just been diagnosed and very scared, trying not to show it

Primary progressive MS
1

Hi everybody,

my name is anne-marie and before i start I do apologise for the length of this post and the number of questions i have but I don’t know anyone in my life who has ms. I had a phone call from my neuro consultant yesterday to say that he had the results of my spine mri and he is sure i have ms. After 18 months of not knowing quite what is going on i finally know. this all started in Nov 2010 with my whole left side going numb and feeling strange sensations ( lasted approx 6 weeks ) I thought I had overdone things on one particular machine at the gym. Went to see GP for migraines initially but I also mentioned the numbness and he refrred me to neuro as a precaution.

Saw neuro consultant who did various tests, needles and using limbs for weightbearing etc. He also booked me in for a brain mri. Had brain mri and was called back as they had spotted some areas of inflammation on brain. So he said it’s likely to be ms because of my other symptoms. I remember crying at that point as I hadn’t really thought I could have this. He booked me in for an evoked potential eye test and a lumbar puncture. I really worried myself to distraction over the LP as I’ve heard such awful things about it and one slip of somebodies hand and you can end up paralysed. Anyhow I decided that I couldn’t go through with LP but had the eye test which came back normal and as I hadn’t had any other symptoms for the last 4 months the neuro consultant decided to sign me off.

Everything was fine untill just after xmas 2011 when the right hand side of my body around my abdomen, back area started to get shooting pains and burning feelings together with a horrible itchy feeling. There was no rash and I always felt as if I couldn’t relieve the itching as it felt deeper in the skin than it should be, ( i don’t know if anyone can relate to that ), then the whole of that area went numb and this awful pulling and pushing, sqeezing feeling has been left with me. I went to GP who said she thought I had had shingles and it was post neuropathic pain. I was 99% sure it wasn’t shingles but how could I argue? Anyway, she prescribed 900mg of Gabapentin per day and also referrred me back to neuro ( only because I pointed out that it seemed fairly similar to what I had before ). The gabapentin has controlled the abdomen feelings to a certain extent.

I saw neuro in Feb 2012 and had also started to get a weird feeling in my right arm, I can only descibe it as like having your blood pressure taken when the cuff gets to the tight bit and also pins and needles in my right thumb. He did the needle tests again and booked me for the spine mri .

I’m so terrified as I don’t know what sort of ms I have, since Feb my right arm has become much worse, I have such pain and stiffness in it together with the horrible tight feeling and pins and needles. Sometimes it feels like i’ve got weights on it and it’s being dragged down, Does anyone else have these feelings The feelings can be so intense they take my breath away. I’ve seen the GP but she has just doubled the dose of gabapentin. Unfortunately this has not eased the symptoms of my arm. Also, this probably sounds crazy, but has anyone had problems with their vision at night? I have found that when i wake up during the night i see the colour red. I’ve lost count of the times i’ve thought i’ve seen a cars rear lights shining into the bedroom when it’s just my vision going funny. Sometimes it’s like a red mist, other times it’s well defined shapes.

The consultant has referred me to a ms nurse so i’ll wait to hear from him/her. I feel as if i’m going downhilll fast. It’s frustrating as i am right handed and now can’t use my r/h properly, i can’t grip things, can’t write unless i do a 2 hand grip and am afraid to drive. In the last 2 weeks I’ve been suffering some incontinence but I don’t know if this is ms or the gabapentin. Has anyone on here suffered incontinence as a result of gabapentin?

Does anyone recommend any sort of medication that might relieve my arm problems?

I apologise again for my rambling and hope you’ve not gone to sleep reading this!!!

Thanks

Anne-MArie

2

Hi Anne-Marie, what an awful time you’ve been having. Terrible to have all these symptoms and not much information! I can relate to a lot of the symptoms you describe… although the vision problems don’t sound like anything I’ve heard of before… but the trouble with MS is that it does present different problems in different people so sometimes you can have symptoms that aren’t common to other people with MS.

It takes time for a neurologist to be able to tell which type of MS you have. They often will monitor your symptoms for a year or even much longer until they can tell what type. At this stage though I wouldn’t wouldn’t worry about the type… MS is MS and learning what type it is will come in time.

I haven’t heard of gabapentin causing incontinence problems but it can be a problem with MS. The nurse (who hopefully you will see soon) will be able to advise you about ways to deal with it and there are also drugs that can help.

