new here Extreme fatigue

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sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 6/29/2008 12:03 AM (GMT -6)   
I am new to this area and this week saw a neuro that reviewed my MRI and my MRI from 3 years ago. 3 years ago I was told that white matter disease was nothing to worry about.The reason I went to this new one was because over the past 3 years I have been having over whelming fatigue to the point that my arms and legs feel heavy and it is hard to do anything. Sometimes taking a shower and cleaning up is all I can do. It is life changing. When I wake up I can't wait to take a nap. OKAY so you get I am exhausted LOL. I am a stay at home MOM so going to work wasn't an issue. On my MRI it shows scattered sub-centimeter, mostly peripheral deep white matter FLAIR bright,T2 bright foci are concentrated in the frontal lobes and seen to a lesser extent in the right parietal lobe and left temporal lobe.From the MRI of 3 years ago this has progressed. At this point the Neurologist suspects MS based mostly on the MRI. I do have some blurred vision and I know my vision has gotten worse I wear contacts for years. I was wondering if anyone has heard of this. When I look at the other symtoms for MS I have some urinary urgency and frequency and shortness of breath. However again the fatigue is my biggest problem and it is debilitating in itself. The other unrelated symptoms I have are cardio symptoms related to irregular pulse, high B/P.  I am following up with more tests seeing the eye doctor next week. I need some help here this is really confusing.  I really need some help trying to figure this all out. Is it normal for overwhelming fatigue to be a first symptom? Also what can be done about this fatigue?

casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 6/29/2008 4:10 AM (GMT -6)   
sorry to say fatigue and optic neauritis are strong symptoms for MS.  I had optic neauritis almost 7 years ago.  Also i was always tiredd, cranky and extremely depressed.  I was not a nice guy for a long time.  They finally found out i had MS last month.
 
Now this doesnt mean you have MS,  explain how youreyes are blurry?  ON usually affects only one eye.  Most important thing in my opionion is to figure out if you have optic neauritis.  Make an appointment with an nuerooptomologist. 
 
Im still a rookie with this, the ladies in here know alot more, and can offer more advice.
goodluck
 

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 6/29/2008 6:59 AM (GMT -6)   
Hi Casinokid80 Thank you for responding My left eye is blurry once in a while. I noticed it recently but I thought it had to do with my contacts or medication side efffect. I was having trouble seeing the computer. I will look for a Neurooptomologist. I was given a presciption to have a BAER test for evoked potential and told to see an eye doc. I am also wondering about Lymes here because I was on Fire Island about 3 years ago and after that is when the symptoms of fatigue started. Anyone who can help here please jump in. I need some input.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 6/29/2008 10:18 AM (GMT -6)   

I am amazed that with white matter lesions you did not get more testing to rule out MS!!  The doctor just said wait and watch or what? 

It does sound like MS.  Now there are other things that can cause white matter lesions - but that with the fatigue really sounds like you need to go agressively to either rule in or out MS.  If it is MS then there are treatments to slow it down and there are meds that help with the fatigue.

By the way - fatigue is frequently the first symptom for many later diagnosed with MS.  Assert yourself here and get some answers.  The other one tends to be vision problems (ON).

I am assuming your current neurologist is now requestiong more testing?  If not you need to be asking what he/she is doing to investigate this further.  Let your doctor know that you urgently want answers and treatment for your fatigue.

Good luck with that.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 6/29/2008 10:37 AM (GMT -6)   
Hi Gretchen:
This is now a new neuro I am going to since the first one was useless 3 years ago. He is sending me for the BAER and an eye exam and bloodwork. I know that you are not a doc but what did you think of the MRI info I posted there. The doctor seemed like he could go either way about looking into in more or not. He believes in treating the patients symptoms and not the MRI. He read off a list of symptoms to me and I said no to all of them. After the list was read I said like a stroke and he said no. He actually told me just answer yes or know to his questions like as if I were in court. Then I told him about the fatigue and he said we may as well look into it in that case. His attitude seemed strange to me. He really didn't want me to tell him my symptoms. he didn't seem to listen at all and I am really scared and confused.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 6/29/2008 10:50 AM (GMT -6)   

Sanddune,

You may want to get yet another opinion.  Try to find a neurologist who specialized in MS.  You need a FULL neuro exam. not yes or no to a bunch of questions.  He or she needs to test your reflexes, balance, sensory respones etc.  Even your new neuro sounds a bit cavalier as to really looking at what is going on.  Good luck!!!!


