Where do we go from here?

[ebrownkirkland]

Well, we've (my husband and I have) now had practically every test known to man done and we still don't have a diagnosis. I'm writing this in the hopes that someone can help us by suggesting where we should go from here. Here's the timeline of events:

1. November/December 2016: Husband notices a scotoma in his right eye comes and goes over the course of a couple of days at a time. This happens for approximately two months before finally making an appointment with a neurologist to see if what's happening is a result of silent migraines.
2. January: First appointment with neurologist, who sends him for an MRI
3. Results of MRI: Dawson's Fingers are found. Neurologist sends husband for a lumbar puncture.
4. Results of LP: high protein, one o-band found
5. Follow-up with neurologist, who sends husband to an MS specialist after diagnosing him with Clinically Isolated Syndrome
6. New neurologist diagnoses him with Radiologically Isolated Syndrome and sends him for a VEP test and bloodwork
7. Bloodwork all normal except for ANA, which is abnormal (high). VEP is normal (113 in right eye; 111 in left)
8. Husband notes other symptoms: itching that comes and goes in calves (particularly bothersome at night and can wake him from sleep); spasms in calves and in the right side of his abdomen

The new MS specialist he is seeing takes up to two weeks to get back to us with results of anything. For example, the VEP test results were available from the radiologist on Friday but we didn't get word about them from the neurologist until today, and the doctor hasn't responded to messages about other curious symptoms. It took him TWO WEEKS to get information about the lab results (bloodwork).

So... What do we do from here? Where do we go? It appears that we are currently stuck in limboland. The MS specialist he saw said he wouldn't need to see him unless the results of the VEP were abnormal, and they weren't. He said that if they were normal he would need a repeat MRI in six months (that's July). Our fear is that my husband will come up with a new more debilitating symptom than the scotoma he had in his right eye, and we have no idea when that new symptom will pop up. In the meantime, because we've had such problems getting in touch with the doctor, we have made an appointment with a different MS specialist.

Hoping someone can provide some guidance. Thanks for reading.

[Snoopy]

Hi ebrownkirkland,

From everything you have written and the testing your husband has had he does not currently meet the diagnostic criteria for Multiple Sclerosis. The Neurologist was trying to see if your husband met the criteria by the testing he ordered. MS can be difficult to diagnose, for some it takes x amount of years and others are diagnosed quickly. It is very difficult and many times impossible to receive a diagnosis of MS without meeting The Revised McDonald Criteria.

There has never been any single test, by it's self, that can give a definitive diagnosis of MS. There is also no symptom that is exclusive to MS.

Our fear is that my husband will come up with a new more debilitating symptom than the scotoma he had in his right eye, and we have no idea when that new symptom will pop up.

I would suggest that you and your husband take a step back, try to remain calm and enjoy your life. It's possible that nothing else will happen and he doesn't have MS, but if it does that's when you your husband would need to contact his Neurologist and possibly retest. If you husband has MS it will show at some point but until then there isn't anything else that can be done. Even if he was to have MS and on treatment new or more symptoms are very normal and possible, that's the reason I suggest you enjoy your life and not focus on the "what ifs.'

Information about The Revised McDonald Criteria:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084507/

[jimmylegs]

any updates on the items previously listed, in relation to normal test results on file?
(normal is a bad word to me, when it comes to nutrition blood work in particular)
http://www.thisisms.com/forum/undiagnos ... ml#p245812
given your own b12 issues, could be worth digging in a bit along such lines.

[ebrownkirkland]

Jimmylegs, all of his numbers regarding nutrition are really, really good, so I don't think that's the issue.

Snoopy, thanks for your words of wisdom. You're exactly right. We just need to enjoy our time together and, well, que sera, sera.

[jimmylegs]

i used to think that about my numbers too hopefully, someday someone with symptoms will demonstrate their excellent serum essential nutrient levels with data.