2010 Revised McDonald Criteria for MS Diagnosis

[nana1968]

unfortuneately my ms neurologist is stuck on ms...he says fifty percent can present with mirror pattern o bands...he doesn't really take the rashes into effect...he is testing for clotting issues only because of d dimer...call me crazy I've heard worse but....I had aspergillius in my lungs when I was sick...part of me thinks thats what the brain lesions are..neuro aspergillius but can't get anyone to listen...that could cause all these symptoms and mirror pattern o bands..plus the rashes. I probably am wrong but I want to be sure.

[22cyclist]

Nana: I think you said you had juxtacotical lesions. Neuro apergillosis does not generally settle there. It also has a specific look different than MS. I think you doc may be right in this case.

Some MS patients do have mirror bands. Like some MS patients have no bands. It is not often, that is why it is not in the criteria. It looks like you meet the criteria on lesion load alone though.

You probably have other markers in your CSF that tip his hand in the direction of MS as well. IgG index and MBP level.

However, if you really feel uncomfortable, before starting Copaxone, consult an infections disease specialist.

Good luck. I would feel pretty good about it though from what you said in your other posts.

[nana1968]

my mbp and igg synthesis and index were all fine

[22cyclist]

my mbp and igg synthesis and index were all fine

What did you decide to do about the ID specialist? Or, did you just accept the MS diagnosis?

Best of luck
Lisa

[Nicole13]

dX too soon?

I don't meet the mcdonald criteria but I was still diagnosed. I didn't like the MS dr I was seeing. (I have another appt with her January 5) Basically she said it looked like MS, almost matches perfectly, except I don't meet the full criteria for a dx. She said that I was in the grey area, meAning something is definitely wrong but she can't dx me yet. Then, in my ignorance, I took it as an incompetent dr. Now i see it as a dr who was right, but lacks bedside manner and teaching capabilities.

I needed to establish care with another PCP anyways, and I heard about a dr who doesn't just treat the problem, she will actually try to figure out the cause of the problem. Well after an hour and a half on the first visit, looking over my test results, and doing a neuro exam, I was diagnosed with MS.

I only have one lesion on my brain. My symptoms include vision problems (flashing squiggly lines that starts in one spot in my eye then slowly takes over my whole eye. Can last anywhere from 20 minutes to hours. And will happen multipe times through out the day, have had double vision and right eye go black twice) dizziness, hearing loss ( completely gone for 3 days in April), balance problems, tripping on my feet, speech problems, pain, bladder problems, and spasticity.

My CSF wasn't normal, it had atypical cells ( rare mature lymphoid cells admix RBCs) but no O bands. however my first neuro who did the test poked me 16 times. So idk how accurate the test was.

I have had a follow-up brain MRI after a year and there were no changes. I haven't had a thoracic spine MRI and there were no follow-ups done on c-spine or lumbar.

On one hand I am glad I am not in limbo since all 5 Drs i have seen over the past year and a half (including the ER dr) basically have said I have MS but they couldn't dx yet. But on the other hand I feel guilty because technically I shouldn't have been diagnosed yet.

What is your guys input? Should I just be happy i finally got a dx and I'm not in limbo?

[22cyclist]

Were you diagnosed by a neurologist? Did they put you on a DMD?

[22cyclist]

With one objective clinical lesion that looks like MS, you technically meet the criteria if you have had 2 or more clinical attacks and a further clinical attack involving a different site.

So like if you had tingling or numbness on one side of you body at one time, that is one attack, numbness or weakness somewhere else that is two, an eye problem that is the different site.

You have met the criteria. You have a brain lesion. Don't feel guilty, but do feel lucky that they caught it early. I am sorry you have MS.

[Nicole13]

22 cyclist,
I was diagnoses by a PCP. The neuro and MS specialist both said Possible MS, just have to wait it out. They didn't actually listen to me though. It was like a few minutes in the appointment. Then they would leave. I stopped seeing the neuro because of the LP experience. The PCP actually listened to me. The funny thing is though, I didn't go for a MS dx. I went in hopes she would find something else, I didn't really care what it was I just wanted someone to do something.

Based on your exlanation, I have ha multiple attacks then. But the symptoms never go away. They bother me almost every day.

[22cyclist]

22 cyclist,
I was diagnoses by a PCP. The neuro and MS specialist both said Possible MS, just have to wait it out. They didn't actually listen to me though. It was like a few minutes in the appointment. Then they would leave. I stopped seeing the neuro because of the LP experience. The PCP actually listened to me. The funny thing is though, I didn't go for a MS dx. I went in hopes she would find something else, I didn't really care what it was I just wanted someone to do something.

Based on your exlanation, I have ha multiple attacks then. But the symptoms never go away. They bother me almost every day.