There are all sorts of myths about lumbar puncture… in fact loads of people have them without any problems at all. I’ve never ever heard of anyone being paralysed by having one (I was terrified when I had one and then couldn’t believe how easy it was)… but anyway, it sounds now that it won’t be necessary.

Until they work out what type of MS you have the medication is quite restricted. For primary progressive a lot of people use gabapentin. There are a few others, Amitripyline is an antidepressant that is used in low dose for nerve pain. Pregabalin and Topamax are both a bit like Gabapentin (ie low-dose epileptic drugs) that are also used… but Gabapentin is probably the most common. When you see the nurse you will be able to discuss the different medications.

You’ve no doubt noticed that symptoms are worse if you are tired or stressed, so try and rest as much as possible. The problems with your arm sound really awful, but again, I’m sorry to say, not unusual for MS.

Have you anyone you can talk to about this? It’s a terrible thing to be going through on your own and I hope you have someone to support you and help you come to terms with your diagnosis. I know you’ll find this hard to belive, but there is life after getting MS. It takes time to get used to the diagnosis and to understanding how your own body reacts to the MS… to learn to live with your symptoms… but it does happen. You take it one day at a time and coming on here can be a real boost… just knowing that other people understand what you’re going through!

I suggest you post on Everyday Living as well… it’s a bigger group and is for everyone with MS, whatever type.

I hope this has at least answered some of your questions. Remember, everyone on here knows what it’s like… the not knowing, the distressing symptoms and getting the diagnosis. You’re not alone although I know at first it feels like it. If you haven’t anyone to talk to about your fears your GP can refer you for counselling on the NHS. It can be a great help just to be able to talk to someone and they can really help you sort your feelings out.

Take care… and I mean that… give yourself lots of TLC.

Pat x

3

Hi Ann-marie.

Not a lot more to add as Pat has covered most things.

Just take things slowlly and learn to read your body.

Please remember this forum is here for you,and we are a friendly lot[well most of the time]

Take Care.

Chris.

4

Pat and Chris has covered everything, I can only read for a little while BUT this is a great site, take care M

5

Thank you to every body who has replied to me and your kind messages. I hope that i can deal with these symptoms as they seem to be getting worse day by day. It’s all happening too quickly and I had so many plans for my life and this has knocked me for six.

I do have a loving husband who says he will be there for me and care for me should things get really bad but I do fear that he won’t cope. He is finding it difficult to cope with my sudden mood changes, is it normal to sometimes feel like you want to hurt people and I actually mean physically?

I don’t want to become a burden to him or any of my family, I haven’t told my parents about my positive diagnosis although they know about some of the symptoms I am having.

Today my right foot keeps giving way and I can’t walk properly. I don’t know if I’m having a remitting relapse, how long do these lapses last on average?

How do you all cope? I feel so desperate and hopeless and worthless.

I will look on the everyday living posts, thankyou for that Pat. Have you found that any supplements or vitamins ease your symptoms? I would much prefer to go for alternative medicine if possible.

Thank you again everybody, I’m so grateful for forums like this.

Anne-Marie :slight_smile:

6

Hi again Anne-Marie, Have you read ‘What is MS?’ tab at top of this page? Some good info on there about the different types of MS and about symptoms

Relapsing Remitting means that you have a type of MS where you have relapses and then you go into remission (Remitting) when you don’t have symptoms or the symptoms are much less. So take a read about it if you haven’t already.

Emotionally we have a double-whammy with MS. The lesions in our brains can cause mood changes and depression (and sometimes highs), but also actually learning to live with MS and the symptoms can have a psychological impact… so yet more mood changes and depression.

Feeling that you want to hurt someone physically is a sign that you are suffering with very bad depression and anxiety (is it any wonder?)… BUT it is extreme and Anne-Marie you need to get some help with this. You need to go and see your GP and get something to help you get through this. Lots of people on here take antidepressants and say they really help get them through a bad time. As I said before, counselling can also help a lot. Don’t put it off. The GP will know exactly what to give you and how to help you. Be honest about your feelings.

