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-   -   Symptoms for almost a decade with no diagnosis (https://www.neurotalk.org/multiple-sclerosis/195418-symptoms-decade-diagnosis.html)

Snoopy 10-16-2013 06:27 PM

Quote:

Originally Posted by vs1988 (Post 1022740)
I had an MRI without contrast; if it's MS that's been causing my symptoms for all these years, would lesions show up in the scan?

Yes.

Contrast will show currently active (inflammation) lesions. If the MRI is normal it will be normal with contrast.

Mariel 10-17-2013 10:16 AM

What a crazy situation! Mine was similar back in the day, in terms of specifically neuro symptoms, but my "back in the day" was when there was no MRI yet. The main difference between you and me was that I had other symptoms too, acute abdominal pain and "obstipation", plus tachycardia (intermittent). Could those additional symptoms have been MS too? Yes to "obstipation", maybe no to ab pain, probably no to tachycardia.

Later, much later (thirty years after this began in teen years) I was dx'd by MRI and other tests such as the Visual Evoked Response. I did have brain lesions.

However, even after that I was also dx'd with Porphyria. Now it does not sound like you have porphyria if you have no abdominal pain to speak of, which is the most characteristic sign of early untreated porphyria. But a certain small minority of porphyria patients have minimal ab pain. I myself have minimal ab pain at this time, maybe because I know how to avoid the "triggers" of porphyria. The neuro symptoms you have are often present in porphyria.



I am just inserting this atypical response here to indicate another far out possibility for you. I am not an evangelist for "porphyria," just sharing my own crazy dx history.

One thing about your history which is so like mine: I too went without symptoms periodically and I too had NO diagnosis, other than "stress"--not even a migraine dx, since my eyes were not badly affected when this first began at 16, 17 years of age. But I was in acute difficulty when an attack occurred, and even though I had been a top student and athlete, getting through college was an obstacle course and, what is worse, a
situation where my family began to look at me as a failed case. I really lost a lot of love being like that. And I feel for you if the same is true for you. Poor baby!

My advise on neurologists is mixed. Perhaps some here can direct you on this better than I. I have had, in my later years, good neurologists, but they were not easily accessible unless one lived in Southern California or Oregon or Phoenix. At this time I would recommend as a great place to go, but expensive and not in your neighborhood perhaps, the Mayo Clinic of Scottsdale Arizona. I don't have a neurologist's name there, as I saw one peripherally to a cancer workup (in my old age I also have Polycythemia Vera, unrelated to the other diagnoses, a form of non-malignant cancer which raises red cells and platelets). The neuro I saw there was the best. The other neuros I saw in S Cal and Oregon are long gone to the next world, but they were geniuses, and included Dr Roy Swank, the famous MS diet doctor.
On the East coast, I recommend, from experience, Johns Hopkins in Baltimore. My hematologist there, Dr. Jerry Spivak, is one of the best in the USA, and has some neurologic know-how. But best of all he could recommend a neurologist. Getting the right one for you is obviously paramount in your case. How to find this needle in the haystack? Only through blind luck or good referrals.

vs1988 10-21-2013 02:08 PM

Does the absence of lesions on an MRI rule out MS? I just got another call from my PCP's office stating that my vitamin D levels were very low, and they suspect that that's what may be causing these neuro/muscular symptoms. She set me up with a prescription for a vitamin D supplement and wants to repeat the lab in ten weeks, and refer me to a neurologist if the symptoms are still occurring.

Snoopy 10-21-2013 04:01 PM

Quote:

Originally Posted by vs1988 (Post 1023814)
Does the absence of lesions on an MRI rule out MS?

No.

It is possible to have MS without currently showing lesions on MRI, it can take time for MS to show on MRI.

The standard protocol IF MS is suspected is to re-do MRIs about every 6 months.

Quote:

I had an appointment with my PCP's office today and saw the Nurse Practitioner. She said she didn't notice any neurological deficits during the neuro exam
Usually, someone who has MS will not have a normal neuro exam.

Quote:

my vitamin D levels were very low, and they suspect that that's what may be causing these neuro/muscular symptoms
It is possible, vs1988.

A vitamin D3 deficiency is being linked to many health issues. The only way to know if this is the case for you, is to get your D level up.

This is a link to a thread here on NeuroTalk which as a lot of very helpful information about D deficiency:
http://neurotalk.psychcentral.com/thread92116.html

NurseNancy 10-21-2013 04:35 PM

hi all...is the McDonald Criteria still relevant now? i havn't heard it in awhile.

Snoopy 10-21-2013 04:45 PM

Quote:

Originally Posted by NurseNancy (Post 1023848)
hi all...is the McDonald Criteria still relevant now? i havn't heard it in awhile.

Yes.

The criteria for diagnosing MS is the McDonald Criteria.

yeti 10-22-2013 08:03 AM

Quote:

Originally Posted by vs1988 (Post 1023814)
Does the absence of lesions on an MRI rule out MS? I just got another call from my PCP's office stating that my vitamin D levels were very low, and they suspect that that's what may be causing these neuro/muscular symptoms. She set me up with a prescription for a vitamin D supplement and wants to repeat the lab in ten weeks, and refer me to a neurologist if the symptoms are still occurring.

I have symptoms that are clearly from brain lesions, but have ALWAYS had a normal brain MRI. In fact, my diagnosis was probably missed in 2004 because I only had a brain MRI. What finally got the ball rolling for my diagnosis was a neck MRI that showed lesions.

So I've had 4 "normal" brain MRIs now over a decade (last one just a few months ago), even though I'm confirmed MS with plenty of symptoms that come from brain lesions. So, no, a normal MRI does not mean you don't have MS.

Frog42 10-22-2013 09:39 AM

I think if you don't fit their textbook definition that doctors are often confused. Sigh. :(

SallyC 10-22-2013 01:30 PM

Quote:

Originally Posted by Frog42 (Post 1023995)
I think if you don't fit their textbook definition that doctors are often confused. Sigh. :(

To say the least..:eek::rolleyes:

Mariel 10-22-2013 04:28 PM

I will need to google the "McDonald" Criteria. I think I read it a long time ago but I completely forget what it was. what is "low EDDS"? thank you, anyone who knows.
I just looked at the McDonald criteria on Wikipedia, which I guess will be good enough for starters. What impressed me about this was the movement of the lesions around the brain during monthly MRI's, and the fact that not all the lesions were periventricular, as far as I can tell. I had not seen the McDonald criteria before.
I had more lesions than this when first diagnosed. They did not move as fast as this, but they did move entirely from one side to the other over the course of several years. Because they were mostly not periventricular (located around the ventricular chasm) some doctors were not sure I had MS. These doctors thought I had to have periventricular lesions, as well as the positive optic tests and the symptoms). By the criteria I see on the McDonald, I wouldn't have had any disagreements if my tests were done now (I guess. I don't claim to be an expert on reading MRI's although I had a lot of them). Dr. Swank also gave me a positive on his test of red cell mobility when challenged by oil under a microscope. My symptoms were pretty bad and had been bad for decades, but the eye symptom which registered on a test was the one which brought on the MRI. Remember that most of my experience was before MRI's came along, although I don't know when exactly they came along, certainly not in my first years of symptoms.
Does anyone have any further thoughts about the "periventricular" criteria? Thank you!


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