Hello!

[bm7100]

Hi everyone,

I am 31 year guy from Sweden living in Switzerland. I recently broke my yearslong 'never ever read anything about your symptoms on the internet' rule and eventually found myself on this message board.

My MS-like symptoms (weak right leg/foot and headaches) started about 7 years ago when I was a senior at college. I eventually found out that I have demyelinating plaques in the brain (few small ones in the brain and none in the neck) and relatively high inflammation in the nervous system according to lumbar puncture results.

My MD has told me 5 years ago that the morphology of the plaques and the fact that I have not had a relapse, is reminiscent of primary progressive MS. However, it is impossible to have that diagnosis without a clear progression.

Since then, I have been doing OK (except for occational symptoms). For the past 3 years, I was stupid and ambitious enough to work in the most competitive and cruel research lab in the country. It was strange that I was not having any MS symptoms when I was working 200% a day. Knowing that I would soon collapse, I wrapped up my project and quit my job in December 16. A month ago I moved to a peaceful town on the Swiss Alps, where I accepted a decent position with almost no stress.

But as soon as I quit my job - bam - the last 4 months have been a *****. I have had problems with my vision, excruciating headaches, weakness in my limbs and perhaps the most scary of them all numbness in left/back of the skull and numbness in my mouth affecting my speech. What's brand new is that I get tremors on my toes and fingers at a relaxed state.

I had CT-scans once a year since 2011 showing no new activity. The last one was in Nov 16 before all hell broke loose. I believe what I'm having now is either anxiety disorder, or MS has marched on, or a combination of both.

I will of course see a doctor here in Switzerland about these symptoms. Right now I am waiting for my paper work to be sorted out.

My questions are:
Can primary progressive MS "progress" without an activity detected on CT-scan?
Does anyone else have resting tremors in toes/fingers. Predictably, googling this wasn't a good idea.

Sorry about the long message and the silly username, I just typed in random numbers.

All the best to all of you!
Bill.

[SNOOPY]

Hello bm7100 and welcome to MSworld

Have you ever had a MRI or have you always had a CT Scan? Have you been officially diagnosed by A Neurologist with Multiple Sclerosis? The diagnostic criteria for MS relies heavily on MRI evidence not CT.

There is a diagnostic criteria for Multiple Sclerosis, The Revised McDonald Criteria:
https://www.va.gov/MS/articles/2010_...ia_Revised.pdf

This criteria is internationally recognized.

Part of the criteria requires all other possible causes for a person's symptoms be ruled out.

The "type" of MS depends on the way it behaves and can take time for a Neurologist to determine what type of MS a person may have.

Best wishes!

[bm7100]

Hi thanks for your quick reply.

i should have made it more clear.

1) I always have MRIs, i dont know why I wrote CT-scan. Sorry, my mind is all over the place.

2) I have never been officially diagnosed. I know I have lesions typical of MS and elevated IgG levels in the spinal fluid. I don't know exactly why they wouldnt finalize the diagnosis. Thanks to the amazingly bad health care in Sweden, I could get 4 appointments in 7 years with 4 different doctors at the same MS-clinic (they keep on changing the doctors), one of them mentioned the morphology looks similar to progressive MS, all the others refused to even speculate.

Thanks again for the info.

[hunterd]

I was diagnosed in the year 2001, I should mention that I am primary progressive MS, since then, I have not had any changes in my MRI scans even though I have progressed greatly. I am not medically trained and I do not understand this, but I have figured out that when it comes to MS there are many many things that do not make any sense.

[Carolinemf]

Hi,
I have had ms for 30+ years and always showed very little lesion progression. Considered 'stable'.
Though still experiencing symptoms and physical progression. Am now considered SPMS.

Doc said eight months ago that my main problem isn't lesions but over all brain atrophy or grey matter (rather than white) damage.
This is increasingly being considered to contribute to cognition problems and general disability more significantly than lesion load by many studies. Unfortunately there aren't any truly accurate tests to measure this at this time.
Comparisons of 7 years of mris may help. Also a pRFNL eye test to measure the nerve lining at the back of the eye can measure the thickness of this nerve in Microns and if taken Semi regularly can also be used as a gauge to track atrophy as is a lot less expensive and bothersome than an mri.

Tremors or vibrating sensations do occur. Some times they are always there but we don't notice them if we are doing something but when we stop they drive us crazy. Sometimes activity contributes to stirring up spasticity and this causes peculiar sensations when we rest.
All the best to you too and don't be afraid to google us occasionally- I have learned more on this board in the last two years than off of multiple specialists over 32 years.
Caroline

[bm7100]

Thanks for your replies. The forum is great. At first, I was terrified to read this forum but it has comforted me in a strange way.

Caroline, your advice is great and I believe that my situation could be somewhat similar. My walking distance hasn't shortened since the first MRI (it may have shortened without me noticing). I will bring up these points to my doctor here in Switzerland.

