Could you please share your journey of how you got a MS diagnoses with us?

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susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 12/22/2009 2:56 PM (GMT -6)   
Hello,
 
I am hoping that some of you would be willing to share your stories of MS.  I have had symptoms for 10+ years and am yet following up with a Rhuematologist and Nuerologist in January.  My Rhuematologist said it sounds like Lupus.
 
I am hoping you can share the following with us:
 
1) symptoms prior to and after diagnoses?
2) How long did it take until someone finally diagnosed you
 
 
Here are my symptoms:
1)  flare ups with no signs of problems at all
2)  numbness & weakness in limbs (hands, arms, feet, legs, even face, back & tongue).  It kind of feels heavy.
3)  recently a new symptom has developed which is burning sensation (feels like vicks vapor rub is on me) and this burning sensation might last 10 minutes in the chest, then in the back, then in left leg, then right and moves around.
4)  + ANA (antinuclear antibodies)
5)  +ACA (anticardiolipin antibodies)
6)  Pleury/costocondritis
7)  Extreme fatigue/exhaustion
8)  foggy feeling (feeling out of it)
9)  anxiety with these symptoms (but then again, who wouldn't get anxiety)
10)  trouble sleeping
11)  one child &  two miscarriages
 
Thank you so much in advance for taking the time to answer these questions.
 
God Bless,
 
Susan
Age 41
 
I am going to a nuerologist on the 8th of January. 

susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 12/22/2009 3:04 PM (GMT -6)   
Oh yeah, I forgot to mention

12) two seizures at the age of 10 (normal eeg's since)
13) uveitis twice
14) Raynauds

Chris Schomber
Regular Member


Date Joined Dec 2009
Total Posts : 24
   Posted 12/28/2009 11:11 AM (GMT -6)   
Susan,
Hi, I am Chris, and welcome. I don't quite understand flareups with no signs. I was diagnosed in 2007. Most people have had it awhile by the time they actually get diagnosed. One day, I woke up and my right eye felt like someone was trying to push it in. I blew it off as bunching up the pillow or something. Two days later, I could barely see. It was like trying to look through cloudy plastic sheeting. This went on for a few days and then I went to the eye doctor and she said the eye looks normal. I said I couldn't see. She requested an MRI at that point. That showed lesions. Then a spinal tap showed abnormalities. It was called clinically isolated syndrome. One incident. Took another year before I was diagnosed with MS. Switched doctors. You will begin to put two and two together she said, things that you blew off as getting older or just being sore or sleeeping wrong will beging to make sense. My arms and legs feel alot of pain, vision fades in and out, you may, like me have cognitive problems at times. It is like a ghost Susan, thoughts are there, then gone. I work on high power electronics. I can be walking 30 feet to get something, and stop half way and wonder what I was going to get...A mistake in my field means you can die very easily. Trying to solder some days, my hands shake pretty bad. Legs feel very heavy and muscles feel mlike I have been beaten. I keep going though and smiling. Somebody has to be me! Have a good day and God Bless, Chris

jsher
New Member


Date Joined Dec 2009
Total Posts : 10
   Posted 12/28/2009 2:36 PM (GMT -6)   

Hi Susan,

I am 39 am still waiting for my diagnosis. My spinal tap is on January 8th. Here is my history:

No issues EVER. I was a dancer so very much in tune with my body. about a year and 1/2 ago I starting feeling VERY fatigued with occasional heaviness in my legs. I was given a blood test and told nothing was wrong. the heaviness in my legs and extreme fatigue continued and I ignored it. They tested my thyroid and not much else.

The last week of this past July 2009 I started having mild tingling in my feet. I went back to my doctor who told me to take vitamins.   Two weeks later I developed the bullseye mark of a lyme tick bite. I was immediately told to go on a six week course of antibiotics. Which I completed. The tingling never subsided or went away.

A neurologist was convinced it was a nutritional deficiency. Tested my blood for everything under the sun. No deficiences. She did an EMG: no nerve abnornalities. Finally ordered a brain MRI (with contrast) just in November. Four lesions on my brain. Then a cervical spine MRI (with contrast) more lesions. Now I have the spinal tap on Jan. 8.

