What Event/issue led to getting MS Dx?

[gomer]

I am just curious, not paws or claws, no tail, I don't even purr..........lol

Here goes the QUESTION?

What event (or series of events) actually led to getting the needed testing that led to your actual MS diagnosis?


IN my case it was a new eye doc I went to last summer with the express reason to get my diplopia prisms update, (they were in bad need of being updated).


That, after decades, more like 45 years after the fact, led to for a change being taken seriously for a change. I had a MRI in spring 07, serious foot/ankle problems since summer of 07, braces, P/T, AFOs, cane, walker etc, but NOT one doc BOTHERED to follow up at the time, same as in the past).

After the new eye doc raised the possable MS question last summer,

B I N G O!

MY famDoc called me the day before my general neuro apt for a MS "it fits" talk. many test docs etc later, the VA did yet more brain & full spine MRIs which prompted my RRMS Dx. Further testing, EEG, EVP, LP all backed up the already given Dx and I started Copaxone.

NOTE:......I have greatly abriviated the complex messy path to my formal Dx.

Doc Gomer A curious dude

[cosake]

Hi Gomer,

Great question !

I woke up one morning Jan-2010 with blurred vision in my right eye. Got eye drops from regular eye doctor and scheduled follow up for 1 week later. Woke up 6 days later with no central vision at all in right eye. Went to follow up appt. and he sent me to eye specialist. Did a bunch of eye tests I'd never done before and different techs in and out to check things. Then Eye Dr. came in and looked at my medical history and noticed I was on Detrol at the time. Asked me about any other medical issues I'd had recently and I mentioned numbness and tingling in left hand that had been diagnosed as pinched nerve and treated with physical therapy. Then he dropped the bomb and said "I think you may have Multiple Sclerosis". I was totally shocked and didn't even really know what it was at the time. I got into a neuro consult that afternoon and they did bloodwork and scheduled brain MRI. Got the MS-CIS diagnosis a week later. In between I did IVSM at home and the eye started to clear up. Almost back to 100 % now, but I can tell there is a slight blurriness, and I still have 20-20 vision with my contacts in.

I elected for a 2nd opinion and had more MRIs, bloodwork and an LP done and just started Betaseron a few weeks ago. I'm still technically diagnosed as MS-CIS, but the neuro says "You have MS".

Sorry if this is long. I look forward to seeing everyone else's replies.

[celms]

MS Dx

I woke up on Thanksgiving day 2008 and my right foot felt like it was asleep. As the day went ton the numbness traveled up my right leg and than up my entire right side. I did not have any health insurance at that time so no doctor would even see me. So I had to buy my own health insurance(which is expensive and as it turns out does not cover MRI's). I went to my gyno and told her about my right side. She said I should see a neurologist and gave me a card to contact one. Got an appt with him and explained my symptoms. He said it's either MS or nothing. Had 2 MRI's and a spinal tap. All this was in June 2009. In July 2009 I was told it was MS. So it didn't take long once I got to see a doctor. The insurance I have is terrible. I can't afford any more MRI's to see if anything has changed in the year since then. Now almost 2 years later the numbness on my right side is still there. Don't think it will ever go away or get better. Just have to get used to it. My doc says it is all sensory problems that I have and no one will treat that. oh well. That is my story and thank you letting me get that out!

[truckin]

duh

In December 2004 I was having constant headaches between my eyes and back of neck. My PCP at the time referred me to a neuro who said it was tension headache and let me go.

It got worse, so I had to lobby my PCP(jerk) to refer me to an ENT (excellent doc), who did cat scan and showed me the films. Said I should see a neuro in case of trigeminal neuralgia, so that if I needed surgery I should get it while I'm still young (lol).

6 months later I get in to see another neuro--an absolute jerk. Meanwhile, my PCP-jerk at the time said, "I don't see why you need an MRI, they'll never find anything."

There were cerebellar lesions, then they did the LP, bloodwork, etc, and I was DXed MS in August 2005.

Like many of you, just by chance.

[Justsayyes]

Woke up about a week before Thanksgiving (thought I'd throw that in for you celms........) numb from my private area down my sciatic nerve into my foot. Couldn't feel myself going to the bathroom.

Treated by my sports doc for piriformis syndrome, which is similar to sciatica. Lumbar MRI normal. EMG normal. A round or oral steroids decreased the numbness significantly. After several months, I complained of continued numbness, and he referred me to a neurologist at a pain center.

A few months earlier I had a bunch of tests for blurry vision that happened suddenly. Opthamologist treated me for dry eye.

Neuro at the pain center ordered brain MRI (some lesions that could be migraine related), visual evoked potential (abnormal), and finally a lumbar puncture (abnormal). He didn't think I had MS, but the tests kept pointing in that direction.

[Splendid]

Bells Palsy in September of 08...just out of the blue. No symptoms prior to that. They did a "routine" MRI because of some links to MS. MRI had non-enhanced lesions, did LP...it was negative. A year back and forth, probable ms, possible ms, not ms, you have ms all based on the same data and stable MRI.

