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Timeline - diagnosis SPMS 12/05

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I was asked to do a timeline and I have updated it here with as much as I can remember.

My symptoms are more motory than sensory.  I am English living in the USA since 1980. I have led a very active life, worked out, walked, never overweight , low blood pressure, no medical problems, etc.  and as far back as I can remember I have been relatively healthy. Until………

Fast forward to 1998  at 58 years of age when I started to notice little things at first and not all at one time but spread out over the next 5 years.  Back pain, neck pain, vertigo (BPPV), legs aching more than usual.  If I looked up to the ceiling  and back quickly I got  a sensation of falling for maybe 20 seconds when the room spun around. I had excruciating stabs of pain up the side of my ear/face which could be a single one or occur every 5 minutes or so for a couple of days. I attributed this at the time to TMJ. The vertigo was mild and it improved and was nothing I couldn't handle by avoiding those movements.

I had a couple of small mishaps which I did not put down to anything serious. I was climbing up a ladder and my leg just did not connect with the second step  - it seemed like I was stepping on air and I fell backwards but I got right up and carried on. Then I got out of bed one morning and my leg collapsed underneath me leaving me wondering what the heck was going on.  Doctor(s)  put it down to my lower back pain and a pinched nerve. I also had a very bad aching right hip. They reviewed X-Rays  and MRI’s of my spine which showed  narrowing at L4-L5. I had an MRI of my brain (2001) which showed one white spot (not explained to me at the time but later thought to be a TIA). My neck pain resolved itself.  EMG studies did not show up too much of anything helpful.   I continued having hip/back pain until 2004. Had some flashes and things going on in my eyes. They have since gone and I did go and see an Opthamologist who said there was nothing wrong.

In 1/2004 my left arm started to hurt when raising it above my head so I stopped trying to raise it. My Neurologist  thought it might have been a touch of Bursitis.  X-rays showed several lucencies in my bone  and it was concluded that it was consistent with disuse of the arm or multiple myeloma (bone cancer). Cancer was ruled out after tests.    Eventually that pain went away and I was left with a  somewhat weaker arm.   I did some physical therapy to help strengthen the arm but it did not help too much.

In between all this I had a few emergencies and procedures, but  they are not, I emphasize NOT,  relevant to MS. However, they did not help matters as far as my stress factor and health were concerned and while these things were going on I had little time to worry about the smaller things going on in my body.

2/2003 I had a DVT  in my left leg and taken off HRT abruptly.

5/2004 total right hip replacement surgery (back and hip  pain disappeared) but my left side arm and leg became weaker after surgery.

2/2005 dieulafoy lesion which required a blood transfusion. It is  a bleeding artery in the stomach and happens spontaneously, without warning.  There is no known cause.

12/2006  fall in the shower requiring 26 stitches to buttocks - most likely due to dizziness

4/2007Just recently had another fall requiring foot surgery  - my footdrop caused me to trip over the carpet.

Anyway, going back to July 2005 I decided that because my left arm was becoming progressively weaker and my left leg was getting “heavy” with pronounced footdrop I should go back to my primary care doctor to find out what was going on.  This primary care doctor has a sister-in-law with MS but never even dreamed, thought or mentioned the possibility to my husband and I.  He thought I had another TIA.  He referred me to a new Neurologist as mine had left the State.  I was on Plavix which is an anti-platelet medication in view of the previous DVT so a bit of head scratching went on as to why it was not working to prevent TIA’s if this was indeed what was happening.

In August  2005 the new Neurologist saw me and after reviewing my medical history  almost immediately diagnosed MS. He asked a lot of questions and did some physical tests for arm and leg weakness. I had an excessively strong left  knee jerk reaction which is not indicative of me having had a stroke. He managed to pull out a long time forgotten memory of mine when  I was 21 after the birth of my daughter. I could not physically get out of bed. My doctor was called in and he said he thought I had “polio”. (Back then in U.K. the doctors came to the house)  This was scary but after a month or so I recovered fully and went back to normal life.  (Interesting to note that you can pull up articles on the web today which say “MS is the ‘Polio’ of the 90’s”).  Anyway, this episode was used by my present day Neurologist  as probably being the first symptoms of my MS.  I forgot all about it in the years that followed never thinking for one moment that it might be significant.

My new Neurologist wanted a second opinion from an expert but before that he wanted to do some tests as follows:

Full bloodwork to rule out everything  possible,  i.e. Lupus, Lyme, RA, AIDs, syphillis, etc. etc.  He said all blood tested normal.
VER -Virtual Evoked Response (eyes) -   Normal
SPINAL TAP ( My spinal fluid samples were  sent to two different  laboratories. One result came  back NEGATIVE for oligoclonal bands  one came back POSITIVE for 2 oligoclonal bands.  
MRI  - brain -   Two current white spots on the brain
EMG's inconclusive but not 100% normal
Solumedrol for 5 days - not effective for me

Second Opinion
December 2005 - I was now using a walking stick and was sent to the other Neurologist who specializes in MS and runs an MS Clinic. I was armed with all the test results, MRI’s, reports, etc. He put all these results together and, based on his experience, he diagnosed me with Secondary Progressive MS.   The Neurologists always prefer to have at least one prior incident to dx MS so the one in 1961 was deemed to be the “first”. It was also noted that a 2003 MRI showed variability and some resolution of previous lesions seen on MRI's  in 2001 & 2002 which means my body was probably trying to repair  the demyelinating process going on but could not catch up with it all.   My MRI's (all were performed with and w/o contrast) in 2004, 2005 revealed atypical T2 signal changes more consistent with MS demyelinating and axonal processes than ischemia (TIA's or mini strokes).

Since my diagnosis I have had  progressive weakness in my left arm and leg and have to be careful of tripping.  My Orthopedic doctor is making me an AFO brace after this last fall to help with the footdrop. Sometimes I can type and other times I use just my right hand.The weakness varies in my left hand from weak to useless. I get severe night sweats and wake up soaked to the skin. My left leg (particularly) swells up in the evenings if it is not propped up and gets very red. It sometimes feels numb and I have to poke it to see if anyone is home.  My feet and hands burn sometimes. By the end of the day my footdrop becomes a lot more evident and I can hardly lift my foot.  Most days I get tiredness to the extent that my body literally droops over like a wilting flower if I have overdone it,  but it doesn’t last.When I rest I am fine again. Doctor recommended Rebif which I declined. I took LDN for one year with no great results.I am not taking any medication at all, except Plavix.

Hoping to get PT next week to get me walking again after surgery even if it is walking badly.

I took ages to do this so I hope it helps someone.

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