Diagnosing Multiple Sclerosis: Steps to Take if You Suspect MS

I'm so sorry that it is taking so long to get to the bottom of things. I'm curious if you have had a second opinion from a neurologist who specializes in MS, or if you have had an MRI.

The only test that ever clearly showed my MS is the MRI. Everything else was clear multiple times. It took a trip to Johns Hopkins Hospital in Baltimore to find a doctor who had experience with MS.

I hope you find some answers soon. Please come back and let us know how you're doing. I wish you all the best.

Thanks for your kind reply. My family doctor ruled out a stroke and diabetes and checked my folic acid and B12 (They were great). I have seen a neurologist who has experience with MS. Have had an EEG, EMG, and MRI. The only thing that showed up was atrophy of the cerebellum. The neurologist didn't even comment on  it, but my family doctor told me that it is just a normal result of aging (I'm 51). Is that true? I have read some things that indicate that it could be a sign of MS---or some other disease.

Guess at this point I just wait, as I don't have money for all the tests, etc.

Am wondering, however: What is the average time that MS patients usually have to wait for a definite diagnosis?

I'm curious... were there any actual lesions on the MRI? If not, that's a good sign. Have you had a spinal tap?

I don't know the average length of time for diagnosis, but many people wait years. I was very fortunate that I received a diagnosis after six months. I think it was because my symptoms presented in such a powerful way that doctors paid attention.

I understand about not having money for additional tests. My insurance (individual) makes additional tests something to avoid.

My advice would be to keep checking in with your neurologist often -- especially when symptoms appear.

Keep in touch!

I'm so sorry for what you and your mother are experiencing. Unfortunately, MS can be extremely difficult to diagnose, especially if you have the misfortune to have a skeptical doctor. That's why many of us go through several docs before getting the answers we seek.

MRI seems to be one of the best tools for diagnosis because they can clearly show lesions in the brain or spine.

Since she already has an appointment with a specialist, I would suggest that you do this:

* keep a daily diary of ALL symptoms, no matter how small or insignificant they seem

* gather ALL your previous test results, health history, medications, and physican contact info for the specialist

* prepare a list of questions that you want to ask the specialist so that you don't fail to ask in the heat of the moment

* DON'T allow yourself to be rushed during your appointment -- be firm in your quest for answers

In the meantime, if any symptom becomes severe, don't hesitate to go to an emergency room. Some symptoms of multiple sclerosis can mimic stroke or other health risks, and you don't want to dismiss the warning signs.

It looks like you're already doing your homework on MS. You might want to familiarize yourself with the various medications available to treat relapsing/remitting MS, as well as medications to treat symptoms.

Lastly, don't assume it IS MS. I don't know all the tests that have previously been run, but there are several other chronic illness which have almost identical symptoms. MS is a diagnosis of elimination. Specialists usually run blood tests that can rule out many other diseases.

Prepare yourself for repetition -- MRI, spinal tap, evoked potentials, and other tests may have to be re-run.

If you do get a diagnosis, you may want to contact the National Multiple Sclerosis Society and look into support groups in your area.

Please come back and let us know how you're doing, either by commenting, or sending me a private message. I know what a difficult time this is for both of you, and I hope to have been of some help.

Kindest Regards,

Mandy