Well, finally I am diagnosed with SLE Lupus which is affecting my CNS and my brain I am told. I don't really know what to say right now. I have been grasping for answers for so long and now that I am told what I have, It just won't sink in yet.
I have been put on Plaquinal and dr is hoping to see remission/positive results within 4-5 months. I really just feel kind of numb/nauseated. I am told the lesions on my brain are also seen in lupus and the neurological symptoms I am experiencing are also seen in lupus affecting the CNS. Rheum/immunologist told me he will manage my care along with my neuro and that I will need to keep going to her..He did not tell me a whole lot.
I think he wants to see how I respond to the med before he makes any kind of prognosis. It has been an amazing trip trying to figure out what was going on with me and even tho ther were times, I wondered if I was just going crazy, I knew down deep ther was something wrong so dont ever give up.
I am also told the cognitive issues I am dealing with are also indictive of lupus. So, good luck to me and all of you guys. I gues I will be leaving this site but I wish you all well and God Bless you all..
Thanks to all you guys..I will keep you posted as I am interested in what is going on with you, also.
Hey Jivon, yes I have all the symptoms of MS, ringing in my ears, blurred vision and pain in eyes, nerve pain throughout my whole body, muscle spasms, lower back pain, colon and bladder spasms, leg, ankle and feet pain, burning muscle pain, joint pain (hip, wrists, knees, I can only walk a short distance becasue of the pain in my right hip) feeling of weakness, nausea, abnormal NCS, elevated ANA, elevated white blood count, numerous UTI, pneumonia three times in one year, heat insensitivity, memory loss, trouble expressing my thoughts. I had several old lesions on my brain..
My neuro knew I had an autoimmune but he was not convienced that it was MS because I did not have active brain lesions but all the symptoms therefore, he was convienced it was systemic (I did not agree but who am I) so he sent me to a rheumatologist/immuniologist and he did a mega bunch of blood work and found that all things point to lupus. He says it is affecting my brain with the lesions therfore causing neuro symptoms..
Good luck to you and if you feel this may be going on with you pursue with your GP or neuro to get appt with rheum for peace of mind because even though some of same symptoms, treatment is different.
Well again all tests were normal..not that I am wanting something to be wrong but I know it is and I want to know what I am dealing with. Normal LP..Normal VEP, Normal MRI (data only) of the gray matter. So, we continue to wait.
Will see the immunologist/rheumatologist again for the blood results of mega tests on 06/11 so we will see what he has to say. I feel like everyone is thinking that I am a hypocondriac(spelling?) but I know how I feel and most of the time that is lousy. Neuro did ask me to start taking Cymbalta and relunctantly I agreed and my feet (nerve pain) and stiffness felt better the next day and I also slept better. At this point, I am willing to just treat the symptoms. I feel a little foggy but I felt that way anyway, it just makes it more foggy and dizzy, nauseated, etc. but I think the longer I take the cymbalta, it will become more tolerable.
I will go back to the neuro in August and have another MRI..the symptoms are getting worse and I dont know what that means but I am hangin on and treating all I can with a crap load of meds that I dont really want to take but I dont see any other alternative. Neuro told me that sometimes some people who have MS symptoms are never diagnosed because they do not meet the criteria set forth by insurance co because med is so expensive..and she has a lot of patients that are in that category..they just treat the symptoms..
Sad that we have to live our lives within guidelines set by the government and insurance companies..drs hands are tied to those regulations and it has to be very frustrating to them to not be able to treat patients like they want to. This is a whole other story for another day.
Do any of you have TMJ problems and do you get sleepy when driving..these are two new issues I am dealing with right now.View Thread
DITTO...same here..heat kills me (feel all the same symptoms you guys are talking about) still no diagnosis but keeping my chin up. Got results today from MRI (data only) on the gray matter..normal..LP..normal..VEP..normal...then why don't I feel normal..LOL
Will be going back to immunologist/rheumatologist June 11 for results of mega blood work..will see. neuro wants me to come back in Aug for another MRI. when will it end? gotta keep going though..
Hey everyone: My WebMD name is changing from Readyfordx (ready for diagnosis) to NanaJudy6. I am nana to six wonderful, precious grandchildren (yeah I guess I am a little boastful, sorry).
Anyway, I want to be a positive influence to myself, my family and friends and that includes my WebMD friends. As of my last post, I have had several tests including a VEP, cognitive eval, MRI (data only) of the gray matter, and a spinal tap. Had about 6 days of headaches, along with back spasms after the LP but not bad enough to have a blood patch.
I will be going back to my new neuro the 29th for test results, saw the immunologist/rheumatologist yesterday and he is doing mega blood work so I should be getting some answers soon. Just letting you all know what is going on..will get you posted.
Oh no, I am more ready for a diagnosis than ever and I think emotionally as well as physically. Maybe it just took God a little longer to prepare me (I have been known to be a little stubborn) for whatever is out there for me, I don't know but I am ready for whatever I have to deal with.
I am a strong person (maybe too much sometimes) and I will continue to fight this battle and I want to encourage others as you do. You have been an inspiration to me as I have traveled this journey and I always get something positive out of your reply. I read your articles and I laugh as I am sure you do at some point (after the pain). You have a good attitude which I know plays an important part in how well you respond to treatment.
Dear PaigeyRog..sorry that no one has responded to you. I have not yet been diagnosed with MS or anything else but am searching for answers as we speak.
I know my body and I know something is wrong so I have made the decision to take my health in my own hands as I suggest you do. I know that your potassium being low can cause many symptoms so you should know (if someone has prescribed you potassium) as your potassium level raises higher. I suggest you do some research under the MS society of American and get info that you need to see if you fall into the symptoms of MS or just simply type MS on your search bar and you will get much info..I always try to stay with reputable sites so I will not be mislead. such as WedMD, mayo clinic, MS society, etc.
If you feel you have somethng neurological going on, talk to your GP and get him to refer you to a neuro preferably one who specializes in MS. He/she will do a neurological work-up and possibly a MRI and other tests to confirm or dismiss MS.
There are many different disease, conditions, and even vitamin deficiancies that could cause many symptoms. could even be orthopedic..but I sure would pursue answers as we all deserve that much.
Good luck to you as you pursue this journey. God Bless
Thank you, I appreciate all you say..the neuro I am seeing now is also my third (charm)..I am not sure that I actually believe everything happens for a reason but I certainly do believe God can use the things that happens in our lives to our benefit and to benefit others and I know (with no doubts) that he will use whatever is wrong with me for his glory and I am so humbled that he would choose me to do his work.
I want to get better so I can help others deal with what I have dealt with for the past couple of years..I would hate to think all of this is for nothing. Sending prayers and positive thoughts you way, too
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