What worries me the most is not me being disabled (I am not a saint, I worry about that too but it is not at the top of the list of my worries). It is just that I was planning on proposing to my girlfriend within a month, and starting a family. My nightmare is that I wouldn't be able to take care of my children, play with them etc, and be a burden to my wife. I know I'm dramatizing it right now, but ever since my symptoms began, I have nightmares about this.

Did your MS start in your 20s like mine? How did you manage work/family?

Thanks again. All the best

Hi,
I have had ms for 30+ years and always showed very little lesion progression. Considered 'stable'.
Though still experiencing symptoms and physical progression. Am now considered SPMS.

Doc said eight months ago that my main problem isn't lesions but over all brain atrophy or grey matter (rather than white) damage.
This is increasingly being considered to contribute to cognition problems and general disability more significantly than lesion load by many studies. Unfortunately there aren't any truly accurate tests to measure this at this time.
Comparisons of 7 years of mris may help. Also a pRFNL eye test to measure the nerve lining at the back of the eye can measure the thickness of this nerve in Microns and if taken Semi regularly can also be used as a gauge to track atrophy as is a lot less expensive and bothersome than an mri.

Tremors or vibrating sensations do occur. Some times they are always there but we don't notice them if we are doing something but when we stop they drive us crazy. Sometimes activity contributes to stirring up spasticity and this causes peculiar sensations when we rest.
All the best to you too and don't be afraid to google us occasionally- I have learned more on this board in the last two years than off of multiple specialists over 32 years.
Caroline

[Carolinemf]

Hi Again bm7100,
Looking back my ms probably started in my teens with first major onset at 20.
I went on to have 5 children in 6 and 1/2 years and and start up and run my own business.
The children mightn't have happen if docs had diagnosed me before i was 30 but with work i felt i needed to contribute to my kids upbringing as much as possible while it was still possible.
We all panic and/or worry about the future in our own way. But i will say that for me - although it was darn hard raising 5 small children and working full time and caring for older parents etc etc it kept me going -I needed to get up and get going each morning for others (and myself) because this thing was just not going to beat me. I can be pretty hard to live with at times and my husband has said that I'm just too stubborn to give in.
200% just like you.
I had an aunt and an uncle who passed away in thier early forties from a very progressive ms and this was always in the background scaring the hell out of me.
But i truly believe that without this motivation i would be much more disabled than i am.
I have been lucky in that my physical appearance wouldn't wouldn't let anyone know i had ms.
There have been times when i have been very disabled for months at a time but because I was the boss this allowed me to organise around my current abilities and if someone commented on anything at the time i could dismiss it as something else. Pushing through pain and forcing my self to do physical 'work' I believe helped me maintain muscle tone.

You may find that you have basically hit a proverbial wall or are a bit burned out for a while and that is why you have increased symptoms for a while. I hope so and that they will settle down like mine did once I got myself sorted in other ways.

There are many on msw who have lead full lives with work and family included - it may not be an identical life to one that doesn't have a member with ms included in the mix but it can be just as satisfying. Think of today , do the best you can with it, and appreciate it and attend to tomorrow when it arrives.

It also has been an enormous help to me to have a wonderful husband (married almost 32 years).
Does your girlfriend know about your diagnosis? How long have you been together?

Look forward to hearing from you. All the best.

[bm7100]

Hi again,

Thanks for your suggestions.

Sorry for the late reply, I have been very down for the past days.

I have been with my girlfriend for 4 years, she knows everything. She promises that she will always be with me, regardless of my condition. Your story is inspiring really, it surely seems that we can -still- partially control our destiny.

As I said earlier, until now, I used to tell myself that ignorance is bliss - i didnt read about MS at all, it was easy to sort of ignore my MRI results as I was feeling OK. But now with the symptoms kicking in, I have started reading more about the disease.

I have one more question since I have not yet been officially diagnosed (i hope i am not annoying you with all these Qs).

NMSS website states:
"People with RRMS tend to have more brain lesions (also called plaques or scars), containing more inflammatory cells, while people with PPMS tend to have more spinal cord lesions, containing fewer inflammatory cells."

My MRI results (several brain lesions and no spinal lesions) and LP results (high IgG and no OCB) are more fitting to RRMS. Is it even possible have PPMS with no spinal lesions? I guess at the end of the day what determines your diagnosis is how you progress right? and whether or not you're able to fully recover from the flare-ups.

Thanks again, and cheers to your awesome husband!

Bill.

Hi Again bm7100,
Looking back my ms probably started in my teens with first major onset at 20.
I went on to have 5 children in 6 and 1/2 years and and start up and run my own business.
The children mightn't have happen if docs had diagnosed me before i was 30 but with work i felt i needed to contribute to my kids upbringing as much as possible while it was still possible.
We all panic and/or worry about the future in our own way. But i will say that for me - although it was darn hard raising 5 small children and working full time and caring for older parents etc etc it kept me going -I needed to get up and get going each morning for others (and myself) because this thing was just not going to beat me. I can be pretty hard to live with at times and my husband has said that I'm just too stubborn to give in.
200% just like you.
I had an aunt and an uncle who passed away in thier early forties from a very progressive ms and this was always in the background scaring the hell out of me.
But i truly believe that without this motivation i would be much more disabled than i am.
I have been lucky in that my physical appearance wouldn't wouldn't let anyone know i had ms.
There have been times when i have been very disabled for months at a time but because I was the boss this allowed me to organise around my current abilities and if someone commented on anything at the time i could dismiss it as something else. Pushing through pain and forcing my self to do physical 'work' I believe helped me maintain muscle tone.

