Forum

Scared

I've been having some pretty painful, uncomfortable, annoying and varying symptoms for quite some time so feeling quite frustrated now. I'm a 23 year old woman and had my first child in July 2009. A couple of months later in October I started getting unexplained tingling in my feet and hands. It was just annoying rather than painful and after about 7 weeks it stopped so I didn't know what to make of it. A couple of months later in February 2010 this tingling came back but it was coupled with shooting pains down my arms. It was still just annoying rather than painful and I also had suffered from a bad back for several years so thought it was probably related to that. I've never known what caused my back ache and was told by the doctor I was too young for a bad back and it would get better itself so was just waiting it out. After 5 weeks it went so I thought nothing of it again. 2 months later this came back but then I experienced electric shock feelings in both legs and down my arms. My legs were feeling stiff all the time and I found it hard to get around because I was so uncomfortable and exhausted despite not over exherting myself. I've always been an active person walking everywhere so it was strange that short distances were too much for me. I also started experiencing muscle twitches in my hands and my calves which lasted for several minutes and I would get them several times a day. I also felt quite dizzy with everything spinning around me. I was stumbling a lot and noticed I dragged my left foot a bit if I had been walking for longer than 10 minutes. I also had several incidents where my left leg went weak and I had to grab hold of my pram to stop myself falling.

I booked an appointment with the GP and was given an appointment with a neurologist in June 2010. After being examined and having the various tests to check my reflexes and walking I was told there was definitely stiffness in my left leg and something was going on so I was getting booked in for an mri and also have my blood tested. I asked if she had any idea of what it could be and was told probable M.S due to my symptoms and the fact my granddad also has it. 

I had the MRI in August 2010 and the results came back inconclusive. Nothing showed up on the MRI but apparently the images were not very clear so it was regarded as inconclusive. My bloods also came back fine. The neurologist wanted me to be admitted in to hospital so they could do more tests including a lumbar puncture and other scans. I didn't have this done. I have the biggest phobia of needles to the point I have been suffering from this mystery illness for so long without a diagnosis and no treatment. I recently had my second baby and enjoyed a clear up of symptoms throughout the pregnancy but since she turned 4 weeks all my symptoms have returned. I've had burning pains in my arms and legs constantly for the past 3 and a half weeks. I'm having twitches in my face and my left cheek feels partially numb. I've struggled to use my hands and can't grip things very well. My hands, feet, leg and upper back keeps twitching as well. I've had pains in my chest (tightening and a spasm pain) but don't know whether this is related . Is there any possibilty of getting a diagnosis without this lumbar puncture? I'm terrified of something happening to me because I have a small child and a baby but that fear doesn't over-ride my fear of needles. Can my symptoms be treated if nothing else? I've contacted my GP and being referred back to the neurologist but I know I'll probably just endure my symptoms again rather than go through getting a diagnosis because I'm too afraid of the tests involved.

Surely if the images weren’t very clear on mri they could offer you another one? I don’t know but if it were me that’s what I would be asking for. Big hug cos it sounds like you’re having areally tough time sarah x

I just wish I wasn't so afraid. I've even had both of my children at home because I'm that afraid of hospitals and needles. I would actually have to be on death's door to consent to anything involving a needle. I wasn't always this way though. When I was younger needles didn't bother me. I then had a couple of painful blood test experiences where they've missed or gone through the vein resulting in swelling and bruising. I seem to be extra sensitive to pain as well so whenever I've needed a blood test it hurt quite a bit.  I don't mind if I never get a firm diagnosis but I just want my symptoms treated so it's more bareable.

Hi Anon,

It absolutely is possible to get diagnosed without a lumbar puncture - I did!

I think almost all neuros still prefer it, but the diagnostic criteria don't require it.  I am diagnosed on MRI evidence and symptoms alone.

My neuro did want to do an LP, but I stood my ground and declined - and yes, I got diagnosed anyway.

