Does anyone have MS or have a partner who has MS?
I am under 30 and have MRI's this week to see what has been going on with my body for the last 3 months. I have almost every symptom and they seem to be getting worse. Now that I think about it there have been so many warning signs over the years and I just thought they were normal. For example migraines without headaches (vision and speech loss), tingling in my limbs, dizziness, eye twitching, clumsiness, electric shock like feeling down my arm, unable to think of words etc.
I have done a lot of research in the last few days and it may not be a death sentence. I may go through life just like I am. One month I will be normal and the next I will have a relapse. Apparently you can recover from relapses.
Anyway. My partner has decided to come with me to get my results. I'm scared. We are getting married in less than 12 months. I'm petrified of what effect it will have on him if I am diagnosed.
I am writing in because after the MRIs I don't get the results for 2 weeks and I want advice.
Any advice will be helpful like diet/exercise/work tips. Even though a lot of you may just tell me to 'wait and see how I go' I feel like anything may help me get through the next few weeks or even help someone going through the same thing at the moment.
Feel free to share your own stories too.
4 Replies
MS is definitely NOT a death sentence. I haven't had a diagnosis, yet (have similar symptoms to you including lesions shown in an MRI but have had other testing and thus far there is not enough evidence to progress to next stage of diagnosis - lumbar puncture) but I had an uncle who had it and my (female) cousin has it. In women it is more likely to be the relapsing remitting version (RRMS) in which you can have episodes but then improve and be stable for long periods of time. My cousin has this type and been stable for around 8 years, she is taking various meds which helped immensely with the symptoms. She has gone on to have 2 children since diagnosis and works as a practice nurse for a medical centre. She gave up shift working as she was finding the fatigue too much.
Sadly my uncle did pass away around 9 years ago - he was in his 40s but had MS diagnosis for over 20 years (since he was in his teens). In men it tends to be more aggressive and they are more likely to get progressive or secondary progressive MS where it attacks and degrades and doesn't improve. He was also diagnosed in a time (mid-80s) when treatments were less advanced, there weren't the immunosuppressive drugs available for the condition when it was first diagnosed. People getting diagnosed now are on the front foot in terms of meds and treatments.
There was an article I read today about a British scientist who has possibly discovered a way to make the immune system stop attacking itself, effectively halting/curing MS and other AI conditions. I've also seen excellent results from stem cell treatments overseas which give hope also.
I hope that whatever happens you get answers to your symptoms. I just want you to know that MS is certainly not a death sentence and you could easily continue living a relatively normal life for many years to come even with a diagnosis. Good luck and much love x
My aunty was diagnosed in her early 30s. She refused to listen to drs who told her that her loss of sight and leg movement was permanent. She started a process of elimination in all aspects of her life from diet to her environment... She noticed that she lost her sight the day after she was exposed to fluorescent lighting, so now my uncle does all the grocery shopping, banking etc, and they changed external lights around their home. They moved North, (we're in sydney, they moved inland from coffs harbour) as they found when on a holiday there, she was feeling much better being out of pollution and away from the lighting in that city. Gluten creates problems with her stomach and gives her migraines, she can't even eat meat that has had a diet of grains. No dairy either... there's several veggies she can't eat, but i can't remember them. However, as restrictive as this all seems, she's found that she not only walks now, but runs. They travel around Australia several times a year, and she climbs mountains, literally rock climbing and ab sailing, four wheel driving, kayacking u name it, she's there. She's now early 50s and has had and continues to have a very full filling, physical life style. She's often the fittest and most able bodied person within a group. She works, and she is enjoying her life just as much as the next person.
Ms is definitely not a death sentence. It may take some time to work out what works for u. I would suggest doing something similar to what my aunty did. Cut everything out and then one by one, introduce foods into your diet and see how your body reacts. Good luck xox
You may want to look into Vitamin B12 deficiency and/or pernicious anaemia. Read the book 'Could it be B12'. A lot of those symptoms you have listed are often mistaken for MS when they are some times B12 deficiency/PA.
My mum was diagnosed about 15 years ago. It isn't a death sentence. If you met her you would not know anything is wrong with her she just gets very tired some days. She has relapsed a few times the worst one was when she actually lost feeling in her legs. Went straight to emergency and on medication and made a complete recovery.
Currently she isn't even on any medication and is fine and hasn't had a relapse in a long time. Does get minor symptoms still such as tingling but nothing that effects her life.