could all this be MS? not fibro...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 9/30/2013 11:19 AM (GMT -6)   
I have been sick so much lately. With extreme fatigue, aches, flu-like feeling, depression, blurred vision, numb lips, vibrating in chest, occasional clumsiness, migraines, constipation, freq.UTI's, startle reflex--so many things. I just don't think spending almost everyday wiped-out in bed is just fibro.
 
Any ideas...Thx. Sueg

kholmes
New Member


Date Joined May 2013
Total Posts : 12
   Posted 10/3/2013 12:40 AM (GMT -6)   
i am going thru the same thing, rheumy ruled out everything else and now my gp wants me to see a neurologist, i have been sick for years with no answers, close to 10 years really, many of those years no insurance so mostly er visits, history of bulging disc and DDD. first thing i can remember is extreme fatigue, burning, itching, numb feet to the point i could not walk by the end of the day, following that was severe depression, anxiety, fatigue and chronic pain. may 2012 so sick i could not get out of bed, i have bursted out crying for no reason (at a restaurant) , i am having swallowing problems, speech problems, eyes hurt, see color distortions and object distortions, blurry vision, my voice goes away, tremor that you can see and some you cant see, severe neck pain, shoulder pain, arm, hand, leg, foot going numb, severe leg pain, cant feel my feets, stiff and sore, cant take the heat, short term memory loss, extreme fatigue, insomnia despite sleeping meds, pain that wakes me up, severe back pain, my legs get stiff and i cant use my feet so i have to shuffle sometimes to walk, it is like i have these flares for a while, months, and then i get better (a little) i lost my job last year because i could not mentally focus on what i was doing, basically things i had been doing everyday for years i was just going blank on, making lots of mistakes, have had every blood test you can think of-will have mri next week, my knees give out and i have fallen, sound familiar, i am desperate, if i have ms that is ok at least i will finally know what is wrong so i can hopefully get better kel

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/3/2013 1:08 AM (GMT -6)   
So glad to hear that you are having an MRI next week, you are probably counting the days until you can get that done. I have so many of the same symptoms you have and we need to keep on bugging the doctors to get some answers. They are there to help us--so let's make them work hard for their money!!

Good luck with your tests, I will be thinking of you and praying for you. Let us know how it goes.

Thx. Sueg

kholmes
New Member


Date Joined May 2013
Total Posts : 12
   Posted 10/3/2013 1:35 AM (GMT -6)   
have you had any test like mri or spinal tap ? i have not had an mri of the brain in years, i told my doc last month i was having this severe pain, esp. in my neck and back, and asked him to do an mri, all did was an mri of my neck, with dye, showed nothing, do you know if i had lesions or damage it should have shown up on there right, i am so sick of this, i do not think i have fibro or i have both, i dont have the typical fibro symptoms, much less the tender points, or whatever they call the, i think my rheumy doesnt know. are you seeing a neurologist now ? have you had any test, im doing good to leave the house, i am getting to the point that sometimes i could use a cane or crutch but i am too embarrased, i never dreamed i'd get sick, i have no support with family, except my new husband, he knows what it is like to loose your life, he has psoriatic arthritis, he went undiagnosed for 10 years too, what really worries me is the my non-functioning brain. my speech,does it normally get to this point to get a diagnosis

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/3/2013 1:02 PM (GMT -6)   
Just read your post. I have never had an MRI or a Spinal Tap or ever saw a Neuro so all of this stuff is new to me! I am just guessing but I think your doctor should do an MRI of not just your neck but of your spine and your head. With all the issues you are having he needs to be more thorough. Maybe you could ask him to do more testing. Be bold and just ask!
As far as the Fibro stuff, I too have been told that all this stuff is Fibro by my Rheumy and maybe some of this is. But I think there is more to all of this-- you know your own body and when something does not feel right. BTW, I never had any tender points at all like the symptom lists talk about.

I would call and speak with your Neurologist's nurse, tell her you are feeling very sick and would like more testing. It can't hurt...just be honest!

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/10/2013 5:31 PM (GMT -6)   
I went to the Neurologist a few days ago. And I will be scheduled to go for a MRI and a EMG. I have never had either of these before. But the numbness in my arm and fingers now has gone to my leg. But it is not all the time so that is good. Not sure how long it will take to get in for an appointment. They seem to be overbooked, why don't they use other facilities or do something instead of making us wait. It is too hard to wait for tests to be done.
 