Tingling started in arch of both feet. I started Avonex...now on Copaxone which I LOVE in comparison. Second opinion coming in a week and half. Not expecting a different diagnosis, but want to get in with a MS specialist so I can be somewhat sure they know what they are doing.

[piper]

I've had "weird" things on and off for several years. I never pursued it much as the symptoms were always attributed to other things.

First, when I was 22 I had a very bad case of vertigo. I went to the ER, the doctors actually said "be on the look-out for MS". I was 22 and said "ok, whatever!"

When I was 32 I was pregnant with my 3rd child and my back and left side went numb. I actually saw a neurologist at that time. All he did was make me walk a straight line and touch my nose. The neuro and my ob doctor assumed it was the baby laying on a nerve. Sounded right to me.

In the last 5 yrs I've had intermittent numbness on my left side, back, feet, etc. I would go to my PCP and he would give me a package of steriods. The numbness never went away completely though. He thought it was a pinched nerve in my back.

I woke up Feb. 14th of this year completely numb from my shoulders down. There was a terrible tight feeling (turned out the be "The Hug") around my torso. Saw my PCP who ordered full spine MRIs. Because my insurance lacks common sense I had to do the MRIs on 3 different days. They started with my cervial area. The MRI tech noticed lesions, called my PCP and they ordered a MRI of the brain.

My aunt died from a brain tumor at age 40. I am 38. I was praying it wasn't a brain tumor! Turned out to be MS.

I have not fully recovered from the flare that began in February. In fact new symptoms came about since then. Vertigo, weakness, fatigue.

I'm on Betaseron now. I've had one round of IV steriods.

I like this thread. It's going to be interesting to read everyone's stories!

[julierooster]

Husband on May 4, 2010 woke up with left side-- arm, torso, leg, being "heat sensitive"-- hot flash feelings, temperature of water couldn't be detected well on that side. Kind of had a "numb" feeling to it. Went to the PCP the next day, said it is probably nothing, maybe a pinched nerve, although it would be strange because it affecting both the arm and the leg, said wait a couple of weeks and call a neurologist.

He said that something big was wrong. He could tell. But, he went to a chiropractor to be treated for a "pinched nerve". I don't think we even waited a week before we made a neurologist appointment. Husband's uncle has MS, so that was always in the back of his mind. Neurologist did tests, suggested an MRI. It was my husband who asked the doc, "What about MS?" Doc's response, "Its in the differential." Fast forward to the Thursday before Memorial Day, and results of the MRI back confirming lesions.

Switched neuros, (didn't like the vibe we got from the first.) New neuro got results from the LP (only 2 o-bands) but decided to start him on DM drugs even though its not a "slam dunk" case of MS.

[RedTalon]

For me it was simple, i had real problems walking and weakness, and an annoying internal shaking plus kept tripping. Had a small episode the year before but it cleared up, so when it happen again grumbled and went to the doctors.

[Bob698]

My SX go back to 1998 when I went numb pretty much all over one day. I wasn't sure if I had a mild stroke and called 911. Docs in the ER checked me out and said they couldn't find anything and it was probably due to a weird flu that had been reported in the area. I went home with a bill for the ER visit and an ambulance ride ( I lost my ins. the year before when I got laid off). The SX went away after a couple of days and I blew it off.

Moved back to the family homestead later that year to care for a parent. I'd feel the SX slightly and blew it off thinking it was just me getting old. In 2002 I woke up one morning and noticed the vision in my left eye was blurry, that fog you get due to "eye boogers" but I couldn't get it to go away. Still no ins. so I went to the local clinic where a PA finally told me it might be MS or I might have a brain tumor but since I didn't have any headaches it was probably MS, have a nice day. That was when I got back into shape and started eating right. Pretty much blew it off again since no one was in a hurry to treat me and learned to cope with the bad eye. Tried some state programs trying get an MRI but they went no where.

By 2008 I was trying to get out of northern Maine after my parent had passed and I'd wrapped up the estate. I was doing some vollunteer stuff for the VA because one of the VA reps was also doing job search councilling for the state and helped me a lot with some resume stuff. He kinda noticed one day a slight tremor and I told him about the eye and the "probable" MS. He asked me why I hadn't talked to the VA, I told him, then he lower the boom on me and I talked to the local VSO and got that stuff rolling. By then the tremor was getting worse and my right side was going weak. Found a couple of temp jobs but they only lasted three weeks each before I'd get canned, it was pretty obvious by then there was something wrong with me and I couldn't hide it.

In the meantime, I had re-connected with some of my Navy buds and we were keeping in touch over the phone or through e-mails. Finally got my appointment for a VA physical and they must have sent me down on Crabby Day or Bad Cop Day. Pretty much felt like a wino drifting through town, at one point the Neuro told me "I can say its MS if that's what you want" . What I wanted was a DX, not a way to scam out. Told one of my buddies what was going on and he said "Dude, I think you're getting screwed. Let me make some calls and I'll call you back tomorrow". He calls back and says the VA in Iowa really wants to talk to me and they're pretty PO'd at the VA in Maine. I have a place to stay as long as I want to and he can have a ticket waiting for me at the airport. Three calls later he talked me into it.

