In Limbo and need support from people who understand!!

Everyday living
1

It all started in February this year when I lost sensation down the right hand side of my body and I was dragging my right leg. My hands and feet were buzzing and I felt like I had a hangover!! I went to my doctors who set me straight to the hospital as my reflexes were very weak and I had significant strength weakness down my right hand side.

I spent one night in the hospital - but they didn’t do anything at all other than take my blood pressure, temperature and some blood samples. I was discharged the following morning and told to go back on the monday morrning for an MRI. Two weeks after the MRI I went back to the hospital for my results and I was told that they had found a lesion on the right frontal lobe of my brain, but this would not cause the symptoms I was having.

I was then sent back for an MRI scan of my spinal cord - two weeks after that I received a telephone call from the hospital asking me to go on the ward that morning as they had some treatment they could give me. When I arrived I was advised that they had also found a lesion on my spinal cord at the base of my neck - I was given 3 days of intravenous steroids followed by 7 days of oral steroids.

Although the steroid treatment left me feeling very spaced out for a week or two, the treatment did seem to help, but different symptoms then started appearing - every time I moved my head up and down I was getting electrical buzzing charges down my spine, in my feet and my arms felt like lead weights. I was given another three day course of steroids and was told that I had a condition called Transverse Myelltus.

When I went back to see the neurologist he actually told me that this ‘could’ be the onset on MS, but it is too early to make a firm dx. He has said that they will not be giving me anymore steroid treatment as long term steroids carry there own set of problems and it isn’t actually making any differene to the lesions themselves.

I am now left with my upper torso being extremely stiff, have extreme fatigue and have constant buzzing in my hands and feet and a stiff neck. I now just feel like a guineau pig - I feel like I am being left to suffer and that my neurologist wants me to get worse before he does anymore for me. I may be just another number to him, but this is my life and I am extremely down about the whole thing - it’s taking over my life and my husband and two young children are suffering because of me. I work full time, which is extremely difficult and I just can’t keep my concentration levels up.

My neurologist has told me that whilst he is not advising me not to work, I certainly shouldn’t be working full time and I should look at my lifestyle and listen to my body. This is all well and good, but it’s not that easy when you have a mortgage to pay. He has also told me that he won’t be too hasty in making his dx because whether I have got MS or I haven’t, he cannot predict what I am going to be like in 6 weeks, 6 months or 6 years!!

He has said that it is a degenerative, incurable condition and they just cant predict if/when I will have a relapse or if/when I will develop anymore lesions. Is this MS?? Is there anything I can do/take to make me feel better? Sorry to drone on here but my tethers end is a distand memory now - I am completely fed up and need answers. I think it’s the not knowing which is worse.

Does this sound familiar to anyone else? Have I got MS? What does the future hold? I guess I’m hoping that someone reading this might have a crystal ball! Thank you for taking the time to read this - I look forward to hearing back from anybody at all… Melissa x

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Hi Melissa,

First of all, my commiserations to you for the situation that you’re in. It’s not nice knowing that there is something wrong, but not having a name for it. Once you have a name for what is wrong with you, it’s easier to deal with, no matter what that name is.

It does sound like you could have MS, but there are also other things that it could be, and, as I’m sure you’re aware, MS is what they’re left with once everything else has been discounted, this is why it takes so bloody long to get a firm diagnosis. If it is MS, they don’t know much about it, but there is a drug they can give you (Beta Interferon), and there are other things you can do that the NHS won’t tell you about - diets; hyperbaric oxygen; reflexology; vitamin D - it’s a question of trial and error to see which of these alternative treatments work for you.

Unfortunately, if it is MS, nobody can say how or if it will progress - if you do manage to track down that crystal ball, please let us know where you find it - I’m sure lots of people would love to have one!

hope you get out of Limbo soon,

Luisa x

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Hi,s there any way you can change the format of your post? I would love to help but myself and others may have difficulty reading the solid layout of your post. Perhaps the mods can help…

Thanks

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Hi fifflower - thanks for your message.

I’m new to this and I don’t understand what you mean - Sorry!!! What do I need to do to change my post? Sorry if I am being a wally!!

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I’ve put in a few paragraph breaks, does that help? Also, Melissa, do you have critical illness cover on your mortgage? If it is MS, you should be able to claim on the insurance - that might take away one worry at least?

