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My story, and answering questions

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Old 09-06-2008, 02:38 PM   #1
Senior Veteran
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
My story, and answering questions

I didn't want to hijack a thread, but I was asked so I'll respond here

Originally Posted by ellekay View Post
Yeah im terrified that they'll see a brain tumor or something of the sort that can be life threatening. Thats my number one concern.

I can deal with MS, cant deal with cancer.

What were your symptoms? And how old are you? Apparently is common in girls in their 20's. I am 28.
Don't quote me on this one, but have you had a CT performed yet? I believe that CTs will pick up masses, such as seen with cancer (of course, not always).

Don't, please don't, go on thinking it's cancer hun.

My symptoms, oh dear. I'll answer your easier question first. I'm 31 now. I was diagnosed March 5, 2008. Right after my 31st birthday. What a nice late present huh?

My first "symptom" I believe (I can't really attribute it to anything else) was stabbing pain shooting into my cheekbone/eye area on the left side of my head, during a headache that came on so suddenly out of the blue. I was out with friends at the time, and I requested my friend bring me home. Luckily I trusted my instinct, because the result was me on the floor clutching my head in complete agony. When I read about Trigeminal Neuralgia, this sounds exactly like what I felt. It was scary, and it happened 4-5 times over a few months.

I never went to get this checked out. Why? I've been a life long migraine sufferer. Plus, I was on Depo Provera at the time. So I quit the Depo shots, and I never experienced another bout of the stabbing horrible pains, so I figured I was in the clear. But I never forgot those experiences.

Fast forward a couple years, I began having numbness in my pinkie/ring fingers. I told my manager at work, and they had a woman come to my desk, adjust my chair, monitor, had me focus on posture. The numbness didn't stop. I figured it was a circulation problem.

Then I developed a dull pain in my left side of my face. It was worse when the weather changed. From my tear duct of my eye, through my cheek bone, to my chin. It was usually accompanied by headache as well. I went to work for 2 years like that. Over the counter stuff didn't even touch the pain.

It was when I woke up in January 2007, every part of me shaking, that I decided "Ok, it's time to get answers because this is unreal". That's about when I went off work (still on long term disability, pending the ok to return).

To complicate matters, I had been on a waiting list for a family doctor for ages. It's extremely difficult to get a family doctor where I live. Population explosion, shortage of health care professionals. So I went to after hour clinics where I could see doctors. Unfortunately, every time I went, I got nowhere. I saw a different doctor each time, and got different answers. "Sinusitis" "Migraine" "Maybe ear infection?"... it was bad. Finally, 1 doctor I had managed to get twice sent me for xrays. They came back clear. I went through 2 months of different antibiotics I didn't need. I also got put on various types of pain medications that sure didn't help me. Tylenol 3's, Oxycodone... doctors licking their fingers and holding them in the air to try and figure this out.

My case worker managing my work leave suggested a dentist. Found me a dental specialist, who I went to, had an EMG done, and said I had TMJ. Made me mouth splints to wear day and night to correct my bite. Some of what he identified was interesting in the long run. "Trigeminal Neuralgia suspected... abnormal swallowing". Hrm!

Before I went to pick up the mouth splints, this is when things got crazy. I believe it was in April or May, but I woke up feeling 'off'. Something was not right. I felt mildly dizzy. By that evening, everything was dropping. I'd look at something on my table, and it would appear to rise up, then I'd blink and it would be back in position, and it would begin to rise again. Over and over. Everything was a blur. My eyesight went from 20/20 to blurry/doubled, and I had this incredible vertical vertigo. I couldn't read a book period. The words were moving or a blur. Panic set in. I went to the ER, sat there for 10 hours waiting to see a doctor. This is when they kept me in, and CT'ed me, finding no problems. I was prescribed Serc, and sent on my way (Serc is used for Meniere's Disease, which they said "Maybe you have Meniere's").

That first bout lasted about 3 weeks. The Serc helped dramatically. Finally, the vertigo was gone, and I felt fine again. Then the vertigo eventually returned, only less in intensity this time. I went right back to the clinic and told them "Give me Serc". I didn't want them playing guessing games with me again when I'd already experienced this before and knew what helped. That second bout lasted about 2 weeks (I have not had that vertigo again since).

I mentioned this to my dentist, who said "TMJ can cause vertigo". Ok I believed him (and I'm sure it can, but that intense?). I got my mouth splints, and was off.

2-3 days after I began to wear the splints, I lost my sense of taste and smell. 2 weeks later, I developed a condition that I have to this day, burning mouth syndrome (BMS). I figured at first it was an allergic reaction to whatever material was in the splints (I have a lot of allergies), so I did continue to wear the splints, the facial pain went away in 3 months after I started, and my dentist remarked "WOW! You're the first patient I have had recover this quickly from your state with TMJ!" Oh dentist, if you only knew what was ahead at the time... perhaps you may not have put so much faith into your work. LOL.

BMS got so bad, I stopped wearing the splints. I just couldn't. Dry mouth as well. I was in agony. Think of a painful trip to the dentist, only you're living with it 24/7. Awful. I did find things that helped, such as Biotene toothpaste and chewing gum (why chewing gum works, I don't know. Probably since it increases the flow of saliva).

Then... my right eye began to twitch. A lot. I'd had eye twitch before. Usually when I was tired or overworked. I figured that was it. Until this twitching moved to my right cheek, and eventually into my right side of my mouth/chin. I burst into tears when I looked in the mirror and saw my right side of my mouth was being pulled upwards. What was going on?!

So back to the ER again. This time, bunch of blood work. They came back and told me "You're healthy, this is stress, get a lot of sleep". Ok, so I got a lot of sleep. 12-14 hours enough doctor? LOL. I was getting nowhere fast.