I still have the tingling in my feet (no numbness), extreme fatigue, some minor blurring in one eye, heaviness in my legs and occasionl tingling in my hands. I am now seeing an MS specialist who insists the Lumbar puncture is necessary to rule out other issues, including chronic Lyme. But, it seems everyone is leaning towards MS.   

I live in constant fear of what this diagnosis will do to my life. good luck to you and I hope only the best for you!

    

  

 


susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 12/28/2009 4:01 PM (GMT -6)   
Hi there,
Thank you both for posting a reply to my question. I think one of the biggest thing is the uncertainty of not knowing what is wrong. Chris you seem to have a good attitude. It is YOUR body and it sounds like you are making the best out of it. That is awesome.

JSHER - I think the uncertainty of the unknown is the most difficult. I think once you get a diagnoses and move past acceptance, you will do just fine (as will I). I have a girlfriend who has had MS for over 14 years and she said it isn't a life sentence. She has a fabulous attitude and does great!!

In terms of the spinal tap, I have read different things regarding that. It doesn't completely rule out or say you have MS (from what I understand). I had that procedure done 10+ years ago and I will not do it again. Mine came out good.

If you do undergo the spinal tap (lumbar puncture) make sure they give you steroids to take at home and lay FLAT for 2-3 days at least. Drinks lots of caffeine to avoid getting a spinal headache.

God bless you both.

Susan
Susan
41 years old
Married with one child
 
Waiting on diagnoses:  Lupus, Fibromyalgia, or MS.  +ANA, +ACA, MTHFR heterogenous gene A1298C


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 12/29/2009 1:35 AM (GMT -6)   
I had no symptoms prior to my first issue.  I experienced vertigo that worsened over a three week period.  I was eventually hospitalized as I could not walk unaided.  I was in the hospital for four days and during that time had lots of tests.  I had a spot on an MRI that was diagnosed as a small stroke.  Five weeks later I had more issues, again with the vertigo but also with double vision.  Off for another MRI as they thought I was having another stroke.  This time another spot showed up in a different place.  The neuro did a lumbar puncture and oligoclonal bands showed up.  I had evoked potentials that showed normal hearing, abnormal vision and delayed lower extremeties.  I had abnormal neurological reflexes and responses typcial for MS.  My cerebral spinal fluid and blood work showed no sign of infection or other disease.  I had two more MRIs; cervical spine and thoracic spine.  I showed one lesion on my t-spine.  I recieved an initial diagnosis of MS from this neuro.  He referred me to the UCLA MS clinic and there I got my second MS diagnosis. 
 
The entire diagnostic process took about four months from first symptom to second opinion.  Four weeks later I started copaxone in an attempt to slow down progression.  I now have four brain lesions and three spinal lesions.  I have many symptoms.  The vertigo that started all this is still my constant companion.  I still find joy in life.  Life doesn't have to be perfect to be beautiful.


Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/29/2009 3:45 AM (GMT -6)   
jsher said...
Hi Susan,

I am 39 am still waiting for my diagnosis. My spinal tap is on January 8th. Here is my history:

No issues EVER. I was a dancer so very much in tune with my body. about a year and 1/2 ago I starting feeling VERY fatigued with occasional heaviness in my legs. I was given a blood test and told nothing was wrong. the heaviness in my legs and extreme fatigue continued and I ignored it. They tested my thyroid and not much else.

The last week of this past July 2009 I started having mild tingling in my feet. I went back to my doctor who told me to take vitamins. Two weeks later I developed the bullseye mark of a lyme tick bite. I was immediately told to go on a six week course of antibiotics. Which I completed. The tingling never subsided or went away.
r
I live in constant fear of what this diagnosis will do to my life. good luck to you and I hope only the best for you!


jsher,

I'm so sorry you're going through this; it must truly be devastating. I'm experiencing many of the same symptoms.

FYI....with chronic Lyme, six weeks of antibiotics is not enough. My SIL underwent 18 months of intensive antibiotic therapy before she was done.

I tested positive on the Lyme ELISA test; I'm waiting for my Western blot test to come back. My lumbar puncture is scheduled for Jan. 5th....same day as my spinal MRI. Both of my brain MRIs were clean.

Best wishes to you, susan1, and to all who are still in limbo to any degree....may we find answers in the New Year!
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

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


autoimmunediseasesgfliving.blogspot.com

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