Unsure if I have MS, not enjoying this limbo ! (sorry to ramble on in my post)

New diagnosis and before diagnosis
1

Hi

I am a 38 year old active, full time working mother of 2 and up until now, very very healthy!

In August of last year I had an experience at work where the sight in my right eye, went strange. I had a crackling effect in peripheral vision and just could read my computer screen for the life of me!

GP suspected poss isolated migrane (never had one before), she referred me for an MRI, where they picked up the lessions on my brain that apparently are in line with someone who has MS. So I left the specialist that day with this news, I knew nothing about MS as I’d had no cause to do so.

I have read a little on the subject and now suspect that some other symptoms that I have noticed over the last 2 years or so, could be related, I just had never made to connection before with MS, I just put it down to me not being 20 anymore! The symptons I refer to are cognitive, for example my general memory is rubbish, where as I used to be super sharp. I will also struggle for example in a arguement, I cannot forward plan my points/arguement, hold that thougth and then delivery it in the conversation, I just cannot organise it in my head and get it out of my mouth!! Very frustrating when I generally used to reign supreme in an arguement or a a bit of argy bargy!!

I also will go through phases where I know the word I want to use but another word entirely comes out!!

I have more recently suffered some physical problems, painful enough that I have been back to my GP, who prescribed Amitryptiline. I’ve had what I would describe as shooting, stabbing, burning pains in my right arm, I suffered a 2 week phase when it was really painfull, the pain spread to the right side of my head in and around my ear and then up the back of my head. GP referred me back to hosp to see an MS nurse and now am due to have another MRI in 2 weeks to see if anything has changed. Ironically when I finally got the appt to see the MS nurse the pain had gone completely and I felt a right wally going to see her as I felt fine!

In short I supopse I’d like to know if anyone thinks my sympton sound like anything they have suffered?? Also, how do I know if I have MS, can my specialist give me a definitve yes or no?? Not really sure that I have anything to gain from knowing, I suppose advise on the way forwards perhaps.

Anyway, I’ve not shared this news with any family or friends as of yet, so communication through this site might be nice!

Thanks for listening

Lucy

2

Hello and welcome to our little world of oddballs…I say that as you will find most of us have strange feelings and sensations that are very difficult to describe to non MSers but everyone on here will know exactly what you mean.

Yes your symptoms mirror those of many of us,however dx (diagnosis) of ms is done through eliminating other conditions that mimic it and are treatable…and there are quite a few.

Having an ms nurse appears to indicate they have all ready decided it is ms and symptoms having gone is something they are accustomed to in relapsing remitting ms so she would not see you as a wally just someone who had a relapse prior to the visit…I am not medically trained so this is purely opinion.

I am afraid you will have to wait until you see the neuro for a definate dx but be aware they often stall before giving a definate answer because as I said they prefer to see what happens over time. Its good that the gp is proactive in giving meds as many say you have to wait for the neuro to prescribe which is rubbish and there are some good meds to help with pain/stiffness etc.

Welcome also to the world of cog fog…or brain farts as my kids call them…thats a whole new world which most of us can empathise with. Y ou will find many related posts on that subject.

I can understand the not telling family etc as that is my way too but if you need help and support in a more hands on way is there maybe one friend or hubby/partner to help you?

Take your time reading up on it but it would be worth reading the society info as it will give you a broad overview…and by that I mean dont panic that it will all happen to you…It has to cover all eventualites.

I will shut up now.

Take care Pip

3

Hi Pip

Thanks for getting back to me.

Ha cog fog, brain farts, perfect descriptions!

Yes I do feel I have a good GP, though she doesn’t know that I ignored her and didn’t take the Amitrypitiline after I’d read the leaflet they came with about them being an anti-depressant! I struggled through the week downing loads of Nurofen Plus, which if I’m honest didn’t do much other than just take the edge off. I have since learnt that they are indeed used as anti-depressants in a much higher dosage! Will be taking them when/if anything like that happens again.

Will take your advice and have read through the site.

Thanks and keep well

Lucy

4

Hi Lucy.

I am another undiagnosed as yet and waiting for MRI scan etc.

