : 7/24/2006 12:34:30 AM (GMT-6)


BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 6/11/2006 9:56 AM (GMT -6)   
Beannie,
I am going through the dx period right now. In the interm the doctors I have seen have done a ton of tests also. One of the tests was an ultrasound of my belly. They were checking my ovaries and discovered I have gull stones. The gull stones cause pain on my right side under my ribs, it feels like some thing sqeezing me from the inside. This pain starts about an hour after I eat. A while after that my stomach gets bloated and it is very painful. It has also caused more constipation problems for me. My stomach will also hurt more if I eat greasy or spicy foods.

I don't know if these are your symptoms, but it is worth a shot. And it is an easy fix!

Good luck,
Lysha
When everything's coming your way, you're in the wrong lane.


beannie
Regular Member


Date Joined Jun 2006
Total Posts : 50
   Posted 6/11/2006 2:38 PM (GMT -6)   
Thank you, I did have an ultrasound of my stomach they were looking at my ovaries, seemed to be normal. Also had a upper GI and that they said was normal, so would they have seen them with those tests? I kept thinking to myself that they must have missed something, that maybe I have ovarian cancer or something like that. I did have a vaginal ultrasound and that hpv test and all were negative. I guess if I had ovarian cancer something would have come back abnormal dont ya think? It just makes me crazy at night when I am laying in bed thinking about it, and knowing I have to get up early to get my kids off to school....thanks for you input....appreciate it very much...

monlynn
New Member


Date Joined May 2005
Total Posts : 3
   Posted 6/11/2006 4:21 PM (GMT -6)   

Beanie -

After all this time - all the tests - the doctors and specialists - the knowns and the unknowns, it's no wonder you still feel lost.

Please - I pray that you find a board certified neurologist in your area that specializes in diagnosing and treating MS - as well as working with a certified internal medicine physican. Both are needed to help you find your 'new normal' - whatever that might be.

I do believe that today's MRI's are the best and most efficient diagnostic tests available -- along with reviewing your own personal history of medical 'ups and downs' throughout these last years.

RUN - don't walk - to find a neuro who will listen to you -- treat you and your symptoms with respect -- and share their knowledge with you so that you can regain control of your life. You are 'the master and commander' of your life-- stay strong!

MS is not an easy disease to diagnose because it is NOT an 'equal opportunity' ailment....just ask anyone who has been diagnosed in the last 10+ years.

And, if after you've received the 'answer' and it is, indeed, MS -- then instead of feeling lost, embrace the knowledge that you now have the key that will unlock your future so that you can proceed to live your life with purpose, passion and perseverance.

A dis-ease does not define us. MS is NOT a death sentence. When you can finally and truthfully say, "Yes, it's all in my head"....then you can laugh and know that you can and will survive as a fellow traveler along the road of life. As the saying goes, "that which does not destroys us only makes us stronger" is absolutely, undeniably TRUE!

My prayers are with you - know you are loved. Namaste!

Monlynn in Montana


beannie
Regular Member


Date Joined Jun 2006
Total Posts : 50
   Posted 6/11/2006 4:27 PM (GMT -6)   
Thank you that was beautifull written and so well needed for me....thanks again....beannie

beannie
Regular Member


Date Joined Jun 2006
Total Posts : 50
   Posted 6/11/2006 4:32 PM (GMT -6)   
Well if anyone out there does know of a GREAT Neuro, I live in Monmouth County New Jersey. It is Central NJ and close to the shore. Well any input would greatly be appreciated....thanks again
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