Luisa x

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I really know just how you feel, as a lot on here will too, being in limbo is one of the most difficult places to be, its a long time since i wa sthere, but i remeber it too well, i thought i wa going mad,i knew there was something really wrong with me, that would never get better, i just knew, but the hard part was trying to convince other people, i.e family, medics, i fetl as though NO one was listening to me,for a long time,

when i finally got my MS diagnosis i felt a sort of relief, and felt like saying ’ I TOLD YOU’ its such a lonely place to be in too,

i drove myself mad, thinking have i got MND, pakinsons, brain tumour the list goes on,my mind was in a whirl for months,

wish i had a magic wand to make it go away,but all i can say to you is, rest as much as you can, when you can, be kind to yourself, learn to say NO and mean it,and try and take one day at a time, dont look too far into the future, find someone you can talk to about your fears,it helps to come on here, and talk to people who understand,even if it is only virtual.

no one can predict whats going to happen, MS or no MS, thats life,i have had ms a long time, and still find the uncertainty, hard.

Hope you find some answers soon.

jaki xx

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Thanx Luisa for your message and sorting my original post out for me .

It is the not knowing which is the worst - you don’t realise how complexed the human body is until something is wrong with you and it’s really hard when you don’t feel in control of whats happening!!

My neurologist has told me that I need to have at least 8 lesions until I get a difinitive dx. I only have two at the moment so I am scared about how bad I have to get before they will do anything more for me. May I ask if you are a sufferer of MS? How are you?

I do have critical illness cover luckily, but that won’t kick in until I do get dx - however long that may be! I am back to see my neurologist on 30th May, but I am sure he will just tell me the same as he did two weeks ago. Originally he wanted me to have a lumbar puncture but he has now said that it is too intrusive and there is no point in doing it because it won’t tell them anymore than what they already know. It still wouldn’t make a difference to the way I am at the moment and it wouldn’t change any kind of treatment they can give me. It’s like a ticking time bomb.

Thanks again Luisa (hopefully I have made this post more readable!!)

Melissa x

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That’s not a problem Melissa, glad to be of some help. I think you might have to become the “squeaky wheel” - for all sorts of reasons, you need a definite answer.

I have MS. When I was diagnosed, I was suffering from optic neuritis (I could barely see), they did an mri and a lumbar puncture - I have never been told what the mri showed, but whatever it was that they were looking for in my spinal fluid showed up. Those results, combined with my history (I have had symptoms since I was 12 and knew exactly what was coming - this was when I was 28) gave the diagnosis. Even then, the neurologist (who was an arse) said he was only 90% sure that it was MS, but when I asked what the other 10% could be, he kind of shrugged and said “well, nothing”. It’s frowned upon to wallop smug consultants, no matter how much they need it - luckily, this one has left my area and I won’t have to deal with him again.

I was diagnosed 9 years ago - optic neuritis was my main symptom, I also had a problem with my left leg going “dead” about every half an hour, and the symptoms that started when I was 12 were a kind of burning sensation in different parts of my skin (like wearing pure wool), these would come and go for no apparent reason.

Hope you get some answers soon,

L x

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Hi Melissa,

I’m sorry to hear what you’ve been through.

All I can do is give you my background.

In 2005 I had pins and needles in my legs which lasted for weeks. I saw a neurologist at that time and was diagnosed with ‘depression’. Symptoms eventually went away (apart from cognitive issues which I just accepted were part of being me!).

2010 - same pins and needles which spread to my arms and hands. Different neurologist said that it’s likely my 2005 episode was the onset of MS and arranged MRI scan which showed lesions to my spine and brain. I was diagnosed with MS. Later I lost the use of my arm and hand for months.

However we’re now into 2012 and I take a drug called ‘Copaxone’ - this is supposed to reduce relapses. Whilst I still have pins and needles, dizziness etc, I have got most of my functions back (for the moment at least!). My neurologist can’t tell me how bad it’s going to get, but I ‘think’ the Copaxone is helping me.

I wish you the best of luck - you will have ups and downs but somehow we deal with this, my advice to you would be to ask if you can be assigned an MS Nurse (not sure if you can until official diagnosis but worth a try). I work full-time too so I know what you’re going through. I’ve recently chatted to my boss about my cognitive issues and I hope the company are going to help me rather than boot me out.

Take care!

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Sorry you are going through this. I know exactly how you feel as I only got my DX on the 1st Feb.

My neuro gave me a DX with only one lesion, although a couple more relapses after the MRI pointed to new attacks in different parts of my CNS. This along with a positive LP and my medical history was enough for him but they are all different.

They do have to be so careful about diagnosing MS as its a hard one to prove.

As for waiting for 6 more lesions, please don’t think your going to get worse everytime you get one. Some lesions cause lots of symptoms and some dont. The one on your spine will cause you the most trouble (thats where I have mine) as all the signals going to anywhere on you body from your neck down have to pass through and they can’t get past the lseion properly (if you know what I mean)? Whereas if there is a lesion on your brain the signals can go round it. Karen aka Rizzo has a good way of explaining it all.

Has it been suggested that you have a LP? They are invasive but great for helping with a DX.