I have been taking Amitriptyiline for years for migraine. It is used as a preventitive not justas an anti-depressant. I don’t take anti-depressents. I also didn’t realise it was used for nerve pain in MS until recently.

I get horrendous brain fog! Such a dizzy mare lol.

5

Yes if its the low dose it is def for nerve pain and is well worth getting into your system and your body used to it as over the counter pain killers do nothing for nerve pain.You will see that many of us also take baclofen for the tightness/ pain and spasms in various parts.

Many of the anti convulsant (epilepsy meds) are also used so dont be suprised by meds that at first glance seem a weird choice.

Hope today is a good day

Pip

6

Hi, i am also a mother of 4 no less, and am 38 and was up until 5th march 2012 healthy!

I am new here and wanted some advice or help as to what the future holds?

It all started on 5th march…i was eating dinner and had an intense burning pain under right ear and up towards back of my head. i took pain killers and went to bed. thought i must have strained my neck or something?

Work up next morning with really bad burning still…couldn’t bare it so went to dr appt couple hours later. Saw the dr and she said it was shingles possibly. Thought ok that explains it and thought well i wait for the blisters to appear then. By 4 pm, only hours later my hand felt funny…numb and so was my foot. I also had no sexual feeling at all! This was probally the most distressing part ! Again phoned dr asked if this was normal and made appt to see them next day. On arriving at dr appt on wednesday am…she gave me a thorough exam and noted that my left leg had no reflexes and i was indeed completely numb on left side from chin to toe…with it dividing exactly down the enire left side of my body! very unsettling. My gp then phoned my local hospital and said she thought i was having a TIA/stroke! you can well imagine the panic! The next morning i was called to immediately get my butt to hospital and where they ran MRI of head and neck, scan of arteries in neck and stabbed me with pins and electrodes so see if i could feel it all!!! lovely ! then after returning the next day for the results…he announces its not a stroke and they have no idea whats wrong ! Again Brilliant news !

So i reutned to my gp with the results and he refers me to a neurologist (which the appt is on 13th june!) and says he sure i have MS.

Over the last weeks (its been 9 weeks and counting) it has improved to an incessant buzzing all down arm and leg…the feeling has come back a little but i cant feel temperature at all on that side and if i am gently touched by anyone or anything its like being given a small electric shock…if i flex my head forwards i get a uncomfortable zing down my spine all the way to the underside of my heel and i have the shakes in my hand and leg at random…typing now is just hilarious…i have to really concentrate. My job is hard enough as it is without dropping stuff and stacking it at every turn ! My left arm and leg are heavy feeling like lead lined bones and the back of my head has an annoying sporadic itch which drives me nuts! I’ve had muscle spasms in my neck and twitching jerks in random areas on left sid eonly…these have made me dump more than a few cups of coffee into hubby lap! I’ve had every blood test under the sun…and happy to say i am not vitamin deficient not have thyroid probs nor a virus! That helps to know i sure. I basically healthy up unitl that first point.

Its the not knowing and what happens here on in which frightens me! i have 4 kids, husband and as a dental nurse i find it hard to concentrate and juggle everything so as i not a danger to myself or my patients! They say dont stress as it makes it worse, but i find this impossible ! Any ideas if it is really MS or can i get help to try and make this relapse of weirdness go away whicker…any help or advise is VERY welcome!

7

Hi Anon and welcome

It would be best for you to start a new post, just about you, so that more people see it and you get more replies. In the meantime… please don’t panic! MS is terribly scary in the beginning, but we all find out sooner or later that it’s really not the end of the world. Life really does go on - maybe a bit differently than before - but it can still be good.

Making a relapse go away quicker. Hmm. The medical way is steroids, but they work best when taken early on and they’re not exactly the most pleasant or mild of drugs! The other way is lots of rest, eating healthily and avoiding stress - basically give your body the space and tools to get better asap. Ultimately though, it’s a matter of trying to be patient. (Yeah, I know!)

Take it one day at a time. Prioritise things (housework is NOT important!), rest, delegate tasks to your husband and kids, and generally don’t be too hard on yourself. It’ll be ok!

