I have not been diagnosed with ms, but my doctor and a neurologist were convinced that my symptoms indicated ms last year. I wanted to write down my experiences and thought this might be a good place to air them. I dont want to sound dramatic and i am not looking for sympathy, i simply hope for some advice from those who might have experienced similar symptoms to mine. I have struggled with fatigue since i was about 19 and i seem to constantly be ill with some virus or another. I have suffered with insomnia for about 5 years and began having migraines a year ago. Early 2012 i had a problem with my back which from an mri scan of my lumbar spine was found to be a bulging disc, at the time the symptoms were severe pain and some immobility with shooting pains and numbness in my legs and feet. I had some physio and all seemed to be fine. In November 2012 I suddenly started to get numbness in my arms and legs which moved around and seemed to spread to my torso. I went to my gp and was prescribed painkiller after painkiller which did nothing then i managed to see a different gp who set up lots of blood tests and my b12 level was found to be low so i was prescribed a supplement to bring it up which it did. The pain grew to shooting pains, pins and needles, numbness and crawling sensations. I had a scary incident in a hot bath which felt freezing cold so i kept topping it up with hot water until my whole body was bright red. I went back to my new doctor when i started to be unable to feel when my bladder was full and he referred me to a neurologist. I saw the neurologist in late december 2012 and she took a full history of my symptoms and referred me for an mri which i had on 24th january 2013. This time they scanned my entire spine and brain but found nothing. My doctor had in the mean time prescribed me amitriptyline which seemed to block the pains however they made me so drowsy i struggled to get out of bed and move my legs in the morning. I took them for 3 months until me and my husband couldnt stand the strange zombie i had become any longer. This summer wasnt too bad. I managed to take on a more physical job where i am on my feet most of the time, we had a holiday or two and even got a dog. Unfortunately in the last few weeks I have started to get migraines, numbness and now shooting pains again. Plus leg and hand weakness which has meant i have fallen twice from my leg giving way and started to lose the grip in my left hand on occasion. I have also started to have problems with urinary retention and constipation. The crawling sensation seems to be reoccurring and i am not sure what to do. I went straight to my gp and told him the problems seem to be coming back and he has scheduled some further blood tests. I dont know if i can handle taking amitriptyline again as it had an adverse affect on my working life and my relationship with my husband but if the symptoms get worse again then i believe i will struggle to go to work every day and i know the wait for another neurology referral and mri scan will be long. My current gp is very nice and seems interested in getting a diagnosis whereas previous doctors just threw pain killers at me hoping it would go away. I m not sure whether to ask to see someone for a second opinion, are there gp’s with specific neurological experience? Are there different tests they can do to narrow down what could be causing my symptoms? I am 27 and the majority of the time at the moment i feel like an old lady. I get exhausted walking the dog for 10 minutes or putting washing in the machine and cant sleep at night. The shooting pains and crawling sensation have started to affect my neck and face today and yesterday at a wedding i couldnt stand for longer than about 5 minutes without one of my legs buckling. I am scared and dont know what the best course of action is. I know there are many people far worse off than I am and i hope this doesnt sound melodramatic. I am just looking for advice on what i can do next.
It took years for me to get a diagnosis and initially the various symptoms were not treated as being related to each other. I was told on the first visit to my GP about my hand being numb was because I was wearing an underwired bra. There are other neuropathic drugs which might help, Gabapentin and Pregablin are common ones. Speak to your doctor about them. as for a diagnosis you might be in limbo a while but don’t give up Ruth x
If you have been experiencing symptoms for almost 10 years (started when you were 19, and you are 27 now) it is more than likely that if the cause of the symptoms was MS, then there would be some lesions showing on MRI. (I know MS sometimes takes a while to show on tests / scans etc, and it can be difficult to find the evidence, but after ten years of the disease, one would expect lesions to show on scans). So, 8 years on from first symptoms, and there are still no lesions on brain or spine MRI, it might be less likely that you have MS? However, I have heard about ‘clinically silent MS’ (which may not show as lesions on MRI) although I don’t know much about it. There are other tests that can be done to help rule MS in or out (evoked potentials, lumbar punctur etc) so might be worth asking your GP (since you have said they are helpful) to refer you back to neuro for further tests or second opinion?
In some ways it is very good news that after almost 10 years of symptoms your MRIs have come back clear, as this means MS is much much less likely. But it does leave you firmly in limbo-land, not knowing what is going on or what can be done to help, and that is not a nice place at all. So keep pushing for support,
hope you find some answers soon xxx
Hold on in there, and hopefully you will get some answers sooner rather than later. It is so frustrating not knowing what is making you feel so rubbish. Just to quote the previous installment in this thread,… 'However, I have heard about ‘clinically silent MS’ (which may not show as lesions on MRI) although I don’t know much about it. '… From what I have read, silent MS means there are lesions visible but the person is not having any symptoms…also known as benign MS. Hope you get some answers soon. X
Hi I completely understand what your going through as I’m going through the same, for a few years I haven’t felt well dizziness, faint etc then in January this year started with right leg pain, cold sensations, tingling and was told it was a lumbar bulging disc too but having seen a pain specialist some months later was told it wasn’t, I’ve now got more symptoms in my right arm and hand and my vision is awful and painful eyes, I’ve been given amitriptaline too at night 20mg which help a little, I’m awaiting a second MRI as the first showed some scarring so they want to compare the two, so I have to wait until January to get the results now. I totally sympathise with you what your going through and know how difficult it is not knowing what’s going on, it feels like forever but. I do hope you get some answers soon, it’s always nice to talk to people with the same issues and to know I’m not going crazy, take care xx
I totally get your frustration. I too am struggling with symptoms - to the point I’m barely able to walk for 10 mins without needing to sit. Its v upsetting as the drs are trying to label with me psychosomatic symptoms! Rubbish. I was a sporty lady/jolly before all these symptoms kicked off 2 1/2 yrs ago. just out of interest have been tested for lymes? It can mimic ms symptoms - sadly the blood tests are very inaccurate - often people get tested in the UK and send bloods abroad. There is a fantastic lymes charity (lymes action) who seem v well informed and might help you get to the bottom of your symptoms. I’m sure I’ve got ms but am not ruling lymes out. I’ve had 7 mri’s (all normal - brain and spine - its important you get the whole spinal cord scanned) and am now booked in for a lumbar puncture to see if that reveals anything. In the meantime get yourself on a high dose of omega. I’ve read alot about diet and the work of Dr Swank (advises a low fat diet) and Professor Jelinek (also has ms and has written a very interesting book about how to treat ms via the diet - ie. no sat fat, high omega). He also has a v useful website - overcomingms.com. Hope this helps!