I'm new and in "mid-diagnosis" -- anyone else like me?

[jodiharley]

Hello Everyone!

Let me start by introducing myself. My name is Jodi. I am 39 years old and am now in the middle of getting diagnosed for MS. Let me give you a little history....

14.5 years ago I got diagnosed with optic neuritis. It was so horrible. It was 6 months prior to my getting married. I was completely blind in my one eye for almost 2 months. Luckily, I regained my sight before I got married. Anyway, back then I was tested for MS because optic neuritis is one of the main symptoms of MS. At that point, I had a clean MRI, but I do now remember going for an open MRI and they aren't as accurate I have heard. Anyway, I thought I was "in the clear". At no point did anyone tell me, hey...you got to come back every so often & get tested for this.

Circa summer 2011. Back in June, I had a sinus infection. But this time it was different. I had such dizziness that I couldn't even stand it. I took bonine and other over-the-counter Meclizine to help relieve the dizziness. Nothing helped. I started losing my balance too. I thought I had positional vertigo because everytime I bent over, I got so lightheaded and dizzy. Sometimes weird things would happen like if I was laying on my side on a bunch of pillows, when I got up to walk, I wouldn't walk in a straight line. Then I went on a child's amusement park ride with a friend's daughter. Oh my God!!! What was supposed to be "wheeeeee, this is fun" almost turned into a "911, what's your emergency?" --- I seriously thought I was going to pass out. It was a swing for goodness sakes. I was so sick for two days after that. During this time, little things started to happen that I didn't pay much attention to....

• When I wake up my hands are numb
• Sometimes I get horrible spasms in my side that wake me up and are sore for hours or days after
• Every so often I get a shooting pain in my arm from my wrist to my elbow and it goes away in about 15mins
• I sometimes have trouble finding the right words and get frustrated or will "trip" on my words
• I have a constant dull headache that nothing relieves it
• Sometimes my fingertips go numb for a little while
• The other day, my cheek felt like it went numb for about 15mins then it was fine.

So to make an incredibly long story short....I found out that my father (who passed away in 2007) got diagnosed with MS in his early 60s. I did not have a relationshop with him, but found out through a letter he sent me telling me his medical history.

So with these "signs" I thought I should go see a neurologist because I thought something was up. I was sent for an MRI and an MRA of my brain where the doctor found 3 lesions. However, they are further up on my myelin and not close to the cerebral cortex which he thinks is a good sign. But, he said they were too large to be migraine lesions. So he sent me for further tests because of my past "episode/exacerbation" when I had the optic neuritis 14yrs ago. He also said with the family history I am more prone to get MS.

I went for an MRI of my spine and luckily showed no lesions.

Last week, I went for the cognitive tests. I had a VEP and a BAER done. I am now awaiting the results of these tests. I honestly feel like I did not do well with my left eye on the VEP test. The BAER, I honestly don't know what anyone could get from that. It was just clicking sounds and I just had to sit there.

I am anxiously awaiting my appointment on Monday with the neurologist. He said he is trying to test all avenues and would only send me for a spinal tap if he was unsure.

Has anyone had a positive diagnosis with any of the signs/symptoms I listed above? I know that one could have lesions on their brain and/or spine or both and still have it.

I thank you all in advance and honestly am preparing for the worst yet hoping for the best.

[jodiharley]

I ALSO forgot to post that I have been having fatigue like I have never had before. Tonight is the latest I have stayed up in the past month. It is 10:20pm. I am in bed by 9:30pm the latest. I just happened to have a better day today than I have in the past month. It starts EVERYDAY late morning, early afternoon, I get dizzy. I feel like I've been hit by a train. My head starts to get heavy and my eyes start to hurt. I literally have to take an anti-vert and rest my head back on my chair at work. I fight to stay strong the rest of the day & come home to my husband and say "I feel horrible". I always just feel so sick. - I try to stay awake for as long as I can. I sometimes will take 2mg of Valium and go lay down and just go to sleep & hope I wake up with no symptoms.

[chucklebug]

I understand, jodie. I'm in limbo now with similar symptoms, although I haven't had the ON (fingers crossed!). I sometimes have trouble walking in a straight line, my hands randomly go numb, my feet are sort of numb and sometimes they feel like I'm standing in a campfire. I'll get brain and c-spine MRIs in December and am in the odd position of almost hoping I get a dx. At least then I can DO something. (I have 2 small, but suspicious brain lesions and constant L'hermitte's).

