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Feb 2009 - Mar 2012 - Timeline

Dec 28, 2009 - 2 comments

March 29, 2010-Diagnosis- MS

Apprx 2004 to 2009 - very tired every day in the afternoons, especialy when driving, tried shaking my head and stopping and walking for a minute, and bladder issues (always looking for a place to urinate). Often thought about seeing the dr, but ignored symptoms as 'just getting old'

2005 Had pollops surgicaly removed from sinusses after years of runny nose (thought it was alergies)

Feb  2009 numb forearms, hands, uncoordinated/clumsy, limp (left leg), cognative problems

Feb , 2009 went to emergency-blood tests, urine test, ecg, CT scan. Found white matter disease.

Feb '09 MRI  brain - second MRI w enhancement (both MRI's paid for by me to avoid waiting time)

March '09 Neurologist and Neurosurgeon agreed large lesion in middle of brain is likely a tumor, will need to biopsy

March '09 inner ear infection, amoxicillin for 10 days, prednisone for 5 days

March '09 biopsy done. Pathologist thinks it's not a tumor, maybe something like MS, sending sample to Vancouver for further testing  

March '09 got a rash all over at the hospital (suspected from reaction to Morphene, swithed to T6, but rash got worse at home) Dr prescribed Prednozone 30mg for 3 days and Benadryl

March '09 frequent headaches
April '09 report from Vancouver says not a tumor, it's a demyelinating, MS type of disease

April '09 RPR test- negative

April '09 blood tests sent to Centre of Disease Control, UBC (  no results ever reported to me or my Doc)

May '09  Neuro apppointment. Says it might be MS. He wants to wait and see. I want to get a new Neurologist.

May '09 realized tinnitus in right ear is constant and quite loud

May '09 VEP- Neg

August '09 MRI, head, c-spine  at least 9 head lesions, no neck lesions

Sept '09 Neuro app. Confirmed Neuro not right for me, says he can't do anything but wait another 6 months and see what the next MRI shows. Deffinitly going to get a new Neuro.

Nov '09 right shoulder socket pain. Took Ibeprofen and heat for relief. Mid March 2010 found it is strained rotator cuff. Went to physiotherapy for treatment. Seems almost completely healed up, June '10.

Nov '09 saw a new Neuro at UBC MS clinic. Also saw genetic counselor and MS nurse. They took 9 vials of blood for various tests and ordered a bunch of new tests. Yahoo they're gonna try to figure out what's wrong!

Dec '09 spinal tap, Salmon Arm Hospital - Possitive for O bands

Dec  '09 evoked tests,VGH (optic, auditory, and spinal)  All results 'normal'

Dec '09 opthomology exam, UBC MS clinic- no sign of any MS damage

Dec '09 Chest ct - evidence of previous tuberculosis. I've never had TB. No specific CT findings to suggest sarcoidosis

Dec '09 Gallium scan- low grade activity within the hilar region bilaterally which could be due to mild reactive change within lymph nodes but the appearances do not suggest active sarcoidosis.

Jan '10 Started taking Detrol LA for bladder issues. March '10- seems to be working, only getting up once or twice a night now.

Feb '10 Pain in lower ribs, sometimes both sides, comes & goes. Ice pick feeling in left shoulder blade, usually lasts 1 hour to half a day. Tinnitus in right ear is very loud.

Feb '10 MRI w contrast, brain. no significant changes

March '10 Left tooth ache, moves top to bottom to top again. Left side of face gets sore. Very painful!

March 29 '10 - dx MS  prescribed Rebif DMD and Gabapentin. Neuro is also sending me to a respirologist to make sure we're not missing something in my lungs. Appt May 2010

March 29 '10 - provided blood samples (3 vials) for MS genetic study. Brought blood sample kits for 2 sisters and contacted other sister and parents for their consent to provide blood samples for genetic study.

May '10 - Lung specialist (respirologist) orderred TB scratch test and wants another chest CT in 6 months

May '10 - TB scratch test negative

May '10 - on several occasions had severe pain in the center of my chest, sharp pain, radiated to the left, then dissapeared completely, the first time lasted 5 to 10 minutes, second time 1/2 hour. GP sent me for ECG and is sending me to a specialist to check out heart.

May '10 - foot cramps in both feet (severe and for a couple hours) Also increase in occasions of other muscle cramps in thighs and calfs

May '10 - noticed a return in frequency of headaches (hadn't had as many headaches for several months) especially in my left temple, but also at the back top of my head.

June '10 - left earache. GP said no infection, probably neurological

June '10 - interferon screen blood test

June '10 - ecg (ordered by GP) normal

June '10 - prostate exam, normal

June '10 - dental check up, no tooth problems, confirmed facial pain is neurological

July '10 - Heart specialist examined me and did another ECG. Feels chest pains are not heart related, but will schedule stress test at hospital to confirm.

Sept '10 - chest CT @ VGH

Oct '10 - stress test - Dr said I have nothing wrong with my heart, as we suspected

Oct '10 - check up and lung function test w respirologist following chest CT. No changes in chest. Will repeat CT and follow up appt in one year.

Dec '10 - Neuro appt. Noted more left hand/arm ataxia. Continue with rebif and gabapentin.

Feb '11 - Saw GP re cog issues. Blood tests found B12 to be slightly low, Dr said to take over the counter B12 vits.