You may find that you have basically hit a proverbial wall or are a bit burned out for a while and that is why you have increased symptoms for a while. I hope so and that they will settle down like mine did once I got myself sorted in other ways.

There are many on msw who have lead full lives with work and family included - it may not be an identical life to one that doesn't have a member with ms included in the mix but it can be just as satisfying. Think of today , do the best you can with it, and appreciate it and attend to tomorrow when it arrives.

It also has been an enormous help to me to have a wonderful husband (married almost 32 years).
Does your girlfriend know about your diagnosis? How long have you been together?

Look forward to hearing from you. All the best.

[SNOOPY]

My MRI results (several brain lesions and no spinal lesions) and LP results (high IgG and no OCB) are more fitting to RRMS. Is it even possible have PPMS with no spinal lesions? I guess at the end of the day what determines your diagnosis is how you progress right? and whether or not you're able to fully recover from the flare-ups.

I don't fit with what you quoted from the NMSS. I was diagnosed with Relapsing/remitting MS. I have had spinal cord involvement from the beginning. I have very few brain lesions.

Recovery from an exacerbation (relapse, attack, flare-up) can be complete (no symptoms) or partial (residual symptoms) with partial being the most common.

I was diagnosed with MS at the age of 24, symptoms since childhood. I got married at the age of 20 so I had only been married 4 years when diagnosed. We have 2 children who were born after my diagnosis who are now 27 and 25 years old. We are coming up to 36 years married.

Don't put your life on hold, we never know how long we have here. Your girlfriend knows what's going on with your health if she chooses to stay or go is up to her. Stay on the path you are currently on, adjust and change with what life hands you --- good or bad

[Carolinemf]

Hi again Bill,
And please don't worry about there being any kind of annoyance on my part i like to feel useful and if I can be of some help to you that's a bonus.

your diagnosis is how you progress right? and whether or not you're able to fully recover from the flare-ups.

Yep your pretty much spot on . But I do caution you not to get to hung up on the type of ms you MAY have at the moment. There is a new blood test that is being developed that should be able to determine more efficiently in the future the type a person has, but by and large none of us definitely know what type we are - it is a matter of a docs perception of the info that is known to them and you, and this can vary enormously from Doc to doc, individual to individual and from month to month( even sometimes day to day). A lot of people , me included, can plateau and only have basically annoying symptoms for some times long periods,then have a relapse,out of the blue, waking up one morning unable to speak.

I don't exactly agree with you that you haven't officially been diagnosed yet sorry.
You have evidence of lesions dating back over 7 years,and a positive spinal tap, you have been referred to an MS CLINIC during that time and had multiple follow up MRi's and specialist apt's. They may have been vague when discussing things with you but it sounds like the general consensus is that the cause of your problems has been determined already. My advice would be to accept that- find out as much info as you can- and go to new doc with a list of questions you need answers to- and consider your treatment options , because one large advantage that you have, that us older patients didn't have, is with treatment options. And as always the efficacy of any treatment increases the younger you are and the earlier you begin taking it.

I am very surprised that treatments haven't been discussed with you by docs before. Maybe they thought you were so stable that this wasn't considered necessary then.

I can identify with:

As I said earlier, until now, I used to tell myself that ignorance is bliss - i didnt read about MS at all, it was easy to sort of ignore my MRI results as I was feeling OK. But now with the symptoms kicking in, I have started reading more about the disease.
I only dealt with my ms if it got in my face and I was experiencing a flare and every 6 months went to neuro and had a few MRI's. I tried as much as I was able to ignore it and get on with my life. I did try a couple treatments but they were worse than the ms so after a while i stopped until about 5 yrs ago when i changed neuros and began Tysabri treatment. And in the last few years I have progressed and cognition problems are bothering me more and fatigue etc. So I've almost stopped work now and I have the time to do the research and educate myself as much as possible unlike i did in the past. That is how i ended up on msw too a little under 2 yrs ago.

I have read a lot of posts on here that discuss the position of lesions etc and the possible consequences of them. to be Honest none of my neuros discussed this topic in depth. I know I had a spinal lesion that was old when it was first mri'd and i haven't had a huge amount of them in the brain, several large and a few smaller spots. My last mri in Dec actually showed one of the largest had disappeared !! Doc was quite surprised.

I had begun taking supplements etc this year and was adhering to a diet that is said to help so this possibly contributed to this, though doc was not very interested. I recommend you research the info on diet that is on here because this has helped me enormously with 'feeling well'. I had never bothered with these types of things previously.

All the best, hope you find this helpful and anything else - just ask,
Caroline.