Whats going on ?

Primary progressive MS
1

Hi, Im new to this so forgive me if I do something wrong !

I was first diagnosed with MS some 8 years ago, just after the birth of our daughter… Initially I just has double vision when I was tired and after some tests (and being told I probably had a brain tumour!) was finally told I had MS. that was when I was 40.

Well its been a ride for the last eight years, and my consultant still will not diagnose the type of MS, but I am personally thinking its Primary Progressive as I do seem to be getting worse.

Currently I am tired, my balance is off (holding on to anything as I walk), my right knee is painful…my knee is currently under a consultant and having just had a scan on it am waiting to see what he thinks, is it wrong to hope that surgery will help? and in the last month I have been getting a pins and needles effect in my right hand… it passes.

I still work, but that is becoming a bind, mainly because of the 120 mile round trip there and back three times a week, the other two I can work from home…I write and support software for an accountancy firm.

My relationship with my Wife is ,I think you could say, strained; she obviously did not sign up for this and flits between wanting to care for me (a tad overbearing) and wanting to leave me, somewhere in the middle would be brilliant !! and sex, well, what sex ?!?!

Now, I know, or I think I know, that I am one of the lucky ones, and my MS is minor in comparison to others, I can still walk with aids (but not far, fell walking is defiantly out), drive, wash myself etc etc…it could be a hell of a lot worse .

So, the point of this post is …any advice from anyone on what I should be doing ?

Thanks

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Welcome to the forum!

After being diagnosed with progressive MS, what I did was to write a report, as objectively as possible, of all the symptoms related to my MS that I had ever experienced, when they began etc., and my neurologist used this to diagnose me with PPMS. Perhaps you could consider whether doing this would help you.

Like you, I’m walking with aids (walking poles), but longer hill walks are unfortunately a thing of the past. Does your knee hyperextend, i.e. bend back too far and lock when you walk? I have this issue with my left knee. I find using tubigrip helps, and don’t let your knee get cold. I started to get pain in my knee, but this was resolved by reducing the hyperextension. Typical pain from hyperextension is tenderness at the back of the knee on the inner side.

Also very helpful is a specially made orthosis (skin tight shorts) which I got through physiotherapy. They don’t really know how these things work, but it seems to provide the brain with more feedback as to the position of the limbs or something. Even tight fitting lycra shorts or tight fitting trousers can help to some degree, I find.

Knees can be very sensitive things. Hopefully surgery is not necessary.

So my best advice is to find a good physiotherapist / neurophysiotherapist. They can also advise on Pilates exercises to build core strength, which I found made an amazing difference to my balance (as well as banishing back pain).

All the best!

2 Likes
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Lawing, your a star… thanks for your comments.

Yes I hyperextend my knee, apparently to try and give clearance for my foot and thus stop twisting it… so tight fitting lycra shorts maybe a solution…nothing ventured nothing gained !

Thanks again

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Hi,

I am guessing that your doctor has not given you any DMD treatment. If he had then he would expect it to be RRMS. If he is not sure of the DX then I should think he should at least try you with DMDs.

What you must remember is that all MS is to a degree progressive and usually people dont recover 100% after a relapse .

Moyna x

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Hi JonW and welcome to the board.

Does sound like PPMS. As Moyna says, if they thought it was RRMS they would have given you DMDs (that’s Disease Modifying Drugs that work for RRMS).

I was dx with MS in April 2008, so that’s nearly 7 years ago… and was told it was PPMS about 2 years later. By that time, like you, I had already guessed it was.

I can walk around my flat ok, leaning on furniture, some days more than others. Useless at walking outside. Fatigue is my worse symptom though… and just feeling unwell all the time. It’s like I’ve had flu for years, minus the sneezing etc.

Sounds as if both you and your wife need some support dealing with this. Have you thought about relationship counselling? Really it’s a case that you need to communicate your feelings and fears to each other and it usually helps no end if you’ve got a 3rd person there to help things along… and help thing from turning into a shouting match!

It’s a hell of a thing to learn to live with but most of us get there sooner or later.

One interesting thing, many professionals now think that people with PPMS might have had a very mild form of RRMS for years and only seek medical help when things have got worse… in other words when it’s become progressive. I’m sure this is what I’ve had as had years of funny symptoms and periods of fatigue. Anyway it doesn’t actually change anything but just mention it as it’s worth thinking back over your life & seeing if there were earlier symptoms.

Talk to your wife about relationship counselling. It’s worth trying to save your marriage and the sooner you get help the better.

