I am Stephen and my wife, joyce, has been experiencing strange symptoms for the last year.
They started with pain in her shoulder and right hip which we put down to her getting older (mid 50s) and possible trapped nerves or sciatica.
About 9/ 10 months ago she started to get what she calls fizzing in her hands and feet. These get worse when she strokes the cat, does the washing up or her hands / feet get cold. Her hands and feet also often feel colder than they should be. In addition she gets the same fizzing across her back when she has a shower. This fizzing can get intense and last for hours. The only time she hasn’t got fizzing is the few minutes after she wakes up and before she gets out of bed. She also has weakness in her left leg.
She had a MRI scan of her neck , which showed a little bit of wear and tear but nothing of concern.
She then had a MRI scan of her head as they wanted to rule out swelling of her brain. This was in January and we have just got the results. These show a change in the white matter in her brain and they believe she probably has progressive MS. She has been immediately prescribed gabapentin and told she needs to have loads of blood tests and will be referred to her local MS clinic for further monitoring and treatment. A further brain scan is planned in the future to see if there is any change from this first scan.
You can imagine how my wife feels. Scared doesn’t even come close. She has read the side effects for gabapentin and really doesn’t want to take it until it’s proven that she has MS rather than probable. She also still trying to say her shoulder and leg are trapped nerves/ sciatica.
Does she sound like she has MS or could it be something else?
Joyce is very nervous about taking the gabapentin, especially if she doesn’t have MS (as diagnosis does not seem conclusive) and might not need it.
She is having a phone consultation with her GP tomorrow for this condition. How can I best help her and what should she be asking her GP tomorrow?
Ok, now Joyce take a deep breath and calm yourself…I`ve not been on gabapentin so cant advise on that…but if you really dont want to take it then dont…I doubt you will suffer from not taking it.
There are many, many neurological conditions that mimic MS. It can take quite a while to get a diagnosis. Whatever it is, it does sound like a neuro problem.
My nerve pain is controlled with amitriptyline. I`ve been on it for 21 years! Not everyone gets on with it, but if you try it, start with a low dose and build gradually. It can make you sleepy. It helps me get good quality sleep.
Let me tell you something…there are hundreds of people, if not thousands, who after a diagnosis of MS still go on to live a good life.
Yes, things will be different, but you are still you…with a few interesting nuances!
Tip…pace your activities…rest when you need to…I have a great support network from hubby, family, friends and care workers.
Hi Steve and Joyce! We found that the scariest time is not knowing. Once you have a diagnosis, you know what you’re dealing with and there’s so much help and support available. My husband was finally diagnosed with secondary progressive MS 4 years ago, having been diagnosed with epilepsy and then a mini stroke-all signs of MS. At one point we were told it was either MND or MS. When we finally got the diagnosis, I was relieved it wasn’t MND though I was hoping for relapsing MS, Phil was devastated because he was in total denial, saying it was definitely a back problem. He has taken Gabapentin for years to great effect with no problems. I’m a glass half full girl-in fact I prefer it full and then topped up! Phil has always been a glass half empty person and MS has definitely thrown up some challenges! My best advice is, baby steps, get as much support and advice-especially from excellent forums like this! Life will be different but can be just as enjoyable and you meet some wonderful people who have walked in your shoes and know exactly what you’re going through-and, more importantly, give you tips and strategies to help you cope! Best of luck to you both-keep in touch! Love Julie and Phil xx
