What is happening to me????

[Tennille111]

I have been having strange symtoms for years now. I am a 32 year old female. I have been going to the neuro. Recently I have been having trouble with my right eye. My vision has been getting worse by the month. Then there is shooting pain it it. Also my eye lid is swelling for no reason, just randomly. I am now having constant floaters. No headache at all. facial numbness on the right, so much so that when i smile i look like i had a stroke. I also have less sensation on the whole right side of my body. I am also having reflexes on the left that are hyper. with muscle weakness on the whole left side of my body. I have trouble with swallowing. The aching in my fingers has subsided. I have had an MRI of my brain which came back normal. I had a VEP that was also normal. I had a spinal tap with normal results.  What is going on? Could this still be MS?

[Tennille111]

Thank you so much for the advice. I will try this. It is getting better everyday which is good. I think my husband is just annoyed by it all. I have just stopped complaining because it isn't doing either one of us any good. I think he is sympathic about this but doesn't really know what to do. Strange illness just seem to be my thing. I have a strange question...Do you know if endometriosis has any connection to MS?  I am super super scared to have another LP after this last one. I don't know if I could go through with another. Well thanks for the support, sometimes it seems hard to come by.

Tennille

[HollyHuney]

I know how you are feeling hun. I really, REALLY do. All I can suggest is to just keep going, day to day, pressing along. I am sure your husband is concerned, even if he doesn't seem it. My husband and I kinda got into it last night for that one reason, I felt he didn't care or want to understand what I am going through. He said that he is incredibly worried, but doesn't know what he could do. He feels just as lost as I am. Maybe your hubby is feeling the same. Talk to him. Tell him you feel alone even though he is sitting right there. Tell him you know there is nothing he can do to fix the problem, but a surprize hug and kiss or flowers to say I love you and I care about you mean more than any words you can say.

I would ask the neuro for the spine MRI. Sometimes the lesions don't show in the brain first, instead they head to the spine. As for the LP, I know how ya feel, had the same thing happen to me with this quack of a doctor. Told me, after trying to do the LP 5 times, that I had scoliosis. I went to my regular neuro and he did the LP bing bang boom, no problem. But I was very sore after. To relieve some of the pain I used 1/2 hour heat, 1/2 hour cold temp along with 400mg of Ibuprofin for inflammation. Do the 2 rounds (Hot, cold) 3 times a day if you can. Morning noon and night. It helps relax the muscules.

Let us know how things are going and try to stay optomistic. I know how hard it can be, but just try. All of us are always here ready and willing to talk you through anything on your mind, even if it's just to vent, scream, cry and throw something out the window. We'll help ya open the window! LOL

Holly

[Tennille111]

Thank you so much for responding. I was starting to feel really alone in this ordeal. I have been seeing an MS Neuroligist. I saw a Neuro opthamologist. At that time I was having some vision loss. That seems to have subsided some. All the tests so far have come back normal. I have not asked to see any of the results. Should I? My dr. told me when I went in for the neuro test that it certainly looked like MS. When he did the reflex test on my left foot, I had a strange response. He re did the test 10 times with the same response. My toes all went up and out. I know now that that was not right. I feel like I might be going crazy. At least I am not alone. My husband is starting to question the issues all together, and while I can understand that it is super frustrating for me. I have not had a MRI on my spine. Should I ask for one? I see him again on Friday. During my spinal tap they could not get it in so I ended up with 5. I couldn't walk for a week and I am still having pain in one spot where there is a dent now. I am not a big person (5'5 135) so they are not sure why this was so difficult. Thank you guys so much for all your advice! I wish I would have found this page months ago.

[HollyHuney]

Welcome Tennille!

I also started my journey out with full right sided numbness back in 2000. I am, as of today, still undiagnosed. Everything keeps coming back normal, but my symptoms aren't normal!

I actually lost most of my vision in my right eye today. (Been going through an exacerbation the past 3 months.) Right arm is numb and tingly, facial numbness, vision issue, dizziness, the works LOL (I feel like a darn car wash ... would you like the Works with this months relapse?! LOL)

All we can really do is just keep going back to the Neuro, insist on testing and retesting often, until something shows up.

I spoke to my cousin today, who was diagnosed with MS back in her 20's (she is now in her 50's) She advised me that if my neuro can't find anything with this last round of tests I just went through, to request an MS Specialist. She told me she went through 3 Neuro's before being diagnosed and it took a while.

So, go back to Neuro, get all the tests redone (LP, MRI with and without contrast, VEP, SSEP upper and lower extemedies, blood tests EVERYTHING) Also tell him you want to be refered to an MS Specialist. It's your body, your life. You have every right to ask for more than one opinion! You wouldn't buy the first car you see on a sales lot, right?

Let us know what happens hun,
Holly

[sllowe]

Hi Tennille,

Thanks for joining us.  You ask the magic question...is this MS? I've not heard of the eyelid swelling in MS, but the stroke-like I can relate too.

Have you been to a neuro-opthamologist for your eyes?

I'm sorry you've been delt this hand - hope we can help you get through it.  It does sound to me that your Dr. has ordered the right imaging and tests just so long as a bunch of labs were ordered along with what you mention above.

Whether this is, or isn't MS you sure will meet a lot of us who are dx'd undx'd and differential dx's too and may share the same symptoms.

Welcome aboard!