I am 38, Male - a Software Engineer, recently diagnosed with MS. Below is a timeline of where I stand, I have been building a log of events as they happened to date.
I am left handed, but my right-hand side is affected.
I am with high spirits despite the fact that I am diagnosed with MS and believe life will not be doom and gloom for my family and me. I am trying to educate my self and hope that this forum is the place to be.
I have been a healthy and active person all my life, why I got subjected to MS, perhaps will always remain a mystery! - time to move on.
I have some questions - appreciate your support in advance.
- Are MRI Scans ultimate answer to the diagnosis and to conclude a person has MS. I had two scans one without contrast (first one ) and one with contrast (the second one), after which the neurologist concluded I have MS last Friday. Also, advised, that I need to let DVLA know about this.
- I went through nerve conduction test, which was normal.
- The blood tests did not show anything either.
- Now in the process of getting referred to an MS Disease specialist. I am based in Leeds, so LGI / Private.
- If number one is a yes and does confirm MS (not doubting the neurologist ) in any shape or form - what should I expect or ask the MS Disease Specialist? Will I be exposed to DMTs straightaway?
- I don’t feel my symptoms are worsening anymore but improving.
- Only issues I am left with is reduced sensation on the index finger, baby finger and Lhermitte’s phenomenon - when I look at my feet touching my chin to chest. Also, sometimes I feel that in a particular spot in skull rear right has a spot with tingle /burning sensation (equivalent to the radius of a pen or maybe slightly bigger)
- Also, what can trigger existing and new symptoms. I do not want MS to rule my life.
Notes below - a bit crude and I also did not want to make the post long but gives you an insight into symptoms and their recoveries,…
Friday, 2 February 2018 Feet, strange insole feeling as if my innersole is uneven on both more on the right-hand side, mainly on toes. I thought my shoe had deformed innersole.
Saturday, 3 February 2018 Since 3rd Feb evening right hand started with pins and needles. Later, no pins and needles but lack of sensation on the right-hand side. Sand like feeling, as if I have salt/sand rubbing between fingers.
Also, I was anxious on the day BP on two reading averaged at 140/90, and one reading showed 151 / 89 for about 50 ish minutes - Swollen eyes and warm ears - I don’t have BP
Sunday, 4 February 2018 flight to the U.S. - RH Index finger and thumb numb and worst - pins and needles in RH arm and RH side of the forearm, RH armpit and RH front chest area below shoulder blade felt funny when rubbing soap during shower.,
Monday, 5 February 2018 Also slight pain in the lower back which I had for a couple of years - pain going to hip and RH thigh
Friday, 9 February 2018 Back from the US - same symptoms - numb, lack of sensation RHS index finger, thumb and baby finger - RHS and LHS toes numb and persistent feeling on lower midfoot as of I have extra callus / hard skin - armpit and front of chest under shoulder blade is funny
Monday, 12 February 2018 Saw GP for 1st time regarding this issue - BP was 140/90 - Referral letter to neurologist issued and blood tests done
Friday, 16 February 2018 1st consultation with Neurologist - MRI (without contrast) and nerve conduction test prescribed. Also, the Neurologist prescribed Amitriptyline which I later refused to take since I read the leaflet
Friday, 2 March 2018 1st MRI - No contrast
Sunday, 4 March 2018 When using right-hand keyboard finger feels like its made of wood. Stiff to bend however I can bend, feel like I am stretching too much. Exertion (lack of sleep) makes symptoms worse.
1st time felt - Surge of energy when I look down - when I look down a wave goes back as some water type wave, energy flows downwards - Lhermitte’s phenomenon
Monday, 5 March 2018 Trip to London - laptop bag on RHS shoulder - 2 plus hours - lower back pain - right leg numb behind thigh - lower limb rear - sudden Lhermitte’s phenomenon is more evident
RHS thumb has become normal
Tuesday, 6 March 2018 I feel - changing direction has got something to do with numbness (proved wrong later)
both toes are numb
burning sensation just above the tailbone
When using WC - hip section gets numb - fixed later
Wednesday, 7 March 2018 Nerve Conduction test.
