Does anyone with MS have any forms of fainting Autonomic disturbances?

[Stephanie_C87]

Hi,   My name is Stephanie. I have been on a long search with the medical community to figure out what the hell is wrong with me? I am not looking here for a dx but kind of trying to seek some understanding. I get sick so often. A cold puts me out for weeks. I have supposedly a nuerogenic bladder, bowel-constipation issues, random tremors, muscle jerking, my aunt has MS, and I have had two nuerologists that are so cold.  I am going to see a new one but they thought I was crazy. I had tilt table testing and found I have a serious case of nuerocardiogenic syncope and I am exercise intolerant. I started to faint before I got on the treadmill. I found I had ptosis in my right eye a month ago. At that time, (because everything seems to happen in episodes) I went to the ER because I had pain from the waste down like being pinned between a car and a wall. I had that for 3-4 months and then my right side of my face drew up (my mouth and cheek went numb R. side) and it twitched on one side for a week and just went away. Proving to my doctor I am crazy..ugh My urinary retention happens in spells, I have had to be catherized in the past. At that time, my bladder was acting up and still is now. UTI number.. I dont have that many fingers and toes. Urology sent me to physical therapy.. where she noted my right hips range of motion is off and my right shin was very stiff. I have had a mri in the past and spinal tap so I thought MS was ruled out and the ER doctor insisted I be re-tested after I told him it was ruled out. The nuerologist I seen actually told me She didn't think I had actual migraines and that she thinks the opthamalogist is wrong.... I had had 3 concussions I know the difference between migraines and simple headaches. I don't know if anyone has any advice or experience but I need it lol I actually went to a psychologist to be tested for somatic disorders just say they can't continue to say I have them anymore. Waiting for the results so I can put that in my records. I go to see a new nuero on the 6 th of June. What should I do before I go? They already have my medical records...It's crazy I feel like I have to prove I am sick and not mental (atleast in that way) in hopes they will actually help me. By the way, I am 24 years old and shouldn't be so sick at my age.

[Twinsmom06]

Hi there. So sorry to hear about all your are dealing with. I am in limbo with an MS dx. My GP says yes, by neuros says "I just don't know" so now I am headed to the MS Specialist on Monday.

Your post is interesting to me because when I was 18 or 19 I started having fainting spells. They would happen out of the blue and it was very scary. I eventually "got used" to how I felt prior to it happening and was sort of able to control it in a way. Not always...but sometimes just sitting, taking in some breathe or laying down would keep it from being a "full-blown" pass-out. I am 31 now but I think the fainting stoped around the age of 21. I didn't pass out again until I had my LP...and then again when I had my blood patch from the LP. Odd because it didn't even hurt but that is the way my body reacted to it....sucked!

I have multiple brain lesions (dozens) but nothing on my spine and a negative LP. I have left side numbness and a general feeling of not having my balance...although I never fall.

Anyway...just some of the similar things made me really look at your post. You are dealing with A LOT and it sounds like you might have a couple of different things going on. Please go find a new neuro...and one that does not think you are crazy. You know your body better than anyone in this world. Don't take any crap! :)
Take care and please keep us posted.
Kim

[beema36]

I am sorry you are going through this.
To answer you yes I have ms plus I have autonomic dysfuntion which causes fainting. Today I also received a diagnosis of rheumatoid arthritis along with possible lupus.  I also have fibromyalgia and osteoporosis.
It took years to get a final diagnosis of ms. I understand its frustrating. My advice is find a dr who will listen to you and work with you. Easier said than done I know.