Gretchen       co-moderator MS board       diagnosed with MS July 2006


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 6/29/2008 12:44 PM (GMT -6)   
Gretchen,

I am looking at finding a new neuro. I was really turned off when he told me to act like I was in a court room when answering him. Anywayy He did do an exam and tested reflexes but He really didn't listen and blew off other stuff on my MRI about my pituatary gland which I didn't go into here. He thinks there is a cyst there but he said everyone has them or alot of people. Meanwhile it is no longer where it belongs and I was trying to point out the related symptoms I may be experiencing. Back to MS I just don't want to blow this off if it is something to be concerned about.

casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/1/2008 2:50 AM (GMT -6)   
sanddune let us know whats going on, after you get checked out by a real doctor and not by a prosacuting attorney.

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 7/3/2008 12:10 PM (GMT -6)   
Thursday p.m.
 
Hello Sand...
 
May I suggest you contact your state MS Society for a refferal to a neuro?
 
Fatigue is 1 through 10 on my list of worst MS symtoms.
 
It is with us ALL  the time.
 
And no one can understand the depth of our fatigue unless you are another MS patient.
 
Right, everyone?
 
John
DX'ed June 21st, 1987
 


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/3/2008 12:30 PM (GMT -6)   
Hi John and everyone>

I went to the eye doctor today and he said everything looks okay there. I had a visual field test that they want to repeat in one week. The lest eye didn't go well and he thought it was just a fluke. Is the visual field ever a problem with MS? I also have a Pitiutary cyst so that might be the reason for that. thanks

spikes4444
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 7/3/2008 4:33 PM (GMT -6)   
Hey Sanddune,

I was just reading about your situation and I just wanted to send you a little note to let you know the best thing for you to do is not stress out about your situation. I myself presented with ON and subsequently was sent for an MRI. They found 9 legions and I still have not been diagnosed with MS. The most important thing to know is whether your legions are active or inactive. They can be cause by other things such as head injuries, or even a high fever. I think you should definately get a second opinion but don't panick and try your hardest not to stress out about this. If all you are experiencing is fatigue, you could just have mono!

It's good that your doctor is running blood work and eye tests on you before sending you for MRI's or more invasive tests. Why not try and rule out the easy stuff first? If you have any questions feel free to ask, I haven't been doing this long but I am familiar with how scary the beginning can be.

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/3/2008 5:58 PM (GMT -6)   
Hi Spikes:

Thank You for helping. Anyone jump in here too. How do you know if the lesions are active? The MRI doesn't say how many lesions. The fatigue I have is overwhelming like hit by a truck and I have had for 3 years. I had a neg Mono spot 3 years ago.

On my MRI it shows scattered sub-centimeter, mostly peripheral deep white matter FLAIR bright,T2 bright foci are concentrated in the frontal lobes and seen to a lesser extent in the right parietal lobe and left temporal lobe.From the MRI of 3 years ago this has progressed.

spikes4444
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 7/4/2008 12:39 PM (GMT -6)   

I'm sorry honey, I don't know what all that MRI lingo means!!! But I do know that a neurologist should be able to tell you if the are still active or not. Apparently they do appear brighter on the MRI when they are active, or so I have been told.

It sounds like you still have a lot more tests to go through before you truly know what's going on, keep your head up, and ask them to repeat that mono test. Remember, legions can be caused by something as simple as a fever, your MRI results are not necessarily indicative of an MS diagnoses, and fatigue can be a symptom of so many other things.


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/4/2008 1:25 PM (GMT -6)   
Thank you Spikes I appreciate the support. I will continue to plug along next week and do some more tests another visual field and the Evoked Potential BAER. Meanwhile I will try to relax. I thnk I have been pretty mellow so far. It sure help to be able to ask questions.
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