I’m 22 years old and I was diagnosed with MS three weeks ago. I’ve had periodic symptoms and relapses for 3-4 years, but everyone (including me) thought that I was hypohondriac, anxious or projecting my mothers MS symptoms. I’m concerned because all these years I ignored all come-and-go symptoms. They appeared once a year for several weeks and gone. Symptoms that brought me to neurologist were burning feet, sphincter problems, numbness in right side of face, foot drop, balance problems, trouble walking… I’ve done head and neck MRI which showed both active and old lesions. Neurologist was worried that I won’t recover completely even if I receive IV steroids because I was waiting too long to actually seek help. He was worried that nerve damage may be permanent because of late reporting. I received pulse therapy and recovered which is really good. The only symptom that is left is mild numbness in soles and sometimes I have this feeling of belt around my stomach. I’m still on Prednisone, so I hope that will be gone too. I had lumbar puncture 5 days ago, so I’m waiting for results that should confirm my diagnosis.
My biggest concern is: what’s next? I know how MS looks like because my mother has it too, and she is a good example how I should NOT cope with this illness. I read somewhere that if you have sphincter or motoric problems during relapses, it’s a bad sign and now I’m so scared even if I’m feeling good right now. I even started cutting off dairy products, processed food, etc. I’m actually really optimistic but soooo scared at the same time. My brain is going to explode.
I would be very thankful if someone has similar experiences to share. Any advice, cooking recipe, diet suggestion is welcome.
My relapses have never had a thing to do with how I am afterwards, although some of the things pop up every now and then. In 2007, I spent several months unable to walk without assistance. After that time period was up, I was my normal self until another bad relapse 18 months ago.
I also had serious vision problems during that old relapse, and then nothing after it. The only thing you can be sure of is that your MS is not going to be like anyone else’s. If you’re lucky, you’ll be able to see a pattern and plan your life around that.
Four years isn’t really that long a time to wait before going on DMT’s, so I wouldn’t worry about that part of it. Work with your neurologist to figure out which one would be best for you, and then give it a try. You may not recover completely, but then again, you might. You’ve been living with it for this long, so keep on living!
great post and great point.
A diagnosis actually changes nothing, well the only thing it does change is we get taken more seriously by medical team and offered help i suppose although even pre diagnosis i always had good support from my doctors.
I am sorry that things are moving in an MS dx direction.
What is past is past, and I think there can be a lot of head-in-sand wishful thinking around in a family with a parent with MS: no one wants to allow themselves to think that a child might get it too. But looking back never helped anyone yet, and you are right in turning your attention to next steps.
It seems to me that the big next step for you is getting on a disease modifying drug (DMD) that will get on top of MS and minimise the number and severity of relapses. Steroids damp things down, but they don’t do anything about the disease process itself: that is what DMDs are for, and if you do get the dx you expect, am sure that this is what your neurologist will want to talk to you about next. I do not know how long your mother has had MS, but the world will certainly have changed for the better since then in terms of the effective drugs that are available.
As you say, our parents are useful models for our own behaviour, whether that model is a positive or a negative one!
Great move, cutting out processed rubbish from your diet. There is just no down-side to doing that. Personally, I find dairy an excellent source of nutrition, and it is thoroughly proper, real, whole food, so I am a bit worried about you depriving your body of such good nutrition unless you have an allergy or obvious sensitivity to it.
Good luck with it all.