The only downside, I would say, is that you might have to wait longer, because to diagnose without the corroborating evidence of a lumbar puncture, they will probably want two MRIs, at least six months apart, showing that new lesions have formed.

Having said that, a lumbar puncture is not 100% conclusive anyway.  One of the factors that put me off having one was not just the unpleasantness of the procedure, but that it might not necessarily show it, even if I did have MS.  So worst case was I would go through it, but still be no closer to diagnosis.  I really couldn't see the point, unless I would end up with firm answers.

The only other thing I'd say was I was a BUPA patient at the time (although I had exactly the same neuro I now have on the NHS).  I do think, when you're a paying customer, you do get a little bit more control and flexibility, and there is not so much insistence that you have an unwanted procedure, just because "we always do it like that".  But the NHS don't have to perform a LP to diagnose, any more than the private sector does.  NICE guidelines in fact suggest it should be only used where sufficient evidence cannot be gleaned by other means.  Now that high quality imaging is (in most cases) available, the need for LP should be declining.

Tina

You also do not need to get a firm dx to get treatment. There are many meds available which your GP can prescribe to treat the symptoms you are suffering.

Please do not suffer in silence, ask your GP for something to help. It may be that you need neuropathic painkillers to ease your pain not conventional painkillers like ibuprofen,cocodamol etc.

Please ask for more help,

Hope you get some relief soon,

Teresa xx

Thank you so much for your replies. Frequently I find myself thinking everything I'm feeling is all in my head because I have no firm diagnosis so try to forget the pain hoping it isn't really there and will end shortly but everyday that gnawing pain returns. It tends to be in the evening that it's more painful and getting to sleep is really hard but when I wake up it seems to have died down a bit only for it to return just as painful within a couple of hours. My main issue at the moment is that I was symptom free throughout most of my pregnancy and then within a few weeks of my daughter being born it came back. At first it started off as a muscle twitch in my hand and for several days it was just an annoying twitch which would move to various places and then the rest of the symptoms I was experiencing hit me. I'm quite worried that I'll start experiencing worse symptoms or my arm or leg will go weak whilst I'm carrying my 7 week old so I've stopped carrying her around as much just in case. If I was offered an MRI with contrast would it be beneficial to consent to this? I'm really scared about having it done with contrast because of the needle involvement but my last MRI came back clear although blurry (I was twitching and shaking through it which I think was the cause.) but perhaps nothing showed up because a contrast wasn't used. Is there anything that can be given to keep me still also because I don't want to go through the ordeal of another MRI with contrast again because I wasn't able to stay still for the MRI.

Hi

I think you can be given a sedative so that you stay very calm and dopey and then you will stay still. Your GP may need to prescribe this for you to take with you.

If and that is an if,you are dx with MS, it is common for the symptoms to settle during pregnancy and appear again after the baby is born.

Hth

Teresa xx

Hello, and welcome to the site happy2

 

As Tina says, it is possible to get diagnosed with a lumbar puncture especially if the MRI is conclusive. (In fact, a lumbar puncture isn't needed at all if you have a history of attacks and you have at least two lesions in the "right" places on your MRI.)

 

So, I would say that the very first thing you need to do is to go and see an MS specialist (find the name of one by using the "Near me" function on this website) and get a new MRI. Contrast helps to show newly forming lesions that aren't big enough to show up on non-contrast MRI, but it does not show up older lesions at all because of the type of scan that is used. So, your neuro may be OK with you having the scan without contrast - it gives more information, but it is in no way essential. If he/she believes that it's necessary to have contrast, then please consider getting a sedative to help (as Teresa said) - it won't interfere with the scan results, and it will mean that you probably won't even notice the needle. You really don't need contrast though, if the previous attacks have left their mark.

 

You can definitely get help with your symptoms. Some GPs are reluctant to prescribe meds without the approval of a neuro, but they can so please try your GP again.

 

Please don't be scared of seeing the neuro. I'm sure they will work with you re your needle phobia.

Let us know how you get on.

Karen x