Hummmm :(

New diagnosis and before diagnosis
1

Hello all

Not sure I should even be on here so I apologise if I am wasting your time. Please could you give me an opinion?

I have had a few random things happen, ten years ago I had optic Nurosis, I lost sight for eight weeks in my left eye, its now 85% normal. Last year I had a period of loss of feeling in my foot, very odd as I kept tripping and stumbling. The numbness in my foot went after a few weeks but the stumbling continues…

I now have a numb right hand, tinglining in my left hand. I fell head to foot down the stairs. I am so so tired, well tired is not the word.

I have been sent to the Neurologist by my GP, He was so abrupt, but sent me for tests on my hands and an MRI. My MRI is in early Jan. The tests on my hands showed the nerves on my right hand are not responding at all, slight decrese in the left.

My GP who I saw this morning seems to think we are looking at possible MS, I am just confused! What ever it is, I cant work at the min, why am I so tired all the time? why does my leg keep kicking out randomly? why is my concentration so rubbish??!!

Ragghhhhhhhh!!!

Sorry for all of that! I am just a little lost!

x

2

Hello, and welcome to the site

You’re not wasting anyone’s time at all, and there is no need to apologise - we all understand!

It’s rather too early to know what’s going on, but optic neuritis (ON) is often a first sign of MS and your other symptoms are very consistent with MS. That doesn’t mean that it is MS though - there are other possibilities and it can be tricky to work out exactly what’s going on. Hopefully the MRI will give the neuro the info he needs to be able to diagnose you, and to get you the meds and treatment you need to get on top of your symptoms.

Fatigue is really common in MS and in other neurological conditions. It’s caused by several different things and is usually worst when we are relapsing (i.e. having an episode/attack). There are meds that can help along with making changes in the way you do things (like stopping before you get tired, breaking tasks down into small chunks, stopping doing the unimportant tasks, delegating, etc). Exercise also helps a lot (not when you’re bad though). The key thing is to listen to your body and rest when you need to. If you can get your fatigue under control, you’ll find that your concentration will improve - fatigue makes everything worse :frowning:

The leg kicking out thing is probably a spasm. There are meds to help this, if it becomes a long-term problem. (It’s one of my long-term symptoms, but people would never know!)

Some positive things to hang on to through all this:

  • if it’s MS, a long gap between the first and second attacks and a first episode of ON are both signs that somone is more likely to have milder MS.

  • you have recovered well from your previous attacks so there is no reason to think that you won’t recover really well from this one too.

I hope your symptoms start to improve really soon.

Karen x

3

Karen,

Firstly may I say thank you so much for your reply, taking the time to do that means a lot to me. I did not reply at the time as I struggled to find time or energy to log on to the computor.

I have since had my brain MRI, on Wednesday after waiting two weeks and hearing nothing my partner called the Neurology department. The secretary said that they had been dealing with my case that very day, She said that although the Neurologist was fully booked in his clinic for the next four months! He has requested to see me next Tuesday ( 31/01/12) He did not have any appointments but has added me on to the end of his clinic. This has sent the family into panic, thinking it must be serious if he wants to see me so quickly. I have to add at this point I am not panicking, just dont want to cause them any upset.

My partner was so worried that she called again this morning, explained how worried everyone was and please could we at least rule out a tumour. The neurologist was very kind and telephoned this afternoon. He said that it was not a tumour (phew) but that he had found ‘significant abnormalitys in the brain’ he said that these related to the ON that I had in 2001 and were the probable cause of the difficultys I was experiencing at the moment. He would not say anymore other than that he would show me the scan on Tuesday and discuss further.

So that is where we are at the moment, not sure what to make of it all really. My partner has of course googled everything possible and all sites lead to MS. I just really want to know so the family can stop crying!!

If you have taken the time to once agin read my ramblings then thank you :slight_smile:

Take care x

4

Hi violet i had optical neuritis about 10 years ago too.I did not know it was ON, but subsequent vep test a few years back confirmed i had it in both eyes.

Since my ON i have had lots of weird things happening to me like you really. 2006 september couldnt get up or walk properly, and havent worked since. I have had lesions on my MRI and o bands in my lumbur puncture but still no diagnosis. My problem was alongside the LP my blood test showed inflammation so this rules out MS, but it doesnt explain why I have been getting slowly disabled.

I have fallen down the stairs about 3 times reulsting in broken bones over the last 15 years.

Try not to panic too much. big huts. Mariax.

T

5

Hello again. So sorry you had such a bad spell, but pleased that things are moving for you now at least.

Significant abnormalities in your brain that are related to your ON does rather shout MS, so (although it might be something else!) it’s probably wise to be prepared for a diagnosis of MS on Tuesday and perhaps have a wee look at the msdecisions site which has lots of info on treatment options. I say this because if the neuro has fitted you in there is a good chance that he’ll talk about DMDs/DMTs (disease modifying drugs/treatments) sooner rather than later. If you already know about them, it will speed up actually getting them (the patient has to make the decision about what to go on, which normally means going away and thinking about it, and then waiting for a follow-up appointment to discuss it with the neuro, then wait for the prescription etc to be done - i.e. it takes a while!).

