This Is MS Multiple Sclerosis Knowledge & Support Community

How long did it take you to be diagnosed with MS, from the time you started experiencing symptoms leading you to seek medical attention to the time you were diagnosed and started treatment?

How many tests and doctors appointments did you have to have before a diagnosis was made?

And once treatment commenced, how long did it take to evaluate whether the chosen treatment was effective for you?

Q1 years and years
Q2 Heaps and heaps

Q3 There is only one question to keep in your mind. "Is this person helping me?" Treatments are so varied that there is no right answer. Whatever treatment you are steered towards google FDA+"the treatment" and learn how to read the note. Print it out and highlight the words you don't understand and start looking them up. There is a massive amount of self education in this process. Hopefully, this site helps with that. Beware anyone offering you a magic bullet. If it is MS, then it is multifactorial and symptoms appear uncorrelated. Once you start to understand the lingo patterns begin to show themselves and you begin to have intelligent conversations.

After 24 years, I've tried most things. I don't take any blockbuster MS medications, pain killers or antidepressants. They are standard treatments but many of us don't use them. I've had several big attacks but, even now, you wouldn't pick there is anything wrong. There's more than one way to skin a cat!

Regards and good luck.

1. 2 months. started digging deeper when taking b12 didn't 100% resolve my previously existing reversible symptoms. had an accident towards the end of the second month which kicked everything into high gear.

2. bloodwork, MRI brain and spine, visual evoked potentials, nerve conductivity, lumbar puncture, all consistent with ms. dx within a couple weeks of accident. there was time pressure to get it all done bc i was supposed to be starting a year long international exchange. had to postpone in part because i could not get travel insurance without stable health for three months.

3. no mainstream treatment to date. major lifestyle revisions.

- 3 months
- MRI, Myelogram, EEG, Bloodwork, x-rays, Lumbar Puncture. 2 Drs. (PCP, Neurologist)
- Have never used MS treatments. There were none when I was diagnosed.

My earliest symptoms were very mild, just some numbness in my left thumb and forefinger. I went to my doctor about it because I thought it might be just a pinched nerve in my neck which could be corrected. My doc said let's just keep an eye on it. If it gets worse come back. So 2 years later it was spreading to other fingers. So my doc sent me to a neurologist. He sent me for an MRI of the brain which revealed MS lesions.

I never started treatment. After reading about the DMDs I decided to start the Swank diet instead. BTW since that time it has been determined that I have the primary progressive type of MS which does not respond to the DMDs.

David1949 wrote:My earliest symptoms were very mild, just some numbness in my left thumb and forefinger. I went to my doctor about it because I thought it might be just a pinched nerve in my neck which could be corrected. My doc said let's just keep an eye on it. If it gets worse come back. So 2 years later it was spreading to other fingers. So my doc sent me to a neurologist. He sent me for an MRI of the brain which revealed MS lesions.

I never started treatment. After reading about the DMDs I decided to start the Swank diet instead. BTW since that time, it has been determined that I have the primary progressive type of MS which does not respond to the DMDs.

Your origin story is similar to mine. My right leg went painfully numb while I was driving. At roughly the same time I had a fall carrying a hot water heater. Shortly after that, I thought I threw my back out sleeping on the couch. I could barely stand straight up. The bone cruncher worked that out for me. I still had a hard time with numbness. I had to watch where I put my feet because I could not sense where my right leg was. I fell and tripped a lot. Fast forward 2 years. I still have numbness and have to have some level of thought when I walk or I weave like I am drunk. I still pay attention to stairs. I have since started taking karate partly because I wanted to and partly for the additional movement exercise. In December of last year I finally went to the doctor for what I thought was a pinched nerve or bulged disk or something, and after a variety of tests I received my diagnosis at the end of this past February. I have yet to start treatment beyond Vitamin B, D and fish oil. I will be starting soon though.

At first, I was in denial, which had no effect. It could have been revealed sooner, possibly.

These days, some people care more about my SSDI money than my personal wishes, and that bugs me.

In July I relocate to Albuquerque and the move excites me. Things have not gone well here in IL, so a fresh start brings possibilities.

I hope to do my best with what I receive.

Q1...About three months from first symptom (tingling extremities), 1.5 months after optic neuritis and about one month after one side went numb. About two weeks of the last month was waiting for spinal tap results.

My symptoms were out of the text book on MS. We agreed that I passed the "duck test" for MS about 2 months after first symptoms.

Q2....Two opthamologist visits, three primary care visits, and a neuro visit.

Q3...16 months have passed since official dx. Started Tecfidera as fast as I could get the stuff after dx. One year MRI showed no new lesions or activity. Very slight worsening of tingling extremities, and no relapses. Staying the Tecfidera course.

1. 6 years. I was dxd after second relapse. First one was forgotten about - I had moved so the records were not on file at my GP and the relapse was nothing like the first. So it didn't ring any bells for me.

2. Over the course of 6 years, I lost count. But they didn't know what they were looking for.

3. By the time of the dx I was too late for meds.