You really need to see a neurologist and get on a DMD. A PCP cannot diagnose MS. You meet the criteria. You just need a good neuro. Your symptoms that are there everyday are related to the lesion that you have. That nerve damage will not go away. Unfortunately. However, there are medications that can help it. You need to see a neurologist to help manage your symptoms.

Try contacting the NMSS to find a good neuro in your area.

Good luck.
Lisa

[Nicole13]

I have seen a neurologist and an MS specialist. Who have both said it looks like MS but have to wait to diagnose it. I am afraid to go to another neuro because I don't want my diagnosis to be revoked and be back in limbo land. I haven't had the greatest experience with neuros and I have finally found a dr that listens. I say this out of frustration of my situation, not to argue with you. I appreciate your input!

[22cyclist]

I have seen a neurologist and an MS specialist. Who have both said it looks like MS but have to wait to diagnose it. I am afraid to go to another neuro because I don't want my diagnosis to be revoked and be back in limbo land. I haven't had the greatest experience with neuros and I have finally found a dr that listens. I say this out of frustration of my situation, not to argue with you. I appreciate your input!

I understand, but if you have MS, you need treatment, or will at some point, and only a neurologist can order a DMD. You have to see one at some point.

[Nicole13]

She put me on low dose naltrexone and we are trying that first. Then I think we were going to talk about the DMDs.

[22cyclist]

She put me on low dose naltrexone and we are trying that first. Then I think we were going to talk about the DMDs.

OK, the LDN she can order but the other DMDs she cannot.
Best of luck.

[HellsBells1]

I feel I more than meet criteria, but am afraid of no dx

I have struggled for some time with getting doctors to listen to me, and have also moved out of country, back to country, out of province, etc. and have struggled with continuity of care. I have a question: Does the same doctor need to specifically see each clinical manifestation, or will they take your word for it when getting your history?

My Findings from MRI:
Findings: …"Within the left frontal lobe there is a punctate focus of increased T2 signal measuring 3 mm. There are also 3 or 4 tiny punctate foci of increased T2 signal in the periventricular white matter of the left frontal lobe. There is a cluster of oval punctate foci of increased T2 signal within the left parietal deep white matter measuring up to 3 mm in maximal dimension. No significant abnormal signal is identified within the corpus callosum nor within the posterior fossa nor brainstem. The basal ganglia are unremarkable."…

Impression: An acute cranial abnormality is not identified. No basal ganglia lesions are seen. There are punctate foci of high T2 signal within the white matter as described above. These are nonspecific. These may relate to microvascular ischemic change. However, other aetiologies such as vasculitis or demyelination cannot be excluded. If there is clinical concern regarding demyelination then neurology consultation is recommended and followup MRI may be warranted"

MRI was on Tesla 3. Three years ago, I had MRI of brain on a Tesla 1.5 which I never saw the scans nor report, but docs say was all clear. No contrast used on either one. Clinical reason for MRI this time was sudden onset movement disorder - i.e. Myoclonic Jerking in my back - ongoing now for 6 weeks

Part of my history includes double-vision 3 years ago with muscle twitching and severe calf spasms, and fasciculations, and electric shock pains throughout legs and gut.

Also, diagnosed foot drop when I was 25, in England, but before tests could be done, moved back to Canada. Foot drop lasted in excess of 6 months.

Various periods (many, many) of spasms, electrical shock pains, various sensory sx (burning, cold, wet, shock, tingling).

3-4 episodes of numbness in hands and arms that would last for months (but would not be all day).

Double-voiding of bladder - started approx. 6 years ago, and has continued since.

Dx with IBS, but have periods of being absolutely fine. Currently cannot eliminate fully, or easily, even though stool is soft.

Sexual disfunction for 6+ years (no sensation, hypersensitivity, no libido, painful or irritating sensation to simple touch)

And now, accompanying this movement disorder, lots of all-over twitching, spasms, cramps, zaps, tingles, pins & needles.

I go for EEG, VEP, and SEP this week, and then will see my neuro after results are back. He has eliminated many other auto-immune conditions via labwork (Lupus, Sjogrens, etc.). The only lab that came back was my C-Reactive Protein was 3.9 (which I understand is high).

IMHO I have more than met the criteria for a diagnosis of MS, but keep being told it's in my head, or I don't have MS. So now I am scared to actually see the neuro in case he tells me the same thing! Then they drop you without any further investigation as to what is causing the problems. My PCP is 100% unsympathetic (read: 100% pathetic). In your humble opinion, have I met the criteria for a dx, or what else is needed. Have never had an LP, nor MRI of spinal cord. Would not look forward to LP, so can they diagnose based on the above history and the lesions found on my recent MRI?

Frank and honest opinions from knowledgable members very much appreciated.

[22cyclist]

It looks like since you have nonspecific lesions an LP would be a good idea at this point. Since your MRI suggested demyleniation, a positive LP would give you a diagnosis.

Good luck!

Take care
Lisa