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Diagnosed with MS last week. Seeking advice

Hi folks,

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.

  1. 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.
  2. I went through nerve conduction test, which was normal.
  3. The blood tests did not show anything either.
  4. Now in the process of getting referred to an MS Disease specialist. I am based in Leeds, so LGI / Private.
  5. 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?
  6. I don’t feel my symptoms are worsening anymore but improving.
  7. 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)
  8. 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.

Feet recovered

Armpit recovered

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

you are due to see an ms specialist consultant and this will be a mega important appointment.

you should be offered a Disease Modifying Drug (DMD) but this is absolutely your choice.

it could be useful for you to read up on what is available.

*infusions - lemtrada(campath) and tysabri

*injections - beta interferons, avonex and copaxone.

*tablets - tecfidera, cladribine. gilenya and aubagio

you should also be allocated an ms nurse who will advise you on the DMDs.

infections really hit you for six when you have ms so be sure you haven’t got a Urinary Tract Infection (UTI)

the bowel and bladder clinics are fantastic so ask gp to refer you or you can self refer.

they use an ultra sound machine to check for retention and can advise on everything in the bathroom department.

stress hits us like a truck! so reduce it!

you are young and healthy so stay positive.

1 Like

Hi

Well, you’ve kept detailed notes alright. Just what I normally suggest people do. I’ve been keeping my health diary for over 6 years, maybe not quite so detailed, but extremely useful. So in my view, well worth keeping up.

As Carole said, you should be offered disease modifying drugs (DMDs). The object of a DMD is to reduce relapses and the severity of relapses. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This will give you an idea of all the different drugs. You are not likely to be given completely free choice of all the drugs, it will depend on how active the neurologist thinks your MS is as well as what prescribing centres have been set up locally, your neuros thoughts on the different drugs and your own preference.

You could also take a look at https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis This has a lot of links to other pages which will help you to become better informed about the diagnosis. You are definitely going about things the right way, learning as much as you can about MS. And this site is an excellent place to start. There are pages on here which detail symptoms, treatments, drugs, etc. The MS Trust is another excellent source of information. And of course we will help when you need it.

In terms of your specific question about relapses, as Carole said, infections can trigger symptoms/relapses. But a relapse can strike out of nowhere. It does seem that you don’t have any bladder retention (17ml is virtually nothing),but if you do start to have problems, a continence nurse can help immensely.

Keep up with the exercise, that will pay dividends in the future.

Sue

1 Like

Thank you for the advice - very helpful, indeed.

I am scribbling questions about my upcoming appointment with the MS Disease consultant.

In my quest to learn more and more about MS - I sometimes nod my head thinking, Nah, I cant have MS. which compels me to ask a core question - Can MS be misdiagnosed? Can two MRI scans rubber stamp a person with MS?

My blood work did not show anything. Perhaps, I should ask (the consultant) If I could be subjected to a lumbar puncture test?

My assumption is that MS Disease specialist would undertake a lot of other factors other than just MRI(s) before offering DMDs. The more I read about them, the more I get worried about the side effects they may exhibit.

I guess these are all valid questions :slight_smile:

Hi

Pretty unlikely that two MRIs could be used to diagnose MS and for it to be a misdiagnosis. Yes, you could potentially be given an LP, but you have to keep in mind that only 80-95% of people with MS have Oligoclonal bands in their cerebrospinal fluid. This means up to 20% of people have definite MS but are negative for O bands. So you could have an LP, have a negative result, but your diagnosis would not change. So it’s fairly unlikely the MS specialist wouldn’t want to do it.

I know the feeling of ‘but I can’t possibly have MS’! Still. After 21 years. It was never supposed to be part of my life. I should have been the person I was when I was 30 for the rest of my life. Instead of a person who’s had MS for more than 20 years.

The MS specialist will of course ensure that s/he agrees with the diagnosis. So I’d expect a neurological examination, and for the doctor to review your scans. S/he will probably consider whether any other tests should be done, this could include LP and Evoked Potentials. Pretty much nothing would show up in blood. But that doesn’t mean you won’t have further blood tests.

It’s a pretty good idea to have your vitamin levels checked, in particular, D and B12. Many neurologists believe people with MS should take extra vitamin D. But if you are to take high dose vitamin D, you should either have your level checked before you start, or sometime after you’ve started the supplement. Personally, I was taking 5000 iu (International Units) for quite sometime before having it checked. But after having the level checked, it’s at the right level.

Yes, there are side effects associated with most (all?) of the DMDs. But better to take the risk of side effects than disastrous relapses. The way to view them in my opinion is to weigh up the risks against the benefits. Ie, the highest possible relapse reduction against the least possible side effects. And as to how much to risk, that will partly depend on how active your MS is and what the neurologist suggests.

Sue