My name is Andrea and I am 27 years old. I want to share my story and see if someone can give me any advice.
Last December when I was on holidays in my home country (Spain) I started to feel something weird on my right hand side of the body, like if something was wrong, I don’t know how to explain it, I was very weak and specially my hand was numb and I couldn’t even brush my teeth, when I had to walk I was leaning to the right hand side and I couldn’t stand for too long, a lot of fatigue as well…
I went to emergencies and they run a CT and apparently everything was ok but they told me to go to my GP if it lasted more than 3 days…so after a week with the same symptoms I went to the GP and he interrogated me and I told him that I had a similar ‘incident’ last year when I woke up and I couldn’t feel one side of my body for 1 minute(at that time I went to emergencies as well and they told me that it would probably be stressed related) so he told me to do the brain and spine MRI, as well as blood tests…apparently I have very low folic acid levels and a lot of inflammation.
I got the results and my GP told me that they suggest MS, but that I needed to see the neurologist so he can fully check all the results…
I went to the Neurologist last Thursday and he told me that I will have to do a lumbar punction and that they have to discard some other similar symptoms conditions…
He just called me today and he told me that he looked all the results specially the brain MRI and that effectively almost 99% I have MS and that I needed to se the MS team at my nearest hospital and they will tell me everything and probably do the lumbar punction and start to decide a treatment.
This is all new for me, I am scared…specially for everything related to my professional career, last week I cried but now I think I am more positive after reading some stories.
So if anyone wants to share some advice or opinions, I would really appreciate it, I really need to know experience from people who have the condition.
I think this is a great support and I hope you didn’t get bored reading all that long text…
Hi Andrea, I am new to the forum (just joined yesterday, in fact). I am still at the pre-diagnosis stage but am finding this forum very helpful. I hope you get onto the right treatment shortly and that your symptoms will settle down. In one way I’m sure it was a shock to finally get the diagnosis confirmed, but as you say, you can now start to move forward with life and start to deal with it. Best wishes
Hi Andrea. So ok…if it does turn out to be MS, you need to know which type it is. Finding this out will determine what if any DMD`s might help…this stands for disease modifying drugs. There are lots available in UK…don’t know about Spain, but I would expect at least some are. There are several types of MS, which vary in progression and severity. But even then, there are massive variations in each type. Plus no 2 people with MS go through exactly the same symptoms ad patterns. So let your doctors do their work and try to take it all as calmly as possible. I know getting such a diagnosis is hard, but there is a good life still to be had ahead of you. Always take the time to get good quality rest and accept help when it is offered. You can do this Andrea…be kind to yourself. xxx
Hi!
Thank you very much for your support!
I am grateful because everything is going very quickly with the doctors and then I would get a treatment that suits best for me. At least now I know, better than being without knowing…
Welcome to the forum and I hope you are ok and dealing fine in the stage that you are.
Hi!
Thanks a lot for all the advice and support!! it is really helpful.
And you are right, I need to be more patience and wait until I talk about everything with the doctors.
Some wise words from Poll. Your post was no way long
Don’t despair if you do get a diagnosis there are still good times ahead. I am slightly older 53 and was diagnosed with RRMS relapsing remitting MS in 2010. I am still working just dropped down from 5 days a week to 3 days - not my choice I could work 5 if I had to. I still regularly go to the gym for 40mins on cardio machines on a good day.
I would say to keep all your doctors letters. Any doctor appointment write down the questions you want to ask and write down the doctors answers.
Is your folic acid being supplemented and have you had your vitamin D checked as this can often be low in MS? Do you live in Spain? Oh just reread your post and you said you were holidaying in your home country of Spain. So do you live in the UK? Sorry to sound nosy. If you do have a look at NICE guidelines for MS as this is what the doctors in UK should follow. Sorry if I am giving you too much information.
Just take it step by step and focus on YOUR issues, not what other people with MS have. You may have to make a few changes to your private life over the next few years as new problems crop up, but then again, you might stay as you are now. I’ve been dealing with this for 40 years, and I only recently got bad enough to have to stop working.
I still live alone and do for myself. I just don’t have the energy to get myself to work and put in even a half day any more. There may eventually be things that you can no longer do, but this isn’t a reflection of you; it’s just the nature of the beast. Hold your head high and try to focus on the good things in life.