Does this sound like MS--very scared

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New Member

Date Joined Dec 2009
Total Posts : 1
   Posted 12/7/2009 1:42 PM (GMT -6)   
I am 26 years old and have been feeling unhealthy for years.  I have a variety of endocrine problems, but in the last 2 months I have been experiencing CNS problems.
I was put on a cortef medication to help with my endocrine issues about 4 months ago, but this made me feel worse.  I did taper down but about 2 months ago, I started experiencing terrible headaches every day that would last all day and night.  The fatigue that I am having is similar to MS fatigue where you are almost completely shut down.  In the past two months I have had a variety of symptoms similar to MS such as decline in balance, vision, walking, coordination, lots of pain, ect.
For the past few days, I just started experiencing pain in my spine area which is scary and not a good sign.  I also virtually went sexually numb during the past few days as well.
If I do have MS, I think what triggered it was probably food allergies.  The sad part is that I figured out just a few months to late and may have be prevented.  Not sure.
My questions to you are, do this sound like MS? And if so, which kind?
I have been trying to learn about this issue.  Since I have been having symptoms for the past few months vs. a few days, I don't know if this is an attack/relapse or maybe PPMS.
Can an intial attack of MS last for months and then all of the sudden your symptoms go away like RRMS.  I have not been able to find out if an attack or your intial attack can last for months.
I just got tested for lyme's and it came back negative.  I am still not ruling it out though because I heard they can be false negatives alot.  Also, using the cortef medication I was on maybe triggered the lime disease or another virus which was dormant.
Overall, I feel like I am dying.  I feel like I only have a few months left to live and it is very scary.  I am not sure it it MS or another disease.  I am in the process of trying to get into a few leading hosptials in my state.
The last question is what tests to ask my neurologist to test for MS.  I am scheduled to have an mri this week and meet with her next week.  I probably will however be requesting that additional tests be ran this week to check for things. 
A few tests I have seen are a spinal mri, lumbar puncture, evoked potentials.
I am thinking of asking her for a spinal mri due to my pain I have been feeling lately.  Would this be a good idea.
Also, what tests would recommend I try to get done during the next few weeks.
Thank you and God bless.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 12/7/2009 2:45 PM (GMT -6)   
Hi Big Pete,

Welcome to the forum!

I totally understand what you're going through. I have many of the same symptoms, not all, but enough of them to sympathize! I have blurry vision, double vision (vertical), ataxia, severe brain fog, I drop things/knock things over, pain everywhere, etc. My first bout with these symptoms was in 2008, and did last for several months, then went away and came back about 2 months ago.

I don't have a diagnosis of MS; I too have been going through the process of elimination trying to figure out what is going on. My MRIs are clean, my EEG was normal. I'm awaiting the results of blood testing for Lyme disease and B-12 deficiency. My neurologist is convinced that it's my fibromyalgia causing all of the symptoms, while my rheumatologist still thinks I have CNS lupus even with the normal MRIs and EEG.

I think I should have a spinal tap and/or a spinal MRI but neither doctor wants to do that.

The big problem is that I have celiac disease, lupus, and fibromyalgia and all of them can cause neuro symptoms! I'm sure that much of the pain is associated with the fibro and/or the lupus. I also have RA so I really have "rhupus". I'm just not completely convinced that these AI diseases are responsible for everything I'm experiencing, particularly because I've had two bouts separated in time. I suppose I could be experiencing rhupus flares, but I just don't's confusing.

You seem to have a good idea of the tests you might need to have....have you had an EEG?

Best wishes....please keep us posted!!
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 12/7/2009 11:57 PM (GMT -6)   
Just to clarify; eeg is not usually used to diagnose MS.  An eeg is most often used to check for epilepsy or other seizure disorders.
The eeg deriviative called "evoked potentials" is what is most often used.  This is similar to an eeg but an added component is used.  Once electrodes are hooked up to the scalp, then stimulation is "evoked" and the time it takes for the CNS to respond is timed.  Typically, evoked potentials tests extremities, vision and hearing.  You will get results that describe those systems as "normal", "delayed", "abnormal" etc.  Evoked potentials is an extemely helpful test.  If you have a normally responding CNS, then you probably don't have MS. 
Big Pete,
You are way jumping the gun on what kind of MS does this sound like.  Let's just take this one step at a time.  Let's see if you have any lesions on your MRI.
If you truly feel you are dying, then by all means get to a hospital.  I felt awful after three weeks of severe and chronic vertigo.  I was hospitalized due to the fact that I was wall walking.  I got my diagnosis fairly quickly.  I had an MRI with a lesion.  I developed another lesion 5 weeks later. After another MRI, a spinal lesion was found.  I had a lumbar puncture and evoked potentials.  Along with a neuro exam that presented abnormal reflexes and responses, it was pretty much a done deal.  My diagnostic journey all started with a trip to the ER.  So going to a hospital and letting then know what is going can be a good way to start!!
I was extremely ill and PPMS was on the table at first.  It takes me months to recover from my flares.  I am now diagnosed with RRMS. 
Good luck and keep us posted.
Gretchen  ~  diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

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