Wednesday, 14 March 2018 Head dull ache going to RHS arm 14 march mid night - on going - went to A&E
Thursday, 15 March 2018 I self-discharged myself from A&E after not getting seen for 8 hours - shocking
Friday, 16 March 2018 worst today excluding RHS thumb, rest is all numb - gritty feeling
The left side of RHS is normal. The right side of the same forearm including armpit and right chest above shoulder blade is usually numb but radiating.
The lower back continues to give burning sensations dull pain.
RHS mid foot uneven sole feeling is same - toes are worst from a numbness standpoint.
Friday, 16 March 2018 2nd consultation with Neurologist
Neurologist advised another MRI. Inflammation is seen in MRI - two in the brain, two in the spine. Steroids offered for five days - methylprednisolone 500 mg - 5X100mg tabs. Nerve condition test was ok. He said he might need to refer me to MS disease specialist.
Neurologist advised to see him in 4 weeks time after contrast MRI.
Saturday, 17 March 2018 started course of steroids for 5x days
Tuesday, 20 March 2018 Armpit, front RHS of the chest (just under shoulder blade) is now normal - recovered
Friday, 23 March 2018 Saw GP - as I felt the headache getting worse (RHS)
GP issued two weeks of sick note - I was reluctant
GP organised a meetup with a new neurologist at Leeds LGI - hot clinic on Monday
Sunday, 25 March 2018 2:45 AM out hours GP - consultation due to the bladder (possibly) ruled out via the test that I don’t have a UTI and GP thought that anxiety lets me believe that I am retaining fluid - GP ruled out that there is no retention
RHS - head dull pain now more prominent and moves through the head via the neck to the index finger and disappears - circa 3-5 seconds. I feel my right eye gets closed - though it does not
Monday, 26 March 2018 keyboard typing is annoying, lack of sensory feel - Feet a lot better - in fact, recovered, no numbness in toes - uneven insole feel in RHS mid feet is gone - 90 percent dull ache still there… load related lift heavy object etc. Barbour chair syndrome is still there
Monday, 26 March 2018 Met my Neurologist instead. Checked bladder function, 17ML retained, so normal - pregabalin 25 mg 1+1 issued.
27/03/2018 to 3/4/3018 Feet recovered
armpit feel as well RHS chest has been fine.
Lhermitte’s phenomenon has been in control
Tuesday, 4 April 2018 common cold developed- sensations - no changes
Thursday, 6 April 2018 cold lead to bad shivers and high fever - controlled via ibuprofen paracetamol round the clock
Friday, 7 April 2018 hand symptoms deteriorating
Sunday, 9 April 2018 1:00 AM fever subsided on its own - no more paracetamol / ibuprofen
Monday, 10 April 2018 slight feel under the feet (ball area) or original unevenness. Possibly fever and cold symptoms have worsened things.
Wednesday, 12 April 2018 feet restored/recovered
Thursday, 13 April 2018 3rd Consultation with Neurologist - confirmed MS, findings from 2nd MRI with contrast - referred to MS disease specialist - don’t know what happens next from here?
Friday, 14 April 2018 Full update - memo for me on where I am!
No dull headaches since three weeks
The bladder is 100% fine
Taking pregabalin regularly ( where it is helping I have no idea)
Lhermitte’s phenomenon is there but radiates, 1st look at floor > chin to the chest is bad then it does not exist for few minutes > return again if I don’t move my head, i.e. looking down at my feet.
RHS chest recovered
Problem only in the tip of RHS index finger but there is an improvement
when I am working in the cold - it feels that my fingers are 95% normal
sometimes I think that in a particular spot in skull rear right as a spot with tingle /burning sensation (equivalent to the radius of a pen or maybe slightly bigger)
I have no balancing issue
Doing a 5 KM-ish walk /run every day for last three weeks.
back to work and normal