How did your MS start?
 

Hi, I'm usually in the parkinson's forum. I am close to my ex-wife and have heard through the gapevine that she thinks she has MS. She has insurance starting in Jan. and has an appt with a primary care to begin workup. Could you tell me some of the "common" symptoms, how your condition started, etc.

Two bouts of optic neuritis followed by bouts of lower extremity spasticity and numbness and dizziness.

With love, Erika

For me, it was visual problems, blind patches, double, graying and bouncing of vision, instability (as in tripping over everything), numbness, tingling in hands feet arms and legs, bladder urgency/incontinence, extreme fatigue and major confusion and forgetfulness. I also had left-sided spasticity and crazy reflexes.

I think I ticked lots of boxes, but I am sure I had a few 'attacks' before the one that led to diagnosis, because I had lots of new and old lesions on my MRI.

I hope your ex-wife finds the answers she needs to treat the problems she is experiencing.

Regards

Lyn

No visual problems, dizzy, had to pee a lot, just a feeling that something was wrong. "Luckily" evoked potenials and LP showed problems or no one would have believed me.

Numbness in legs, visual problems, balance problems but the instances of unbalance were so far apart and infrequent I didn't pay much attention to them.

I was diagnosed in 2005 at 45 years of age but looking back I had subtle symptoms since I was in my 20's. Just nothing severe enough for me to check it out.

Severe double vision in 2005 got me to the neurologist and subsequently got the diagnosis.

I remember my first symptom being facial numbness and then tingling in arms and legs then balance problems.

I hope you are going to be supportive of your EX. Sounds like you care. And I hope she is supportive of you too. :hug:

Hi Jim! How nice of you to be concerned/interested about your ex wife.

Many years (apprx 1990 - diagnosis came in 2000) before any other symptoms, 2 weird things happened that I now believe were my very first symptoms. One day, my head fell over. No pain, I simply could not hold it up. And for a short period of time I had a numb spot on my thigh. Felt like my pant leg was wet and someone was fanning it.

From 1994 -1997 I had 2 bouts of Optic Neuritis and Uhthoff's Sign was off and on. During the ON everything from line of sight down was...gone. When reading I only saw the top half of letters. Uhthoff's causes colors to dim, usually when the body gets overheated (even slightly). When outside on a sunny day it was as if a dark cloud had blocked the sun.

In '00 the real attack occurred and most of it remains to this day. Loss of bowel and bladder control (mostly gone, whew), extreme fatigue that made me feel like I was walking underwater; when I wasn't dragging my right leg it was swinging out.

Good luck to your ex wife! Hope she has something treatable/curable and not MS.

I remember it clearly. It was my 14th birthday. I had been having strange symptoms - mostly numb areas on my legs and areas that tingled for no reason. On that day I started to have major pain on the right side of my face. I told my mother, a registered nurse, and she brushed it off as nothing of importance. I remember thinking that some day I’d find out what was wrong with me, and I made a mental note that this symptom happened on my 14th birthday. Yada, yada, yada – I was diagnosed with MS at age 59.

hello,
i started to have a gait problem which worsened.
i also had what felt like shots of electrical wooshing in my left leg.
i also felt off balance.

my dr did a neuro exam...abnormal. she sent me to a neuro...abnormal.
mri showed lesions in CNS. LP was + for O-bands.

i hope your ex finds out what the problem is. knowing is half the battle.

Normally an extremely healthy person, I had weakness in my spine and legs and was falling, among other things but those are what got my attention.

Slight vision problem in left eye, as if someone had smeared Vaseline over my eye. Still had 20/20 vision though. I was a couple of months shy of turning 40. Eye docs kept blowing me off. A couple of weeks later I started feeling dizzy while driving (imagine going on a nauseating carnival ride and then immediately jumping in the car).

Oh, and like Kicker I just knew "something was wrong" with my body. -- I had a general sense of being that felt like nothing I had ever felt before. I kept telling my husband "I think something is really wrong." I could swear I had this weird sense of minor vibration through my whole body.

I had never had any weird symptoms prior. The MRI confirmed it with 9 old and new lesions.

But everyone's case is entirely unique.

Good luck.

I love this thread. It shows how completely different the same disease can be among people. No wonder it's so misunderstood.

Well, I have had symptoms since I was a kid. I was labled a hypochontriact by my mother so I learned to stay quiet and not complain.

I was 24, married for 4 years and my husband did alot of business travel. I was out mowing our lawn one cool spring morning while he was gone. Usually I could mow both front and back without a problem...not this day. I got half way through the back and my legs became weak, numb, pins and needles sensation. I needed to go sit down and ended up falling asleep.

I got up the next morning feeling fine, confused about the previous day. I once again went out to mow and my legs once again got numb, weak and with pins and needles sensations, but in a much shorter time...I never did get the lawn finished after that. Slowly, over days/weeks I started to add in more symptoms. By the time I thought I needed to see my PCP I had lost most of my strength and mobility.