I wonder could all this numbness be from Fibro? And I have a strange pain along the back of my head...
 
This is off the subject, but I was reading about MS fatigue and it is called Lassitude. That is just what I have (not a MS diagnosis yet) but it sounds exactly how I feel.
 
 And I am on my 4th day of feeling well! YAY!

nannie710
New Member


Date Joined Oct 2013
Total Posts : 3
   Posted 10/16/2013 10:41 AM (GMT -6)   
My Neurologist test me for everything from Aids to Lupus. I do have fibromyalgia, I have chronic migraines that mimic strokes, I have sever nerve damage in my legs, arms and elbows. I am in a wheelchair, as I only walk about three steps and that is with assistance. With the spinal tap I tested positive on two rings and my MRI shows I have lesions, however I still have not been diagnosed. I do however have all the other symptoms.

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/16/2013 4:17 PM (GMT -6)   
If there is proof from your MRI test showing lesions then why is there no diagnosis?  Just wondering....

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/16/2013 5:04 PM (GMT -6)   
Sorry for all the questions but can 1 MRI test and a muscle or nerve test called an EMG be enough to tell for sure that it is not MS?
 
Just being paranoid here! Help!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 10/16/2013 7:23 PM (GMT -6)   
I received my initial diagnosis after one MRI and a neuro exam (testing for certain reflexes and responses. I received a second opinion/diagnosis after a lumbar puncture and evoked potentials.

Remember that an MRI will show lesions but lesions can be caused by more than just MS. A lesion is just a scar from damage. That damage can be caused by Lyme disease, migraines, infection, Alzheimer's, or stroke.
Diagnosed with MS July 2006

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

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/16/2013 8:33 PM (GMT -6)   
 So then lesions are not specific to MS but can be caused by other illnesses, and how do they determine what it could be that has caused them--and the symptoms we have?
 
Thanks for all the information.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 10/18/2013 8:29 AM (GMT -6)   
Doctors must rule out all other causes. It's difficult and can mean misdiagnosis. I had reflex responses that indicated brain damage typical for MS. That with my MRI started the ball rolling. Then I had evoked potentials (normal for hearing, delayed for lower extremities and failed for vision) along with a lumbar puncture that indicated oligoclonal bands. My blood work was clear of all other possible causes.

I have responded well to MS treatments which becomes the final diagnostic tool. I have had 1,250mg of IV steroids for 5 days straight with a marked decrease in all symptoms just following an MS exacerbation.

Post Edited (Gretchen1) : 10/18/2013 7:32:44 AM (GMT-6)


sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/18/2013 4:40 PM (GMT -6)   
Thank so much for your answer.
 I have had SLE and migraines in the past and yet my blood tests show no positive results for now though I still feel sick many days. So I am wondering if there would be damage from these two things showing on my MRI. Or if I need to be tested further with a LP will they be able to know just what illness this m/b?

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3922
   Posted 10/18/2013 4:42 PM (GMT -6)   
Lyme disease can also cause brain lesions and MS like symptoms. If they won't diagnose you with a definitive MS - it might be worth finding a lyme specialist through ILADS to get evaluated for lyme disease. :)
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
July 2013 - Weaning off of antibiotic treatment

Feel free to click on my name and shoot me an email. I have referrals for DE, PA, and NJ areas.

RacetoEraseMS
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/18/2013 5:57 PM (GMT -6)   
Gretchen1, I work for a non-profit that generates funds for MS research and I absolutely love your quote: I have no lesions on my soul and so I live with no limits." I would love to use it, but I want your permission if you are the author. Please let me know! Thanks.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 10/18/2013 6:30 PM (GMT -6)   
Race,

I AM the author. It is my mantra. You may use it as long as it only benefits a non-profit organization.

Those words have brought me so much comfort in the face of this disease.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 3:10 PM (GMT -6)
There are a total of 3,004,381 posts in 329,140 threads.
View Active Threads


Who's Online
This forum has 161738 registered members. Please welcome our newest member, Rosheen.
209 Guest(s), 13 Registered Member(s) are currently online.  Details
pam lewellen, Kent M., running wild, Ss800, birthdaysuit, Mrseaglea, Admin, Girlie, Missouri, Chow Wan, jrpsf, hrpufnstuf, ldog