I posted here a few years ago when I had other symptoms and now I have new symptoms and my neurologist is finally thinking that something strange might be going on with my body.

2005 was when things started off. Numerous times in one year I went to the outpatient clinic due to sudden paralysis, chronic pain stemming from the jaw/mouth to the inner ear on one side of my face. I wasn't able to swallow or speak- the pain was that severe. Got a pain shot and some steroids to correct it, then they sent me home with no explanations or referals. Then the tremors, tingling and numbness started in my fingers/right hand. Had an EEG test- came back neg. Three doctors all told me I was crazy and that the symptoms were ALL IN MY HEAD! I was very irritated and humiliated. One doctor even told me I was psychotic (I have BPD)- which was more than I could take by this point. Throughout this journey I developed migraines. No one would refer me to a neurologist to treat them. I just had to endure them with over the counter meds. Finally I got a referal by one of the rude MD's, who told me that 'I was crazy'.

I've been treated by the neuro for 2 years. Had a false MRI two years ago. The Migraines have worsened and last November dizziness and nausea started up with/without the migraines. Then two months ago the dizziness/nausea became so bad I have been immoble. Saw the neuros' PA instead for a migraine with the dizziness. She dx'd me with vertigo. Had the Eply manuver done to treat the vertigo. It didn't work. Instead, it made things much worse.

I have hearing loss and wear hearing aides in both ears. Over the last twenty years I have had a steady hearing loss until this past year. I lost 10 decibels of hearing in both ears last year. It alarmed my audiologist and she was dumbfounded by the loss and couldn't figure out why it was significant compared to past years. Since I was tested in January me and my family can tell that I have lost even more hearing due to how annoying I am at home and on the phones.

The PA is ordering up an ENG test and another MRI. Should I be concerned about having these tests done? I have no idea what to expect or what they might find. Is this what any of you expereinced before you were dx'd? Am I on the wrong forum? I am very lost and confused.

Any direction or support would be appreciated.

Coffeegirl

I've had many mri's and from a fast Google see no reason to be concerned about the ENG. You seem safe with the test.

No, this is not what I experienced, but we are all different. I got the pleasure of waking to no consistent walking..... BTW I also have migraines, but the two are not related.

Do you belong here -I have no idea - if you have MS, yes. If not there are many forums here. You will feel comfortable with them - all will give you massive support.

It seems you have been seeking an answer for some time. Many come here for advise-Some are not MS - Some are. If you believe you have MS, I suggest you see an MS Specialist. A review of your scans and a LP (if needed) ... will confirm. I truly wish you well .

Good Luck

~~p~~

There is a symptom I forgot to write about.

I had mono three times when I was a pre-teen and teenager. My immune sysmem was very weak and I also had iron deficency and had to take iron shots/supplements.

My twin sister has had her thyroid taken out. She also has some type of autoimmune disorder that I can't remember the name of.

Is the mono related to anything?

Hi Coffeegirl and Welcome back!

What I would suggest is to have the new tests and MRI's done and see what the results are. There are so many diseases and disorders that can resemble MS in many ways. You want to be sure that you get the right diagnosis.

Many of your symptoms could be MS, or even Migraines with and without the pain. Did you have a LP yet? If the MRI's show lesions in MS areas then get an LP or VEP testing.

I have many of your symptoms and a lot more besides those, but you need to fill the criteria to get a diagnosis, or have a clinical exam that is without a doubt showing MS, and tests to rule out other diseases.

I understand you are anxious to get a name for all your symptoms. I am sure you will, but it takes time. We all had to wait and it is hard, but in the long run it is better to be sure. I wish you luck and nice to meet you.

Just don't let them get to you when they say it's all in your head. Forget they said that, and just go from there. They all say that. Many have heard that term used. It just means they don't know.

So very sorry for all you are experiencing. Wish the answers were a little easier to come by. It must be very frustrating.

On the mono, I have heard and read that mono is suspected that it MAY cause MS. But then there is no way to know that for sure with you. I know my sister had a severe case of mono...but I'm the one who ended up with ms.

You have come to the right place for support. You do fit in here at NT...no matter what you have. Please stay around and keep us updated and feel like you can ask all the questions you have. AND a lot of times it has helped me just to have folks to talk with about things!!!

Thank you for your advice and support. I really appreciate it a bunch. It means a lot to me and it is very helpful. Just to hear from others who have been in some spot of an illness of some sort that is an unknown origin at one point of their lives where doctors have been cluless/unhelpful due to not knowing or not wanting to help, it makes a huge difference.

My family has finally came around and has realized that all of this isn't in my head either. After all of these years dealing with it too. It has been a frustrating road, humiliating, humbling and emotionally. I appreciate that I am able to talk to others about these odd symptoms that are driving me completely nuts here at this web forum.

Thank you. You are all wonderful here!

Coffeegirl

Hi Coffeegirl,
I've had ENG testing done, and you won't find it uncomfortable. I don't think the ENG testing has changed much even though I had it done years ago.

They might pour cold water in your ears, and you might feel dizzy during parts of the test, but they are testing to see what brings on vertigo if you have that symptom.

For me the ENG was part of the MS diagnostic procedure but I was diagnosed with MS before there were any MRIs. Nowadays they rely on the MRIs mainly, I think.

Vertigo is sometimes a symptom of MS but it can also be due to quite a number of other causes.