Hello everyone. I'm scared to death, but I'm hoping for some straight answers here. I'll try to be consice so this doesn't get boring. I've had so many injuries, it's also kind of confusing so I am going to present the info according to my symptoms instead of in story form.
Hands - my right hand has been going numb off and on for 10 years now. I assumed it was carpal tunnel and it may be partly that. But over the years, it has progressed to both hands, and has turned into intermittent periods of burning hell-fire at night and horrific, aching pains. Wrist braces do nothing. I have lost much dexterity in my hands, especially the right. Was recently on 13 days of Dexamethasone and my hands almost completely came back! It was amazing! Now, six days off of the steriod and my hands are going numb again.
Neck - starting aroung 5 years ago, started having an electric feeling run down the back of my neck, just a little left of center. Felt like a mouse with electric feet. I had fallen on my neck 4 years earlier and broken my collar bone at the same time, so i assumed it was from the neck injury. In 2017, the pain became so much, I saw a neurosurgeon who did disk replacement surgery. At the time, I presented with extreme dizzy spells (for about a year), numb, tingling, painful hands, urinary incontinence issues, fatigue, brain fog, severe tinnitus, and of course, severe neck pain along with the shooting electric feeling down my neck. He said the neck pain wasn't causing any of the other symptoms, did the disk replacement surgery, and that was that. No more neck pain. I rarely have the electric shock down the side of my neck anymore, but all other symptoms have worsened. No attempts were made to address any other symptoms at that time.
Dizzyness - I have these terrifying dizzy spells that feel almost like a out of body experience. Like I'm lifing away from my body and everything else is getting further and further away while things are kind of waving around. Its surreal. When this happens, I have pulsitile tinnitus and I feel nauseous and I can hardly stand. When THIS particular type of dizzyness isn't scaring the hell out of me, I'm just generally dizzy and nauseous 24/7. Since no one seemed to be listening to me, I finally decided I might have an inner ear problem. I had heard inner ear problems could make you dizzy, right? So I went to an ENT. He noticed I had a throat infection and gave me meds and tried to send me on my way. I had to say, "Now wait just a darn minute. I didn't come here for that. I came here because I'm always freaking dizzy and no one will help me with that." So he agreed to order some balance tests. The tests came back saying I had SSCD. Superior Semi-circular Canal Dehiscence. Means I have a whole between my ear canal and my brain. Ta-daah! There's the reason for the dizzyness! Except it wasn't. After two more specialists and me insisting I wasn't going to have surgery THROUGH my freaking brain just to get to my ear for them to figure out that WASN'T my problem, I've been through yet another bogus diagnosis. NEXT, I was told I MUST have vestibular migraines. Makes sense right? I had the headache kind of migraines from the time I was about 12 years old until they just kind of passed at around 30 years old. But suddenly, I'm told, they're back, manifesting themselves as vestibular migraines WITHOUT the headache. Hmmmm. Okay. But what about the numbness in my hands, the burning hell-fire, the aching pain, the aching in my legs, the horrific leg cramps at night for years, the urinary incontinence for several years, the complete loss of libido that happened suddenly about 4 years ago and hasn't come back, the numbness starting in my feet.
I've undergone four months of various treatments for vestibular migraine. Mostly just different drugs/combinations of drugs, etc. Nothing changed until I was given dexamethasone. My hands came back to life and the big, scary dizzy spells seemed to lighten up a little, but didn't go away. Still, the change in my hands was phenomenal. I hadn't realized how bad they were until they came back. But now, five days off of dexamethasone, and five days into a bad stomach virus that everyone else was over after 12 hours, my hand symptoms are coming back. I've been nothing but sick for the past two months. Cold after cold, and now this stomach bug. MRI has been ordered. Seeing the neurologist May 30 unless there's a cancellation. Nothing to do but wait. Except I'm sick and I'm missing work and I don't know what to do. Can't get over this stomach bug. Saw GP yesterday for meds but they haven't worked yet. Don't know what to tell them at work.
I could go on and on but I'm kind of freaking myself out, if you hadn't noticed...so...what are the odds that I DON'T have MS? I fear it's not looking very good...Honesty please...