Karen x

8

Hi CT1980, rizzo, midnightmoon and Pip

Thanks for the kind words and for the advice on the Amytriptiline, I will defo give a whirl, if/when if it happens again! Guess I really do just need to try it and see what sort of effects it has on me.

CT1980 - Good luck with ur Neuo appt next week, hope you get your answers!

Midnightmoon - MRI pending soon for you I’m thinking?? Hope it goes well for you too. OMG, don’t talk to me about brain fog… I have quite genuinely noticed this over the last 2 years but have never made a connection to MS, that is until MS was suggested up after my initial MRI last year. Its so frustrating!! I come across a such a plank sometimes, just nodding and saying yes because I can’t find the words to say otherwise! Very difficult at work would you agree??

I have an MRI a week on Monday, so guess I will know more a couple of weeks after when I get some results!

Anonymous - Nice to hear from you, seems we have a couple of things in common! Aside for you too being a busy working mummy, I’m right there with you on the pain you experienced, mine wad very very similar, under and around my right ear and up towards back of my head. I too took pain killers and went to bed. You mentioned no sexual feeling, did you mean the desire for or literaly numbness?? I too am trying not to panic about the whole thing, it difficult as its a massive unknown, and trying to juggle everyday life, kids, work, husband working away etc.

Good luck with everthing and take care, as the others have sad, try no to worry. I’m sure you won’t endanger any of your patients lol!!!

Take care all

Lucy x

9

Hi CT1980, rizzo, midnightmoon and Pip

Thanks for the kind words and for the advice on the Amytriptiline, I will defo give a whirl, if/when if it happens again! Guess I really do just need to try it and see what sort of effects it has on me.

CT1980 - Good luck with ur Neuo appt next week, hope you get your answers!

Midnightmoon - MRI pending soon for you I’m thinking?? Hope it goes well for you too. OMG, don’t talk to me about brain fog… I have quite genuinely noticed this over the last 2 years but have never made a connection to MS, that is until MS was suggested up after my initial MRI last year. Its so frustrating!! I come across a such a plank sometimes, just nodding and saying yes because I can’t find the words to say otherwise! Very difficult at work would you agree??

I have an MRI a week on Monday, so guess I will know more a couple of weeks after when I get some results!

Anonymous - Nice to hear from you, seems we have a couple of things in common! Aside for you too being a busy working mummy, I’m right there with you on the pain you experienced, mine wad very very similar, under and around my right ear and up towards back of my head. I too took pain killers and went to bed. You mentioned no sexual feeling, did you mean the desire for or literaly numbness?? I too am trying not to panic about the whole thing, it difficult as its a massive unknown, and trying to juggle everyday life, kids, work, husband working away etc.

Good luck with everthing and take care, as the others have sad, try no to worry. I’m sure you won’t endanger any of your patients lol!!!

Take care all

Lucy x

10

Hi Nico, I am dx and just wanted to throw in that I take 40mg of amatriptyline daily and it really helps with the pain, anti depressants sometimes have a muscle relaxing function and also help with nerve pain. Anon, please please start your own thread lots of people who can help you may miss you on someone else’s thread. And it sounds like you would benefit from some of the very kind and experienced msers who come on here. Chis

11

Hi Again Anonymous

I think Chis may be right, if your in a bad place then some more experienced MSers on the site may have some sound advice for you.

Totally sympathis with your state of mind, have you been able to talk about it with any family or friends at all?

12

Hiya. Yep, my MRI is next week. 18th. Not sure what day that is but it’s marked on my calendar. I have post-it notes everywere. In fact, I have so many they just confuse me! lol

Good luck with your MRI. I’ve never had one before and was feeling very anxious about it but a few people have told me their experiences and now I am much calmer about it. A friend of mine has a son with Tourette’s and he has volunteered for two MRI’s in aid of TS research so I am thinking if a 12 year old boy can do it freely then so can I! :).

Jo

x

13

Hi The one I have coming up next week will be my second, suppose they’re looking for what’s changed over the last few months. You’ll be fine, half an hour in a tube listening to the radio, nobody shouts “mum”, the phone doesn’t ring, ah peace! Best of luck x