Hope you get somewhere soon x

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Hi,

I have read your comments and they are so like what i am going through myself! For several years my speak has been slurry and at times i am unable to find the right words, i went to my GP after i had several tremors and fell over due to loss of balance, my memory is also affected among many many other things. My GP thought i had had a stroke [i didnt] and he sent me to a Neurologist, he sent me for a MRI and it was discovered i have excessive scarring on my brain and MS is a strong possibility, infact he said the only possibility. Since then i have been left to my own devices as there isnt much they can do and i have another appointmenty in June with the Neurologist. The internet is a useful but scary place as when i look up the symptons of MS i find i have nearly all of them but not a confirmed diagnosis…i truely feel limbo is not a nice place to be in!!!

Sharon x

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Hi Melissa, I was dx this year and I totally agree that limbo is the worst place to be. I don’t know how many lesions I have. The neuro said in a letter to the gp that my MRI showed dramatic results, a bit like myself! I am 41 and I can trace back 20 years now that I know a bit more about ms. The thing with ms is that it is a very personal desease and no 2 msers are the same. Yes we may all have some symptoms in common but to different degrees. After 3 MRI a lumber puncture and my past medical history were put together I got my dx, this was given by a ms specialist who told me he was sorry it took so long to get there but my symptoms are atypical! I put my life on hold for 18 months waiting for a dx, but in all honesty, the day came and went and now I have picked up where I left off. It was the worst time of my life and the fear of the unknown is almost touchable. My gp was wonderful throughout the process and he put me in touch with a lady from the ms society. She was wonderful and recommended I see a councillor. I declined but looking back at that time perhaps it would have helped not just me but my lovely husband too. Good luck Melissa, I wish you all the best and suggest that you try the new to dx and undiagnosed forum as I found that invaluable. People on there are very kind and lots are going through the process now so know exactly how you feel, Chis x

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Oops I just wanted to add that if I were you I would stick to the ms trust and the ms society websites as there is a lot of rubbish on the Internet that’s inaccurate and very frightening Chis

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It’s really good that you have critical illness cover but it could be the reason that you cannot get a difinitive diagnosis. I had a bunch of lesions on my brain and a massive one down my spine; I don’t remember there being as many as 8! Sorry I can’t be any more help. The only advice I can give is to try and look after yourself as much as you can.

Good luck

Love Wendyxx

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Hi Melissa,

I know how awful limbo can be too so I empathise completely! I had my first ‘episode’ in June 2009 which was diagnosed as clinically isolated syndrome with only one lesion on my spine. I went back to almost normal for a year and then had another episode, my neurologist was convinced it was MS (I was too, had been from the start as my Dad also has MS) but the second MRI showed no change.

From then until August 2011 I had various tests done including a lumbar puncture which was positive for oligiclonal bands, but this still wasn’t enough to diagnose MS and the neurologist wanted to change his diagnosis to ‘chronic myelitis’. I pushed for one further MRI and he luckily agreed, it showed two lesions in my brain and he was able to confirm MS in December. Since then I have started Disease Modifying Drugs (DMDs) and have just last week had my Critical Illness Claim accepted with payment coming next week

Although nobody wants to have this condition, it’s much better to have the diagnosis so that you can then potentially get access to DMDs, claim on Critical Illness if you have it, be able to get reasonable adjustments made at work and generally get access to much more support.

I know it feels like you are being left to just suffer but there are certain criteria that have to be fulfilled and sometimes it does take time for that to happen (very frustrating though!). The criteria are called the ‘McDonald criteria’ and they DON’T say that you have to have 8 lesions!! Have a look at them on this website or the MS trust website, get a little research under your belt and have a chat with your neurologist. Don’t be intimidated by him/her, it is important to get the correct diagnosis and if you are eligible for DMDs the research shows that the earlier they are started the better!

Making yourself feel better in the meantime is difficult, try not to do too much and rest as much as you can, I know it’s difficult with work, a home to run and children but your health is more important. For one thing, forget about the housework, it can wait until your feeling better!! There are drugs that can help specific symptoms such as nerve pain or spasms/cramps and your GP should be able to prescribe these for you even without a diagnosis (don’t suffer when there are things that can help, I was scared to take anything but I recently started on a drug called Gabapentin for nerve pain and it’s been brilliant!). Also, do you have access to an MS nurse? I was able to contact mine right from the start even though I wasn’t diagnosed and she was a great support.

Take care of yourself and remember that although it doesn’t feel like it at the moment if it is MS then it’s not the end of the world and you can still lead a happy and fulfilled life!

Lynn

xx

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Hi, poor you, I think your neurologist is a wally, my neuro said even if my MRI + lumber came back negative, I have ms, get back + demand answers, or get another neuro. Good luck. Julsiexx

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Just when I thought your neuro was OK, I read the thing about 8 lesions. Oh dear! He is rather out of date!