[elmo2010]

May 2009 my abdomen went numb, and a tingling feeling would travel up & down my left side for weeks i'd poke at my belly. I could feel it in my finger but not in the belly.

June 2009 my hands were constantly tingling lasted for months & finally got to the point of driving me nuts so i went to the doctor.

Pcp didn't seem that concerned, thought it might be carpal tunnel, but referred me to the neuro, because "the abdomen thing is weird" even though it had stopped by now.

neuro tested for carpal tunnel - no, did evoked potential testing - all good except for slight delay in left leg. February went for brain MRI - showed lesions - MRI 10 years earlier with same neuro for headaches was clear. thinks its MS, sends me for a spinal mri & refers me to MS specialist
April 2010 - 2nd MRI & specialists confirms MS
July 2010 - started on Rebif

So I have not had to be in limbo for very long at all compared to others here, although looking back i've had sx for 7 to 8 years prior to this dx, just never did anything about them.

[DancingPhalanges]

I had 3 separate incidents where I had numbness and vertigo before I went to my GP. She was going to schedule an MRI for me, but I'm impatient and after about a 1 1/2- 2 wk wait and worsening numbness I went to the ER knowing that with my symptoms they would give me all the tests I needed to get rolling. I already had a pretty good idea what I was up against at that point anyway.

[ewizabeth]

August 2002 getting ready for vacation, went out on my morning walk before packing and legs and spine turned to noodles. I was very athletic and this frightened me. Didn't tell DH about it until we got up north, then when it started to get worse I told him.

I didn't think it was a stroke because it was on both sides, including my left arm. I worried all week and rested in bed a lot then googled my symptoms when we got home and made a doctor appt with an orthopedic surgeon (it had to be my back, I was healthy.)

Five grueling months later I was diagnosed with MS. In hindsight I'd had many symptoms and minor flares over the years. I thank God I was diagnosed and now on medicine.

I can't imagine waiting years to find out. I'd have some doctors' heads on a platter, lol.

[nappy]

I had had recurrent "issues" with my back and legs for years that had always been treated with oral steroids, muscle relaxers and pain killers.

Finally was in PT for what was thought to be a disc problem and couldn't do the machines or treadmill correctly. I ended up herniating my disc and needing emergency surgery because it progressed to where I couldn't walk or feel anything.

While in PT (somewhere else) after the surgery it was discovered that I was weak and uncoordinated on the side opposite from the disc injury.

A good friend worked in conjunction with the facility and brought the possibility of MS up with my PT. My friend knew of our family history of MS. I was too deep into denial to even consider it.

A few MRI's later, I was shopping for a second opinion. My first neuro said to feel lucky it wasn't a brain tumor and to call him when things got bad.

That was 6 years ago, but in hind sight there were plenty of other sx that I could have paid attention to and chose not to. Now here I am, number 4 in my family and hopefully the last!

[Tawanda]

I used to have itching spurts for ten years with no explanation. I had my right arm go temporarily numb, also ten years before I sought diagnosis.

My diagnosis was delayed because once the feeling came back in my arm, I stopped looking for "pinched nerves" and "carpal tunnel sydrome" and such. I blamed it on stress...my brother had died after a failed bone transplant from moi at the young age of 36.

As anyone might do in their early 30s, I returned to college at night to get the real degree I should have gotten in the first place (but was too young at 18 to know it) while going to work for the State during the day for decent pay, job seurity and bennefits (note: my whole pregnancy cost 5 bucks copay back then!). I had a fiance, a great dog, a condo surrounded by beautiful mountains. The world was my oyster during my 30s-I had a gorgeous child at 37 and then I turned 40..BOOM! The rug got pulled from underneathe me. The life that I had built for myself from the ground up totally fell apart due to this thing called M.S.

All summer I had weird feelings like spider webs were on me, or that hairs were wrapped around my fingers when I was hand-washing dishes, or in the shower, but I'd look and there was nothing there.

I went to Nova Scotia on a family vacation and I did nothing but sleep while my DH & DD had fun without me. That was odd to be so fatigued. The last straw was after that trip. I had "Multiple Target" Lyme Disease, which was weird, and then the symptoms continued after a round of super potent antibiotics distributed through a port (yuck). My feet were buzzing so loudly and I was so tired, that I called my doctor. He knew my family history - my mother had M.S. - and thankfully got my MRI done quickly. No Limboland for me. The stupid thing lit up like a Christmas tree! We did the 'ol LP to rule anything else out, but it was like being a little bit pregnant. I had M.S., and this was a Hail Mary Pass. If I had to do it again, I'd simply have skipped over the spinal tap (had the dreaded spinal tap headach). I realize my doctor did not want to leave any stone unturned before being diagnosed with M.S. As a matter of fact, no one ever really said the words "Multiple Sclerosis" after all the testing...they just started writing it down as my diagnosis on my bloodwork and such.

God bless anyone who read this...this is a long and rambling post, but that was my journey-as truncated as I can possibly recollect it.