Hindsite is 2020

Hard questions. No easy answers.

After finally understanding MS, and being officially DX'd with it....you look back and remember this symptom "thought it was the flu" or that symptom "my legs seemed to heavy but I thought I was just tired" or something else jars your mind.
Was it the on slaught of MS? Who knows. According to the experts, we all had MS months or years before symptoms came about. Laying there dormant just waiting. Men especially tend to dimiss early symptoms. I was told that I most likely had MS
for a year or two before the symptoms and a ON attack put me down hard.

Did I suspect.....I never heard of MS. I thought is was like Parkinsons or Muscular Dys, much less knew the symptoms.

Process before DX. People on this forum and all across the country have been in what we call LIMBOLAND, for years with no
official DX. Some have so many leisons and symptoms that it is dx'd within a month. The problem lays with the process that is neccesary to give a DX and the complexity of the disease, and the added problem of "kissing cousins".

The norm would be that you have the symptoms, multiple leisons, postive lumbar puncture. The problem is that this is a norm that not many who have MS.......have. At least not at the begining.

The other problem is that doctors are as different in their knowledge of MS as the blades of grass on your lawn.

Many will suspect MS right away but will shy away from an official DX until they have ruled out every other possible look alike disease (and there are many). Autoimmune disorders are hard to pinpoint, even the ones that are not MS, much less this disease that almost everybody........has different symptoms. There is little consistency to MS. Making it very difficult to DX without the norm as I spoke about above.

In my case it was 6 months of test after test and misery, before they ruled out everything, and I lost part of my eyesight to ON, and was officially DX'd. Now a med team of 6 doctors have concluded that it is SPMS.

The sad thing is I was a lucky one. I was DX'd. There are so many that just don't know what is wrong with them. Although I read more and more that people that have been DX'd with MS for years and years have been mis-diagnoised.

As for the how young question? I have been introduced to an 6 year old and a 8 year old with confirmed DX's. The statistics say its a 20-40 disease. I got it when I was 58.

I think the 20-40 is another norm.....but this disease doesn't care about the norm.

Just my opinion, Just my thoughts

Dog

Thank you for sharing your experiences. I am new to this site and it is comforting (well, certainly not comforting, wrong choice of words) but easing in a sense to know that other people are going through the same things as my family and I and can relate and offer support. So thank you again. As I explained in an earlier post, I have many uncles and aunts, as well as my dad that suffer from MS. Now that they have been diagnosed and understand the disease, they look at me and see themselves many years ago before anyone suspected MS. I find the early stages of the disease to be so intriguing, especially that many people have had it for years before it was recognized, but simply could “make excuses” for the symptoms. I think it’s important to tell your stories… I know that it helped my family get diagnosed and on the road to treatment and understanding.
I am only 21 and seem to have textbook symptoms. I am currently seeing the same neurologist as my dad, aunts and uncles. The most embarrassing thing happened the other night and I am wondering if it has anything to do with my bizarre symptoms… I was hanging out with one of my friends whom I have not seen in ages and while we were just talking over a beer I wet myself! I apparently lost control of my bladder and didn’t realize it until he pointed it out! Needless to say I was mortified… and the night ended early. I have no idea why it happened and pray to God it never does again. Anyone ever experience something like this??

Kathl019 said...
Looking back, how young were you when you started to have MS symptoms? Did you know or suspect that they could be related to MS? How long was the process before you were dx'd?

Hi there, welcome to the forum!

I was diagnosed at age 30 a month after my left leg went numb.  I had 6 brain lesions and 2 on my spine on my MRI and was diagnosed without further testing.

The fatigue had started months before but I never thought MS, even though its in my family too.  My uncle and great aunt both had it.  I guess because my uncle got it when he was a teenager I put it out of my mind as I got older.  Other than the fatigue, I don't think I'd had any other symptoms.  It kind of came on fast and furious I guess.

I wish you the best,

Shar