Transverse myelitis ™ is a diagnosis. It is what you should put on any forms and what you should tell anyone who asks what’s wrong with you. TM is also a very common first episode of MS, however MS is not a certainty - some people with TM do not go on to develop MS. Unfortunately, while there are some factors that increase/decrease the probability of this happening, no one can know for sure what will happen to individual patients. It’s the same with MS: it is extremely unpredictable.

Steroids can help to shorten the duration of an attack, but they are not a treatment for the actual condition, i.e. they do not change the outcome. They are also very strong drugs and should not be used too often.

As far as lesions go, the old McDonald diagnostic criteria stipulated at least 9 lesions, but the latest version states that at least 2 lesions are needed, but that these need to be in at least 2 different places in the brain & spinal cord that are typical of MS. The typical areas are the spinal cord and three areas in the brain: periventricular (next to the lakes of cerebrospinal fluid in the middle of the brain), juxtacortical (next to the cortex, the outer layer of the brain, aka the gray matter), infratentorial (basically the cerebellum, the extra wrinkly, roundish bit underneath and at the back of the largest part of the brain, and the brain stem, the bit at the top of the spinal cord that joins onto the brain). It’s not enough to have lots of lesions though, people also need to have had more than one attack: the “multiple” in MS applies to lesions and attacks. If you want to know more then you can google “Polman et al, Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. ANN NEUROL 2011;69:292–302” - this is the official paper detailing the criteria.

Sorry, I should have said: your spinal cord lesion obviously “counts” towards a diagnosis of MS, but the frontal lobe is not one of the typical brain areas so, unless it is touching the gray matter, it doesn’t actually count. Even if it is, the fact that you have only had the one attack means that the neuro can at most diagnose “probable MS” or TM which would be changed to MS when/if you had another attack.

Do you have MS? I’m afraid only time will tell, but one thing is absolutely certain: you should not waste a moment worrying about it. After all, it may not happen(!), but even if it does, it is NOT the end of the world! Life with MS can still be good.

Karen x

PS If you want to chat to others going through the same thing, check out the Before/New Diagnosis forum.

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Hi Melissa

It’s a bit like Karen said - I wonder about your neurologist!

My story is similar to Lynn (above) - tingling in the toes which spread up to my armpits, and then slowly faded. The physical tests (sensation-perception) said TM, I got a course of B12 injections (painful), the blood tests said nothing, the Lumbar Puncture said “typically MS” and an MRI showed there was one area of inflammation on the spine. One course of IV steroids improved things, but the next MRI showed three lesions instead of one - now it became a Dx of MS

You can carry on after Dx. My left leg was the weak one, and I already drove an automatic car, and I was only working part time anyway. I did one European and three US conferences after onset, drove in about a dozen different US States, and it was only when I needed a second lot of IV steroids that I decided to quit altogether.

Never mind the Dx - your body knows what it can, and cannot, do. There are aids, and coping strategies, and while the relapses are annoying (wish I had started Copaxone earlier, when I had the chance), they are not the end of everything. One thing you should watch out for is the relapses. You will know when you get one. Make a note in the diary (wall-planner, Filofax, or whatever) and when you get the second one, see if the time interval is less than two years. If it is, you do qualify for DMDs (and it really is your choice which one) and you should ask quite firmly to be prescribed. This could delay the inevitable day when you really have to give up work for quite some time.

There are lots of people on this forum who can advise you about sick-leave and getting a lighter work load; and as you get to grips with your condition you will know what questions to ask. So ask, and you will get lots of advice.

Geoff

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Hi all - hope everyone is doing ok. I could really do with some advice please… I’ve had a really up and down year and I am still no closer to any definitive answers. Still being told that I have ‘probable MS’. I have demyelinating lesions in the left frontal region, right trigonal region and in the cervical spine. Over the last 12 months Ive had two lots of intravenous steroids over 5 days which have really helped with the symptoms. About two months ago I started to suffer from really cloudy vision, it was awful - like trying to look through really dirty glasses. I failed the minimum sight requirement for driving so had my licence suspended and was told that I would be seen by the eye clinic at the hospital within 7 days. Those 7 days turned into three weeks before I was seen at the hospital, by which time my sight had significantly improved. After all the tests I had for my vision I am now told that I have mild delayed P100 latencies on both sides consistent with demyelinating optic neuropathy. What does that mean??? I am due to see the neurologist again on 12th Feb and could really do with some advice please. It has got to the stage now where I want to have MS - because hopefully then I can have the DMD’s that I have read so much about. I just feel that the consultants are just leaving me to get worse before they will stop sitting on the fence and give me the treatment I need. I am only 36 and have a young family - I just want to do and take whatever I can to try and slow down or stop what is happening to me. Why won’t the doctors or consultants commit themselves to definitively tell me the truth? From your own experiences is all this consistent with MS? Do you think this is MS? Would love to hear from you - I’m at my tethers end Thank you