What I Went Through to Get a Diagnosis

[Quixotic1]

Hi, I'm Quix.  This is my story of finally getting a diagnosis of MS.  If you have been worked up for MS and have a diagnosis - Whatever that dianosis is - Would you post below and add your story?  Thank you.

I  am a 55 year old, white female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But, eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever sufferd. Remember I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!

Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.

The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild.  Later I discovered in his notes that he thought I was faking the weakness.

During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks.  One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I was terrified, and a neighbor had to help me home.  Some months later I had a couple weeks of a weird sensation of warm water running down my right thigh. It would happen off and on all during the day.  Each time I was sure I was being incontinent, but nothing was there!

I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...

Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months.  Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house.  My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.

It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.

I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine. He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications. Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.

The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!

Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough.  They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.

In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.

So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. The scary loss of function, the not knowing why, and the anger at being dismissed and discarded by my doctor. Ya know, the vertigo had been quite enough....

I'm now two months into therapy with Avonex.  I'm through a new relapse (my fourth in the 30 months).  A repeat MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet showed half a dozen old spinal lesions which were missed by the previous older machines.  I'm having constant electric shocks down my left leg when I flex my neck.  Dozens of times a day.  It's called L'Hermitte's Sign, and it is common in MS, but new to me.  It is felt to indicate upper spine lesions that press on normal nerves when the neck is flexed.

So I, too, am a Stanger in a Strange Land.  I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.

Quix

[kwarendorf]

Hi 12

Welcome to the group. This is a pretty old thread, but Quix is a great source of timeless information. SHe doesn't visit much anymore and I didn't want you to think she was ignoring you :-)

Do you have any MRI in LP reulsts in your mix?

Kyle

[12thman65]

Quix,
  Thank you so much for sharing your elaborate story. It was very interesting and helpful. I am at my 26th month of NO DIAGNOSIS! IM confident you identify with my long term frustration.  I usually start each day positively, although some days are daunting just to get up and not feel trapped!
It started out 2 months after a right shoulder partial replacement (Arm not socket) when suddenly one evening left foot drop and paralysis in sensation just developed BOOM! The embarrassing limp in public, symptoms which reflected sciatica at first....but doesn't fit all the criteria. As it quickly developed into varying degrees of paralysis throughout left lower back, hips, and down to my toes. Left foot drop, and the pain greatly concerned me.  Ive had 5 EMG's, multiple lab work, NO diabetes, NO cholesterol probs, NO results pointing to a DIAGNOSIS!!  SO now, 26 months later Ive been seeing a new neurologist at the University of Washington Medicine department for fresh eyes, perspective, and ideas on what to do and where to go from here??  Once again, thank you Quix.

[immisceo]

Are you by any chance an ex-pat or affiliated with the British military? I ask because it may be that you have more expertise to avail of if you arrange an appointment back in the UK through the NHS. (Just taking a punt based on your perfect English and the fact that all the people I know who've lived in Cyprus were British). Just throwing that out there.

I also know little about Cypriot health care Which partition are you in? Does that effect what's available to you?

[supermum_ms]

Hi and welcome,

You've actually posted on the end of a really old post (2007), many of the original posters are no longer active in the community.....

I know nothing about the health system in Cyprus but I would recommend you seriously consider getting a new GP........it's totally unreasonable for someone your age, to not be given symptoms relief and simply told your going to have to live with it! MS isn't the only condition that these symptoms are connected with, but i do think you probably need to see some one that specialises in vestibular dysfunctions for help...

cheers.........JJ

[Marie026]

Four years ago I woke up to a spinning sensation, fatigue, nausea
Then as time went on pins and needles in right shoulder blade followed by tingling. Pain pulling sensation in neck, stabbing pain in ears, tremor in hands, water infections, joint pain especially in knees and pain radiating up back.
Fatigue and vertigo are by far the worst symptom. The vertigo is there 95 % of the time and has completely taken over my life.

Ear problems have been ruled out by ENT.
2 brain scans without contrast by 2 different neurologists both normal. My gp is now saying it's something I am going to have to live with as a lot of tests have not showed anything up.
Where do I go from here? X

[eyetech68]

I am so glad to have come across your post.  
My father is 67 years old.  He and my mother are missionaries in Mexico, and have been there for the past 3 years.  They came and visited with us over this past summer.  What I saw in my father, I was not prepared for.  He would have "episodes" of shaking hands and knees, slight double vision, slurred speech, awkward gait, drop foot, numbness and tingling in his hands and feet, and total loss of balance.  Almost over night, he has become frail and has turned to using a cane.  My father said, this has been going on "for some time" and " it's probably Agent Orange"  He served 4 years in Vietnam 65-69, and has worked off and on during my teen-aged years, in nuclear plants.. My mother says " he's just dehydrated" ( God I love her ).  I did some research and came up with either Parkinson's or MS.  Dad seemed to think that after hearing the symptoms of MS, he had a diagnosis.They left to head back to Colorado after making them promise me they would see a doctor before heading back to Mexico.  He went to the VA hospital, where they ruled out Agent Orange. They ran an MRI an CT Scans, both came back neg for MS and Parkinson's.  Blood work was run for everything under the sun, and the only thing they found, was that he had Wilson's disease. No spinal tap was done to my knowledge  Still, in no way does this explain his symptoms.  They gave him a 'script for the Wilson's, but left everything open ended.  He just recently came back tot he states, stopped the medication so the VA doc's and neurologist could see the full set of symptoms. ( meds they gave him for Wilson's didn't help, and messed up his thought process ).  They still have no answers, and the doctors told him, that it was basically all in his head.  He caught wind of a " new age" doctor.  This man packed his body with ice packs which seems to be helping somewhat.  But again, still no real answers.  
  I was wondering of you may have a little insight to this, or if you could pass this information on to someone who might have a clue in which way to point me.
If you have the time, would you please send any helpful info
Thank you so much for any light you can shed,
SJ