Hang in there, and I'm offering a shoulder if you need something to cry on. I'm on an emotional roller coaster myself the likes of which I've never experienced.

Mike

[jodiharley]

I understand, jodie. I'm in limbo now with similar symptoms, although I haven't had the ON (fingers crossed!). I sometimes have trouble walking in a straight line, my hands randomly go numb, my feet are sort of numb and sometimes they feel like I'm standing in a campfire. I'll get brain and c-spine MRIs in December and am in the odd position of almost hoping I get a dx. At least then I can DO something. (I have 2 small, but suspicious brain lesions and constant L'hermitte's).

Hang in there, and I'm offering a shoulder if you need something to cry on. I'm on an emotional roller coaster myself the likes of which I've never experienced.

Mike

Thank you so much for your reply Mike. I really appreciate it. I can totally relate to what you are saying. I feel like I'm on an emotional rollercoaster. I just want to know. I'm so tired of not feeling well & if I can do something besides "lay down" I will be so happy. I just want to know what it is so I can treat it and move on & enjoy my life again.

I'm the same way that you are. Sometimes my feet get so hot. Just last night it was crazy. My feet were burning hot & it is either the tops of my feet hurt or my toes hurt. Last night it was the toes. This morning I woke up & my hands & wrists were numb.

Some of my cognitive issues were that I really can't pay attention to things people say sometimes. I swear I feel like I'm going to "get caught" because someone will be telling me a long story & they lost me after the first two sentences. Then I'm like "Uh-huh", praying that they don't ask me a question about what they just said.

I LOVE horseback riding. I asked my neuro if I still can do it. He said yes unless I start to have vertigo on the horse. I have never - thank goodness. It is the one passion that I have. Well anyways, I was trying to tell someone that I am learning the trails to become a trail guide. It took me 3 tries to come out with the words trail guide. I had to think about it and say...tour guide...ummm I mean travel guide. Wait a minute...TRAIL GUIDE! I got so frustrated.

Thanks too for your offer of support. I can be a shoulder too. I will let you know what happens Monday when I go back to the neurologist. Hopefully he will have the test results back from my VEP/BAER tests. The office said that if he doesn't he will call the reading neuro doctor do it right over the phone as "a courtesy". UGH! I hope this doesn't cause more waiting.

I will also keep my fingers crossed that you don't ever get ON. It was terrible. I had the "MS kind" --- retrobulbar optic neuritis. That is whay I had to get tested. No one ever told me that I should go back and get tested yearly or every couple of years. I thought I didn't have MS 14yrs ago and I was in the clear. Who knew?? The three lesions have grown since then & I could have avoided or slowed down whatever this is (if it isn't MS). I can think back now over the past 14yrs to so many signs that I just looked over.

Good luck in your journey & I hope that you find an answer too.

Jodi

[dpmich]

The waiting for a diagnosis is a horrid time. Whether you find out in a day, week, months or years. I feel such deep sympathy for ALL people that land in limbo for so long. It sounds as though you both have some of the "classic" symptoms, but it sounds like your Dr's are being very thourgho. Another thing to be checked on for the vertigo/dizzy is to be tested at an ENT for Meniere's. It also is an immuno compromised type of problem.

It can cause the vertigo and in my case loud horrid buzzing in my right ear and decreased hearing, so I think. When i was testing for that, the Dr was surprised at how well I could hear. I reacted violently however when they do the "re-set" of your inner ear crystals. I was in the normal range for my left ear, but when they went to the right it went off the charts bad. They mercifully stopped the test before the time was actually up, they saw how bad it was. My vertigo sessions come and go and thankfully when i do the re-set it helps for awhile. They can teach you that or a PT can. If part of your vertigo is BPPV the re-set is a God -send.

Anyway this thread is about you 2. You are always welcome here, the members and Mods are so wonderful to lean on. I come here in spurts. When I start to feel the MS coming on, like a tidal wave almost, I come here and read. It helps to know that other people feel what you are feeling, thinking and emotional support. I have been here for 5 years and am so very thankful that MS World exsists for us. We are indeed on a wild-child ride with this MS in our lives. I pray that yours will settle down and you can start getting treament or make the discovery of what helps YOU to feel better.