I am glad you have an appointment with a neurologist coming up because they will be the best person to determine if MS is causing your symptoms. I included some links about Possible MS and what to expect during the diagnostic process that I hope will be helpful:
I also encourage you to view the information about Employment and MS
. It provides information about your rights and employment options. You may specifically want to review the information about The Family Medical Leave Act.
Stephanie, MS Navigator
I could go on and on but I'm kind of freaking myself out,
As trite as it sounds and as easy as is it to say, don't do that. Stress in our lives isn't good/healthy, doubly so if you have MS.
what are the odds that I DON'T have MS?
They're high that you don't have MS. So let's hope for that. We're a selective group and fortunately are only .003 (0.3%) of the population. :)
There are a couple of health issues that can mimic MS, but the only way is to see a neurologist (preferably one with some experience with MS) and do a bunch of tests and diagostics.
Thank you. I hope you’re right.
OMG I'M SO SORRY. Someone should had caught this by now. How horrible you must have felt going through all of that and no one ever thought of MS not even the so called neurosurgeon. How horrible. I started getting the electric shocks going upwards into my head and I'd fall to my knees when that would happen. I hope that they figure this out sooner than any later. As it stands you sound pretty far into the MS . I've had it for years and my issue's have just changed from bad to worse just recently. So I feel your pain and agony you must have gone through. At least maybe now they can figure this out and get you the right treatment to help you. I hope the best for you.
Thank you so much! I appreciate your support.
As, Stephanie pointed out, it is crucial that you get in to see a neurologist. My Mom has fought ms; it took a number of years to diagnose, because, not knowing what was wrong, she went to general m.d.'s (family practitioners) and not a specialist (neurologist) As, from your writing, it seems a strong self advocate, if your family doctor is not recommending a neurologist, insist that she or he does. A neurologist is vital with your symptoms, I don't mean in any way that seeing a neurologist automatically means you have ms, your symptoms may be pointing to something else, as well; although a neurologist is the primary specialist that can help you find some answers to your symptoms. I can relate to all of the uncertainty that you are feeling, I know it is scary so make sure you rely on family and friends to help, this includes, most importantly, for you, having someone whom you can express all of your feelings to. If you don't have anyone within immidiate access, my name is Chris, and I will listen. I don't like to look at odds, because odds are so uncertain and you don't need any more uncertainty at this time (Odds are very odd) Let us know what you find out, we care very much, ms or not.
Thank you, Chris, for your kind words. I had an MRI today. Should know something very soon. Appt with a Neurologist on the 30th but I’m hoping my Otoneurologist will give me the results sooner. I really appreciate your willingness to listen and really hear me. I’m very scared. This is affecting my job, my life, everything and I need answers. Hopefully, I will have them soon. I’ll let you know... 🌻
You are welcome Dizzy. I haven't been on here in a few days, so I apologize for the late response. I know how scared you are, I have felt that fear for my Mom, you are not facing that fear alone, I am here to help, as I know many on here are as well. I keep you in my thoughts and prayers, and hope that your MRI on the 30th goes well. Let us know what you find out. We are here, hoping, caring and listening for you.
Thank you for your prayers, Chris, that means a great deal to me. My appt with the neuro brought only more questions and fear. Some of my symptoms were signs of Parkinson’s. Significant side to side tremor in the middle and pinkie fingers of my left hand, slower movement of my right arm, tremor in my voice. I thought my voice just got weird from the disc replacement surgery I had in 2017. The finger tremors are new within a month or so. I wasn’t expecting Parkinson’s!!! But my other symptoms are suspicious too he says. My brain mri was normal so next week we’re doing a cervical spine mri & an EEG. He’s also scheduled a nerve conduction study & EMG, and a referral to a neuro psychiatrist for some Alzheimer/dementia/Parkinson’s tests. They drew blood to test for lupus and other autoimmune diseases to rule them out. Dr says I don’t have vestibular migraines and he took me off the meds for that. We had a very frank discussion. He really listened to me and I asked a lot of questions. I have definitely found the right doctor. Still, I’m more afraid than ever...thank you for letting me vent...