Mar '11 - Gp did a memory test (very basic) I scored 30 out of 30. i don't see how knowing what day of the week it is ( after all, I knew to show up for my appt) relates to the type of cog issues I've been experiencing...oh well.

April '11 - MRI w Gad @ UBC, head. No changes from Feb '10 mri.

May '11 - Blood Pressure is high. GP ordered fasting blood and urine test. Will see him in a month.

May '11 - have noticed a lot more numbness in my right fingers, and r forearm in the last 6 months. Also numbness in my right upper lip comes and goes almost daily.

June '11 - GP prescribed Novo-ramipril for slightly high blood pressure. Also told me to watch my diet because cholestoral is rising.

Sept '11 - Chest CT @ VGH.

Nov '11 - Respirologist appt. No change in lungs. Will arrange chest CT for next year. When the hosp calls to book CT I am to request having it the same week as my Neuro appt. If no changes he will tell me over the phone to save a trip.

Oct '11 - worst bout of MS hug yet, steady lower rib pain, tightening feeling right accross both sides to my back. Constant pain lasted over 4 days and nights. Woke me up many times and often could not fall back asleep. Phoned MS nurse who said it's called 'banding' and is very common in MS. It should go away but if it persists for awhile there is med. avail., but it takes 7 days to be effective. After a few days pain lessened to discomfort on 1 or both sides lasting from minutes to hours, not bad enough to awaken me but still hard to fall asleep.

Dec '11 - Neuro appt. Feels I likely had a relapse in Oct. Wants me to continue taking Rebif.

Feb '12 - Gastroscopy to try and determine reason for acid reflux. Taking pantaprazole 2X daily. Took 2 biopsies, one esophageal__, and one stomach. Results in two weeks.
             - Colonoscopy done at the same time - normal findings

Mar '12 - Gastroscopy results - stomach biopsy was just a benign polyp. Found stomach acids too high up in asophogus. Continue taking Pantoprazole 2 x daily, repeat gastroscopy in one year.

Have had various symptoms all along, with some good periods where I almost feel normal again. The Gabapentin seems to be very helpful with lessening my pain and tingling.  I haven't worked since this all began due to cognitive issues, fatigue, uncoordination,and Doctor's orders.

-ongoing symptoms- very tired-fatigue
                            - wobbly, balance problems
                            - uncoordination and weakness (mostly left hand)
                            - brain fog, memory, problem solving problems
                            - numbness, mostly left hand, sometimes left forarm, neck and bottom of face and in left foot
                            - tooth/jaw ache, left side. Also left earache as of June 2010
                            - headaches, usually back base of skull, but also stabbing headaches in temples at times
                            - tinnitus, constant in right ear since approx May 2009, and occasional in left ear
                            - assorted tingling, burning feelings in feet, fingers, arms, and lower face
                            - muscle twitching all over now and then. Muscle cramps, mostly left foot but also left thigh and calf
                            - sore neck (may be muscular from stress??)
                            - stabing pain in lower left shoulder blade area. Since March 2010 stabbing pain appears in  different spots in left shoulder blade area, but mostly in original spot.
                            - pain, mostly in left hand but sometimes in left knee and foot.
                            - lower rib pain, sometimes both sides, but often just one side - Oct '11 reported constant 'banding' to MS nurse (4 days constant, then tapered back to off and on)

Drug regime- Pantaloc for heartburn (acid reflux) for about 8 years now  - 2X daily since Oct 20, 2011
                 - Tramacet, as required for headaches (since about April '09)
                 - Detrol LA (started Jan 19, 2010)
                 - Gabapentin (started April '10. as of now at 1200mg per day)
                 - Rebif (started Aug 3, 2010)
                 - also taking 2000 units vit D and 1000 B-12 daily
                 - tylenol extra strength as required for Rebif side effects
                 - Novo-ramipril 5mg (started June 4, 2011)

My next  Neuro appt will be in Nov, 2012

Next chest CT & respirologist appt will be in Oct/Nov, 2012

Post a Comment
1137779 tn?1281542505
by silkcut, Mar 31, 2010
Mike - this is a fantastic record and really helpful for others going through the process, Thanks for posting this list.

It's interesting to see how many MS indicator tests came back normal, which is the point at which most neuros tell you to go home and forget about it.

I;m so sorry to learn that you've now had the MS dx'd. But thank god you haven't been left lingering for years. How do you feel now? I imagine that there's a wide range of all sorts of emotions. But if you're looking for a new career, I reckon you might consider limboland advocacy!! I think your approach could help so many!


3986919 tn?1352125983
by grandmalaurie59, Nov 09, 2012
Hi mike,

Just read you record....very helpful and encouraging for me!!!!! I too am sorry for your MS dx. I saw you mentioned heart  burn.....hmmm, I NEVER had heartburn in my life until all these latest MS symptoms started....when my symptoms are worse so is my heartburn! Also I have had tooth aches on my left side....sometimes very severe...sometimes lasts for days...nothing wrong with my teeth either.

I was dx with probable MS from an MS Specialist due to the fact that lesions are ONLY in my brainstem. I also experienced what I thought was the MS hug...but a MRI of my thoracic spine was clear, so doc said it was not MS hug but probably coming from my other spine issues...

Hope you are doing better now,

Laurie :)

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