Debbie

[0485c10]

check my treatment profile below, it was optic neuritis when a doc told me this might be ms and 19 years later before i was told it was ms.

doc who diagnosed me said sometimes it takes a while for ms to become "visible" enough to diagnosis. and it was a very positive for me that it had taken a while to become visible enough.

first doc to treat me told me, in answer to my questions "when should i have known?" said "we can never diagnose the past in the present what happened in the past may or may not have been ms, we will never know now what it was"

my present neuro has said with regard to the issue "I don't treat the past i don't treat the future i treat the present"

MS is currently thought to a combination of an unknown envornmental trigger & a genetic susceptibility. not directly genetics because there have been cases of identical twins where only 1 twin got ms & if it was passed in the genes both would have gotten ms or neither would have.

the genetic susceptibility is thought to be from people of northern European decent. your father have any northern European heritage in him?

I have a germman-czek-dutch bloodline. and a cousin with MS also. my doc told me he didn't think that my cousin having MS mattered he thought it was more probable the area i grew up(settled by german-dutch, btw) was important to my getting ms. WI has a high rate of MS. And pretty much everyone seems to be living in a high rate of MS area. I believe Scotland is the country with the highest rate now, but i believe Canada is close.

when i was diagnosed, very unexpectedly based upon a single MRI within 1&1/2 hours that showed extensive white matter damage from ms---confluent lesions, ring enhancing lesions, a black hole, dawsons-like fingers...the mri was done & on the spot it was diagnosed as MS...like i said 1&1/2 hours.

i had to read up on the ON that a doc had told me 19 years before might be ms.

ON is the most common onset symptom for people who have MS..
but only 60% of people who get ON, eventually go on to get MS. 40% of people, the ON will be caused by something else or it will be an "idiopathic" symptom, a symptom without a cause, like a fuv, a fever of unknown origin. the nervous system has a one time glitch it resolves itself and a reason for it never needs to be found.

actually there are meds for ms, but they do make a person feel scummy all the time. at times i don't know if its the meds or the ms making me feel "scummy"

now i am diagnosed for 7 years and i am grateful for the 19 years i did not know.
i'm grateful too that the episode that made it visible enough for diagnosis did not happen sooner, it does mean that it was better for me.

[WendyEdelman]

Mom Wendy

Hi, my name is Wendy. I just had a MRI of my brain, and the report says, increased T2 and FLAIR signal is seen at the superior aspect of the left basal ganglia. Every time I google this it sends me to an MS web page. I had Evoke test that show no response from my brain to my right arm. I hurt all over, a dull head ache that never goes away. My hands shake every once in a while for a few minutes. I had a spinal, which showed nothing. Blood test show an RA factor is up. C-reactive proteins are high. I have arthritis in my upper neck and some fusions, that my neck and upper back go numb. My right are from my shoulder to my finger tips go numb. I have been diagnosed with fibormialgia. On many pain pills and other drug for pain. But the MRI still worries me. Any help or advice would be greatly appreciated.

[0485c10]

On many pain pills and other drug for pain. But the MRI still worries me. Any help or advice would be greatly appreciated.

brain lesions can be caused from stress, prescription or non prescription drugs, age, many other diseases like diabetes, crohns to name a few, low b12....+ many other things.

[Luongo]

I ALSO forgot to post that I have been having fatigue like I have never had before. Tonight is the latest I have stayed up in the past month. It is 10:20pm. I am in bed by 9:30pm the latest. I just happened to have a better day today than I have in the past month. It starts EVERYDAY late morning, early afternoon, I get dizzy. I feel like I've been hit by a train. My head starts to get heavy and my eyes start to hurt. I literally have to take an anti-vert and rest my head back on my chair at work. I fight to stay strong the rest of the day & come home to my husband and say "I feel horrible". I always just feel so sick. - I try to stay awake for as long as I can. I sometimes will take 2mg of Valium and go lay down and just go to sleep & hope I wake up with no symptoms.

I could certainly be wrong about this, but I think extreme fatigue, and drowsiness/tiredness is a side effect of Antivert... you could explore that a bit.