The reason that everyone is freaking out is probably because they don’t know very much about MS. TV programmes are forever portraying MS wrongly and almost all non-MSers either know nothing about it or think it’s very quickly disabling and/or fatal! The truth is very different of course. Reading everything on the internet is almost certain to scare people too. Just about the only consistent thing about MS is that it is massively variable. You will NOT get every symptom that’s on the internet! And some of the symptoms that you get may be very mild. The more severe ones can be helped loads these days with meds, therapy and equipment too. MS really isn’t the end of the world!

I hope you everything goes smoothly on Tuesday. Let us know?

Karen x

6

M Turner, so sad to hear you have had all these terrible things happen to you! You must be so frustrated/worried/fed up! Thank you for your kind words and I really hope that you get some answers soon! Or at least some rest and a break from all this!x

Karen, thank you for your reply,

I am really not scared about MS as silly/naive it may sound! I am however terrified of upsetting everyone. I am also terrified of needles!!!How do you take DMD’s? Do you have to inject them all? How on earth do you choose? xx

7

and welcome.

if it is ms, you already know how it feels and you are dealing with it ,just means that you have a name for it.

and everyone does seem to have the image of a wheelchair as their first thought, i know i did, and as karen says it does seem to be the worst case scenario that gets portrayed in the media.

cant help with the dmd’s question, sorry, not yet formally diagnosed.

hope your appt goes well

love mandy xxx

8

Awww Thank you!

I’m just not sure how to feel! Take care of you xx

9

Choosing DMDs is hard, but there’s no “right” choice so people just go with whatever one they think will suit them best. The “first-line” DMDs all have to be injected (first-line means what most people get offered in the beginning). At least some of them come with an “autoinjector” so you don’t actually have to do the injection with the syringe yourself.

I used to be on Copaxone and am now on Rebif. I injected Copaxone manually and although it freaked me out a bit in the beginning, it was honestly a complete doddle very soon. I use the “Rebismart” for Rebif. The Rebismart is a very nifty device which is perfect for people who are needle-phobic - it’s designed so you don’t have to see the needle at all! The needle is contained in a little cardboard cup thing which you stick on the end of the device, press a button and then take the cardboard cup off, press it against your skin and press another button to do the injection. When it’s done, you put the cardboard thing back on, press a button and then take the cardboard cup off (with the needle in it) and stick it in a bin. Really really easy, and no sight of a needle!

If your neuro thinks your MS is highly active, he may offer you Tysabri. This is given in hospital as an infusion (i.e. given via an IV) once a month. It takes about 2-3 hours I think.

Of course, this could all be jumping the gun!

Please don’t go down the route of thinking that you are upsetting people. It’s not your fault that this has happened. They’re upset because they love you and are worried about you, plus they probably don’t know much about MS. It is not your fault.

Karen x

10

I totally agree with Karen about the misconception of MS in peoples eyes.

I have known people with long term MS over 30 years, who live normal active lives still albeit slower lol.

I know of people with MS who put themselves into a wheelchair early and WARNED me not to do that. One of them a mature student took 8 years to get diagnosed. As soon as she was finally told it was MS everyone overwhelmed her with their opinions of it, how disabling it was and her life would be over OMG. She told me that. She had put herself into a wheelchair because her legs hurt and were so tired when she walked, i think she was practically brain washed into it. IF THAT MAKES SENSE.

I taught her I.T. for 3 years, she was so amazing. Passed every exam and got stronger and stronger emotionally and physically, but she started to realise that all the negative talk around her had become her prison and she was determined to get back on her feet again.

She started HBOT therepy and special physio therepy and when I left the college to move to another job she was WALKING with the aid of a rollator. BUT WALKING…so proud of her.

I have heard from a teacher friend of mine that she still goes to college even now, and has virtually taken every I.T. exam there is lol probably more qualifications then the teachers lol, and that she has improved immensley and is now on her feet although she still uses a wheelchair if she has to walk to far…no point in pushing herself.

I too use a wheelchair, but this is for supermarkets only. I just cannot get around a supermarket and know that trying to push myself to do so is stupid as it just makes me bad for the rest of the week.

I am 60 though and at my age one expects things to get slow or fall off ROFLMAO. LOL.

Just be positive which you appear to be which is great.

There are so many things out there lurking for us that sometimes MS is the safest option lol…sorry that sounds weird, but my best friend has just been diagnosed with INFLAMMATORY BREAST CANCER. Its one of the most agressive. She has led a healthy diet, doesnt smoke and used to ride everyday. She has faced chemo, now breast removal and the next stage is radiotherapy.

I am so thankful that god has not visited that on me.

Big hugs you will be fine Violet you have the right attitude. Good luck for Tuesday will be thinking of you. xxx Mariax

11

Hello again,

Firstly thank you all for the replys, I hope you are all doing well. Well the results are in, He has confirmed MS. Not sure what else to say really. There were eight lesions on my brain, the last and newest being the biggest, it apears to all be linked to the ON in 2001. He doesn’t want to start me on any meds until I have another relapse. So thats were we are for now, he said no different other than I now have a label! Oh well, I always wanted letters after my name…

Thank you all once again, your support has been invaluable x

12

Hi Violet Even if you are expecting the dx, it’s still very hard to take on board. Just know that there is always someone on here to share your troubles with. Thinking of you, Teresa xx

13

Letters after our names are definitely over rated. Well, there are certainly a few I could do without anyway!

It’s always a blow, even when expected. It does get easier so if you feel yourself getting overwhelmed, hang in there.

Karen x