You need to get yourself into a state of mind where you can cope with this. Having MS does not mean you will be a burden on your husband. It does not mean that you are going to be in bed having to be nursed night and day. It does mean that you are going to have to make changes to your life that you had not planned for, and you can do that. The fact that so many people do it proves that it can be done. But first you have to cope with your depression and anxiety which are stopping you from being able to cope with this.

There are some alternative therapies which some people say help, but deal with the depression first.

Please call your GP and make an appointment.

Take care,

Pat x

7

We are all friends here Anne-Marie, so we are happy to assist you in any way we can…In addition to seeing an MS Nurse, may i also suggest that you get in touch with your nearest MS Society Branch and join it i think the support they can offer you would be invaluable… Take care… M

8

AlsoHello Anne Marie I have just read your post, you are not alone, You must look into LDN for the bladder problem, you have to get a private subscription Dicksons/skips pharmacy but it is the only thing I can say that has helped that awful feeling of wanting a wee all the time!, Also I take Baclofen, couldnt live without it, relaxes your legs and it gives you really good nights sleep, please try these x

9

I’m sorry you’ve joined our world - it is a club that we would all like to close the membership to new members because that would mean that they had found a cure for MS. However, welcome on board and hoping we can help you come to terms with your situation.

One of the first things that really helped me was my physio asking if I had ‘claimed my MS’ yet’. I didn’t understand at first but gradually the realization hit me - I have MS and I am the expert on my MS! We all suffer with the same decease but we all suffer differently. Gradually, as you listen to others, you pick out the bits that are similar to you and find how they have coped, and come to terms with things.

After a while you begin to realise that you understand your body and your MS better than the experts, you learn what works for you and what is a possitive no-no as far as you are concerned.

Be kind to yourself - do NOT try to do too much at once, do a bit and leave a bit is the way I’ve learned to cope. If you feel good - DO NOT OVER-DO IT!!! You will live to regret it I am sure of that.

Remember - energy is not a bottomless pit. It is a valuable commodity to be used wisely - just use a little then allow the pot to re-fill rather than use it all at once.

Nothing is impossible BUT it does take an awfull lot longer with MS.

We are all supporting you on your new journey and willing you to find the easiest route (sorry no sat-nav’s have been programmed as yet!) Luv Ann

10

Hi Anne-Marie. Sorry to hear what you’re going through. It helps if you have either an Occupational Therapist or MS Nurse to help you. I’ve posted this advice a few times in this forum, so I hope it helps.

  • With people who have Multiple Sclerosis or Lupus and have difficulties with their mobility, they can use crutches to walk (or a walking stick). Outdoors, they can also use a four wheeled walking frame. Indoors, a four wheeled trolley can be used. Contact your local council (e.g. Social Services) to ask if you can get any of these items free of charge.
  • The NHS Wheelchair Service can provide wheelchairs free of charge, and someone will visit your home address once a year to check the wheelchair. You need to be referred by your GP to the NHS Wheelchair Service.
  • For hospital appointments, some hospitals will provide transport (ambulance or car) where they pick you up and take you back home, so call the hospital or your GP to arrange this (it’s likely your mobility will be assessed with a few questions before transport is booked).
  • Occupational Therapists can arrange for grab rails to be fitted for the bath, or to give you a bath board to sit on.
  • As for essential gardening (e.g. removing weeds), if your landlord is council or housing association they should do this for you.

All the best Anne-Marie.

11

Hi Anne-Marie

Sorry to hear your news. I was diagnosed with PPMS about 30 months ago. My doctor recommended I went on Citalopram 25g once a day to help with depression while I learnt to accept my MS. I am still on it but the dose is so small that they are not worried about me on it still. I have also tried gabapentin for the pain and found that at night I used to see things in red and also weird shapes that were really not there (I saw darth vader lying next to me one night)!! Came off it because it did not work for the pain and made me sleep most of the day.

I have incontinence which is due to MS and have had botox injections into the bladder once a year for the past 2 years which helps an awful lot for about 10 months. It is great.I have nortryptaline 20g tablet 1 at night for my pain and it seems to work very well. I tried to do without it but soon found I couldn’t, it really makes a difference. It works by stopping messages to the brain. My neuro recommended quite a few tablets before the right one was found for me.

I started a pilates class at the beginning of the year which I have found very useful. I do not fall over quite so much and it helps a lot with balance. Somethings I have to miss but you all go at your own pace and there is another lady there with MS as well. Hope this helps.