newly diagonsed with MS. In denial

Question

I was just recently diagnosed with MS. I'm still in shock and going through denial over it. Is there anyway it could be something else? I know I'm just fretting and not wanting to face it. I feel healthy right now. My symptoms have been more sensory, numbness, tingling and warm sensations on the left side from the left chest to left foot. But I had a fall 3 weeks prior down the steps so I assumed it was from that. I had another attack on the right side from the right chest all the way down to the right foot. This attack was awful. It hurt so bad due to the burning. I had pulled my back prior to this episode. I assumed it was from that. I had a brain and spine scan and they found lesions. I'm just in shock. Here is my brain scan.

kwarendorf · Answer

Hi Deenie - 

Welcome to the group.  "You have MS." Is indeed a lot to digest. But as othwrs have mentioned it is not a death sentance and it is not a guerantee that you will be in a wheel chair next week. Many of us leade reasonably normal lives. I've had it for 24 years and you'd never knnow if you saw me on the street :-)

Kyle

immisceo · Answer

Just to echo what others have said, that piece of paper is NOT a diagnosis. It's a radiologist report. Regardless of if your neurologist's office sent it to your family doctor, it was not written by them. It's classic radiologist format. 

Don't put the cart before the horse. Write down your questions to your neurologist. It's not uncommon for them to recommend further testing after a period of time (3 months, 6 months, etc.) if they feel any question marks still exist. 

The first year definitely has unique challenges as we all incorporate our new reality into our daily lives, but life does go on! And usually a lot more normally than you might imagine. We get used to taking our meds, we develop ways to read our bodies, things settle down. But for now, breathe, talk to your medical team, and know that the sky may be grey for a while - it's not falling!

HVAC · Answer

It is normal to be in denial. No two cases of MS are exactly the same. The main thing with MS is dealing with change. Things can change quickly. On the other hand you may not get all the symptoms of MS so you do not need to stand around waiting for the other shoe to drop. I was diagnosed in 2009 and I have had few changes. I have not seen my MS Specialist in 3 years because nothing has changed. It turns out my MS started in 1965. They sent me to the Mayo but no one knew kids could get MS back then. I saw neurologists my whole growing up but no one explained it. All of my damage happened in childhood. I thought MS was normal because it was for me. I was lucky because I did not have to adjust to changes later in life. 

I ride horses, swim, walk my dogs. I live a normal life with MS. I use crutches sometimes but that is the only outward sign. 

Alex

sllowe · Answer

HI Deenie,

If you have not spoke with your neurologist about the report, please do so. A radiologist cannot diagnose MS. You mention you have assumed some things due to you fall, etc. Even more reason to speak with your ordering doctor, and let them make those determinations. 

More importantly, please follow the good advice above, and get a 2nd opinion, and an MS specialist if you have received a diagnosis, or if you are just that uncomfortable about what they are saying. 

It's just that important, because yes, there are other things that can cause those findings, but it's up to the professionals to put your case together.

Write down all your questions for your neurologist, and state your concerns so you can understand their determinations. If they are not clear, press for clarity.

Hope this helps.

Corriel · Answer

Hi there, sorry to hear about all that you are going through. You don't mention any discussions with a neurologist so have you been officially diagnosed or going by the radiologist's report while awaiting your neurology appointment?

There is a lot to go through upon diagnosis and your neuro or his nurse should be front and center to help you navigate everything.

Good luck and keep us posted,

Corrie

JaneyLee13 · Answer

Hi Deenie,
I think we've all been through what your going through, i got some very good advice on this forum when i was first diagnosed, it was that the first year is a roller coaster, and to be kind to yourself and give yourself as much time as you need. i am coming up to my 1 year anniversary and i think i am starting to get a real handle on accepting my diagnosis and am starting to look forward to my life again. 

Aspentoo is right, if you haven't seen an MS specialist make that your next step, it may not be news you want to hear but if they confirm your diagnoses then at least you can move forward and start to look after yourself. 

My neuro has told me that these days if MS is caught early and controlled with DMD's (disease modifying drugs) then it is highly unlikely that people will end up in a chair. Also nowadays the statistics for life span for people with MS is only a few years shorter than those without it. I know these probably won't bring you much comfort yet but hopefully one day they will. 

Best of luck
Jane

aspen2 · Answer

So sorry for your diagnosis.  It is a shock (I was just diagnosed Thursday although I've had lots of warning).  Were you diagnosed by an ms specialist?  If not, you probably want to make sure you see one.  They would be the doctor that would be most likely to find an alternate explanation, if there is one.