Symptoms that remained during the entire diagnostic process:

- Bi-lateral leg weakness
- numb from the waist down
- tremors
- fatigue
- pins and needles
- vibrations from waist down
- pain
- L'Hermittes

Hi Jim: In the spring of '06 (age 53) I started limping and was winded when walking. By November I had bad pain in my feet (later found out it was nerve pain). The severe pain was what brought me to a doctor. When the doctor observed my gait he ordered an MRI which dx me as having MS. I also hope your ex doesn't have MS, but we are here to support her if she does - you've come to the right place!

In 2008 I just started a new job. Within days, I developed horrible eye pain and dizziness that lasted for weeks. Also had trouble focusing, I felt very weird, very off. I went to my doc who ordered a MRI which showed lesions, then went for LP which showed 11 O bands. Every other disease was ruled out. I was 47 when I was dx. Years before my dx I experienced years of RLS (restless leg syndrom). Never thought much about it, just had my husband massage my legs to make it go away,also started getting it in my arms too. Also, about 18 years ago, I recall getting out of a jaquize (sp) and couldn't walk. Felt much better after getting out of the pool. I never thought to much about that till after my dx. My memory also started going about 8 years ago. I wrote that off as peri meno issues. My memory is even worse now.
Good luck to you both. If your wife gets dx with MS, have her visit this site...there is so much comfort here..and caring people!!

Erratic blood pressure, insomnia...multiple days in hospital with misdiagnosis over yrs. Based on amount of lesions in brain & spinal chord they suspect I may have had it since my teens (now in md-40's). Last 6 years there were ER trips and hospitalizations for stroke level BP and "exhaustion" they only found the MS about 18 months ago. Seems all those hospital incidents were more than likely relapses. I always thought it was funny how I could be exhausted and hyper on 2-3 hrs sleep at the same time. I wish the best for your ex-wife and tell her to trust what she feels with her body and not to let the doctors quit until they figure it out.

Mine was total loss of hearing in one ear while sitting at my desk at work. It took about 5 seconds to go from totally normal hearing to completely gone, and it took about 8 weeks before it started coming back. It has come back to nearly normal in terms of hearing deficit, but I have tinnitus that comes and goes now and I don't process sounds very well in noisy environments anymore. For example, I have a really hard time hearing a conversation from somebody right beside me when I am in a noisy restaurant.

I was told from '05 on that my symptoms of numbness in toes, neuropathic pain, balance problems, restless leg syndrome, incontinence, vibrations, vertigo, etc were due to fibromyalgia, migraines, all sorts of things. My lesions weren't in the "right" place in my brain.
Got diagnosed in late '08 when my legs locked in spasms. It's a process of elimination and fitting into the McDonald criteria for MS.

I was "textbook" MS. After my GP and a Neurological ophthalmologist failed to see anything without tests, my GP sent me to a neurologist making me promise to stop looking for answers after him. I showed her!!! :D After 2 weeks of LP. EPs, MRI, tests- he diagnosed MS. She (my GP) let me cry on the phone to her after she called when she found out about DX.

I was told I was "textbook MS" too. Woke up one day in January 1988 with the vaseline vision in right eye (ON). Couldn't see at all out of it. Pins and needles lower right leg, right hand, and right side of face. Fatigue became a problem right away. And a very annoying stabbing pain in back of neck.

I was on a waiting list for an MRI for over a year, but yeah. There were lesions. There was only 1 MRI machine in Toledo at the time.

Tom

How different we all are and yet, how much the same.:grouphug:

It's hard to say in my case, honestly. I began having wicked 'headaches' or 'migraines' in 2000/2001. Chalked that up to the building I had been living in at the time and something in the building materials. I felt fine after I moved out.

Jump ahead to early 2004, I had a laposcopy, found severe endrometriosis, surgery... then I was hit out of the blue with what I now know is actually Trigeminal Neuralgia. <~ this was probably the point when I first thought to myself "Okay something's not right with this..." I felt like I was going to have a stroke, if not, had one already.

Moved, TN attacks subsided, guessed building materials again. Moved into house in 2005, spent the next couple years with symptoms increasing, namely pain/pressure around my left eye. I thought it was due to weather changes. I was in a world of pain, missing a lot of time at work, etc.

Then I woke up in January 2007 freezing cold, and shaking (maybe spasms the way it presented). I couldn't control my body to stop it, so I got into warm water (which actually helps me, unlike many with MS), got warm, went back to sleep. Woke a few hours later drenched in sweat. This was the point where I finally said "Enough is enough" and I went off work, on short and then long term disability, to an eventual MS diagnosis (it wasn't as easy as I remember it now, the first neuro I saw fluffed me off completely, I went through a dental pain specialist and several doctors before an ENT paid attention to what was going on and got me the right doctors to help me).

So Cliff notes: I believe my onset symptom of MS were those Trigeminal Neuralgia attacks back in 2004. I was diagnosed in March 2008, my neuro suspected I'd been living with MS for at least 5 years prior to the diagnosis.