Back to the ER again about 3 weeks later, because this had not let up. This time, they looked and said "Hrm, could be Bells Palsy..." and gave me a prescription for Carbamazepine. Enter anticonvulsant #1, which I had a very rare reaction to, and quit 2 days after starting. They had also given me amitriptyline, which I seemed to tolerate fine, so I took that. In any event, the face was still going.

My dentist referred me to neurologist #1. He saw the twitching face, looked at me for all of 5 minutes, and said "You're stressed, go home and sleep". Here we go again, right? He also told me the amount of Carbamazepine they put me on was a top dose for epileptics, and to chuck the stuff (which I did), and he told me to toss out the Amitriptyline (ironic that I'm on that now, and its one of the best drugs I have found to help me in my situation). This neurologist also refused me an MRI. Flat out refused.

Back to square 1. We're now nearing Christmas. I was at my all time low now. I felt overall completely terrible. Miserable. Stressed and anxious. The most stress I have ever felt in my life. The face eventually began to calm down. I had been through CT #2, nothing again found.

My dentist had heard me complaining about my right ear a lot, so he sent me to an ENT (ear nose throat doctor). I was miserable when I met him. He went over all his work, checking ears, throat. I told him about all my symptoms. He took notes. He said, "I'd like to see you again in a month". Huh? Ok... but didn't you do your job already sir?

I can't remember at what point my 2 symptoms that my current neurologist used as 'proof' during my diagnosis showed up, but I was sitting at my computer one night, chatting with friends, and happened to bend my head down. Electrical surges through my hands and back. I went cold in fear. Lifted my head, bent it again, same thing. Electrical surges. I found the name of it. L'Hermittes Sign. I read "2/3 people with MS have this symptom". That is when MS entered my radar.

Then I had a symptom that took forever to put a name to. It felt like a belt wrapping around my torso. Some days lesser than others. Some days it was really annoying (not so much painful). Referred to as girdle band sensation. Some also call this MS Hug.

Well, I saw the ENT 3 times, over 3 months. On that 3rd visit, after he'd gone over my symptoms with me again, I said "Can you please send me for an MRI?". He said "Absolutely". So in I went in February 2008 (a year after I went off work) for the MRI. On February 19th, I learned the results. Multiple lesions, periventricular area, demyelination. My ENT looked at me and asked, "Did you go to University?" I said yes. "Did you graduate?" I said yes. The look in his eyes was one of sadness. He told me, "You're going to have a tough fight ahead of you". He couldn't obviously tell me "It's MS". But he had his suspicions (having talked to him after my diagnosis) from that very first time he saw me. I'm not the only person that's walked in his door and gone on to have MS diagnosed.

Anyways, rest is history. My ENT hooked me up with my neurologist, who did the rest of the testing. Evoked potentials, LP, extensive (and I do mean extensive) blood work to rule out everything. I was diagnosed finally on March 5, 2008. IV solumedrol for the first time beginning February 29th, 2008.

I began Copaxone in May 2008 (was a lengthy process to get the paperwork for the medication, bit of misunderstanding) and just prior to beginning Copaxone, I experienced a relapse. All my old symptoms (except for vertigo and L'Hermittes) came on full force. I even lost feeling in my right leg (I couldn't feel that leg at all) for several hours. Back on IVSM.

Since then, I've been doing much better. I had 1 period recently where I almost felt like I was entering another relapse (anxiety through the roof), but I didn't thankfully. I pulled through.

Sorry it's long winded, but there are new people here and I was asked to share my story.
RRMS Dx 03/08

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Old 01-19-2009, 04:11 PM   #2
Join Date: Jan 2009
Location: New Brunswick Canada
Posts: 7
kris72lm HB User
Re: My story, and answering questions

Hi I just read your post and I thought this person must live in Canada due to the long wait in the emergency room. I too am from New Brunswick. My family doctor suspects MS. I have my MRI tomorrow. About 10 years ago I was diagnosed with Fibromyalgia and 6 years ago TMJ which I had surgery for 3 years ago. Thanks for your story.

Old 01-19-2009, 06:42 PM   #3
Senior Veteran
Join Date: Oct 2007
Location: Ohio
Posts: 942
april1848 HB User
Re: My story, and answering questions

Hi Nenu, I've missed you! I hope you are doing well, and thanks for posting your story --it always kills me that it kind of all started at a dentist's office.
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

Old 08-01-2010, 10:49 AM   #4
Join Date: Aug 2010
Posts: 1
shawnad716 HB User
Re: My story, and answering questions

thank you for your story. I couldnt stop reading. So much sounds like what I am going through. Several years ago I was admitted prob 6 months off and on out of a year with what they kept diagnosing as idiopathic menengitis. Sever migranes and inflamed menengies. About a year after those symptoms had started another doctor told me that he thought I had MS. I was put on IV and oral steroids. I went from being a size 5 competing in martial arts to a size 22 needing help to walk and couldnt speak without stuttering. Within that year I was in the ER yet again and having my billionth spinal tap when an ER Dr. told me I didnt have MS but, had Intracranial Hypertension. I stoped the steriods and am down to size 18 and had not had symptoms for several years other than my vertigo that can last several weeks but, have meds for vertigo and nausea whenever I need it. Now several years later I am just discovering that there is no way that an ER Dr. could have just looked at my spinal fluid pressure to rule out MS. My eye sight is very bad that at times it looks as if the lights have been dimmed in the middle of the day. My chin twitching is going on 3 days now second time in 2 months that this has started. I have developed a turets like bark and twitch which is very embarrasing when it happens at work. I never knew that MS symptoms can come and go. I thought I was alone in these symptoms. Now if I can only get some medical insurance. I work in a hospital however I am per-deim so no insurance for me. Thank you again for sharing your story.

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