All the best,

Pat xx

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I forgot to mention that if you have foot drop, one of these “foot up” things may help - these things which fix to your shoe and ankle with a piece of elastic to help keep your foot up. If you notice your foot sort of slapping down on the floor when you walk, this may really be a good thing for you. Physiotherapy gave me one for each foot, and they do help. Do get referred to physiotherapy for advice anyway, before splashing out on anything - they may be able to supply you with things and you get the opportunity to try things out!

Otherwise, on the frustrated, tired days, I find it’s a case of “plod on”, and I remind myself that I am still a whole person, despite some malfunctioning bits!

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Wearing a Fixed Swedish Knee Cage for about a year solved my problem with hyperextension.

http://www.chaneco.co.uk/orthotic-product.asp?prodId=120&specialoffer=

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Hi JonW

You have been given good advice, so I just wanted to say welcome to the forum, and look forward to seeing you on the boards again.

Pam x

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Hi Jon and welcome to the forum. I can’t add much to what the others have said except to tell you that my daughter and I had counselling after my dx and I can’t recommend it high enough. There’s only the two of us and it really upset her to see me struggling and I was pushing myself to try and prove I was alright and managing. Needless to say it was explosive at home!!

Teenagers are difficult enough without ms, but I can only imagine how it could affect a marriage. Our counselling was arranged by my Occupational Therapist and she saw us individually and together at home. We could talk about anything and she would mediate when Jen and I tried to sort out what bothers us.

Our relationship has never been better (we still have little rows but what mother and teen doesn’t???). We feel more comfortable talking about things that would have caused a row before but also know when to concede or give each other time to cool off.

MS is a very difficult condition to live with no matter how badly or mildly it affects you. It’s made even more difficult by being what they term invisible so sometimes you can look well but feel awful! I hope you get some answers and find the forum helpful. Everyone here is friendly, supportive and have a lot of experience with symptoms that both do and don’t appear in any book.

Take care

Cath x

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Everyone, thank you so much for responding, you are very kind.

I think I should elaborate slightly in that I do wear a carbon fibre afo on my right foot to help with foot drop, which it does, but it does not help my knee too much as I still over extend and my knee becomes painful, I have several ‘off the shelf’ knee supports and wear them occasionally, but being the vain person I am they show thru my trousers and well…

I also wear, for my own piece of mind, an ankle brace, I have twisted my ankle so many times and some times really really badly, that I have little confidence in my leg or ankle and therefor that brings its own issues.

Currently I take 5mg (I know tiny amount) baclofen tablets at night to stop leg jitters, that mainly keep my wife awake and that does seem to work well. My vit D levels were marked as low around Christmas and I was given 20mg a day of vit D3 which didn’t seem to be doing much, well personally, so the doctor decided to give me a boost, 1000mg of vit D2 once a week and no Vit D3 Now this has seemed to knock me about…very tired and weak, BUT this was in the first week, and I am into week two tomorrow.

I was given steroids a year or so back, and never again, they really messed me up, felt awful whilst i was taking them.and to me there was not any noticeable change in my symptoms.

My wife and I have been to relate in the past (some 2 years ago) and really I got the impression that we were wasting our time as there was nothing really wrong, and apart from keeping the councillor amused with our anecdotes and bickering we were not achieving much.

my wife did go and see a councillor on her own, passed there from the doctor, and that particular councillor told my wife to just leave me. my wife was not impressed with that comment!

It is highly possible that I am just feeling a tad sorry for myself and need to snap out of it.

Once again thank you for your comments.

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Jon I think we all have the right to feel a bit sorry for ourselves at times, and this forum is a great place to visit. I’m not saying you should only come and rant but everyone here understands those frustrations. The counsellor we saw was through the support network for carers so she was really experienced with our situation. Your OT might be able to help. It’s nothing like marriage guidance but deals with the frustrations of having a disability to cope with. I’m quite shocked at the advice your wife was given, and glad she didn’t go.

My Neuro recommends we all take vit D3 1000iu per day. He even encouraged my daughter to take the same dose but she’s older than yours at 17, I wouldn’t give them to a youngster. Apparently you’ll just get rid of what you don’t need. Do you take or have you considered an anti depressant? They really help if you tend to get down. I know that quite a few of us take them as depression is very common in people with disabilities, especially ms. They don’t have to be permanent but often help if taken for about 2 years.

I hope you feel better soon, you seem to have a lot to cope with, and there’s usually someone here if you need us. Take care.

Cath x

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I am new to all this. Diagnosed for 7 years but who knows how long it’s been there. Just hello and I’ve enjoyed people’s honesty. Hope all groovy