Leg cramps

[Trimybest]

I have a question....currently I am not diagnosed, I have a lesion on my brain that has caused numbness, headaches, ringing/buzzing in my ears, fatigue, and dizzy spells. They found 9 o-bands in my CSF, but my Nero is waiting for another confirmed attack before dxing. On the 4th of July I developed a severe cramp in my left calf that has no explanation, just came out of the blue. Tingling on the bottom of my foot, and when I stretched it up my toes would go numb. For 3 days I could not walk it was so painful.

I sent a message to my Nero, he said there are a number of explanations but wants me to get examend. He did indicate that we can move my next mri up to this month instead on September if I wanted. 3 months ago my spinal mri was clean. So I am highly doubtful that anything has changed there. I’m walking normal tonight now, still some weakness. By Wednesday for my appointment I’m sure I will be back to “normal.”

I’m still planing on going to my pcp to get examend and so this can be documents. I know this is related, I just know it! But I don’t think they will be able to label it as a new attack, which means I will not get any answers....AGAIN! What have your experiences been with a similar so situation?

[Myoak]

With what you just described you would be diagnosed with MS if recommended changes are made to diagnostic criteria, according to this article...

Recently, experts recommended changes diagnostic criteria.

Revisions to criteria used in the diagnosis of MS
https://www.msbrainhealth.org/referr...iagnosis-of-ms
28 June 2018

"Experts have recommended changes to the widely used 2010 McDonald criteria for the diagnosis of MS.1,2 The revisions, published in The Lancet Neurology, are intended to facilitate early and accurate diagnosis of MS and reduce the likelihood of misdiagnosis."

"Recent data show that the presence in the CSF (but not in the blood) of oligoclonal bands - two or more ‘bands’ of different sized antibodies – is a predictor for the risk of a second relapse in MS, after accounting for confounding factors. Therefore, the experts recommended the following: for a person who has experienced just one relapse, the presence of CSF-specific oligoclonal bands could substitute for MRI evidence of dissemination of lesions in time, allowing an MS diagnosis to be reached in some people who were not diagnosable with the 2010 McDonald criteria (Figure)."

Since you have clinical presentation, a lesion on MRI, and more than two oligoclonal bands you would be diagnosed with MS, according to these new recommendations.

You may want to print that article and talk it over with your neuro.

Best!

[Trimybest]

Criterial

With what you just described you would be diagnosed with MS if recommended changes are made to diagnostic criteria, according to this article...

Recently, experts recommended changes diagnostic criteria.

Revisions to criteria used in the diagnosis of MS
https://www.msbrainhealth.org/referr...iagnosis-of-ms
28 June 2018

"Experts have recommended changes to the widely used 2010 McDonald criteria for the diagnosis of MS.1,2 The revisions, published in The Lancet Neurology, are intended to facilitate early and accurate diagnosis of MS and reduce the likelihood of misdiagnosis."

"Recent data show that the presence in the CSF (but not in the blood) of oligoclonal bands - two or more ‘bands’ of different sized antibodies – is a predictor for the risk of a second relapse in MS, after accounting for confounding factors. Therefore, the experts recommended the following: for a person who has experienced just one relapse, the presence of CSF-specific oligoclonal bands could substitute for MRI evidence of dissemination of lesions in time, allowing an MS diagnosis to be reached in some people who were not diagnosable with the 2010 McDonald criteria (Figure)."

Since you have clinical presentation, a lesion on MRI, and more than two oligoclonal bands you would be diagnosed with MS, according to these new recommendations.

You may want to print that article and talk it over with your neuro.

Best!

myoak, I read the new criteria back in March when they found the lesion. I did a lot of reading since I knew nothing of ms. Then when I had the LP done in April and the report confirmed 9 o-bands I thought for sure he was going to dx me. So when he told me he wants to wait and see if I have another attack, I wasn’t sure how to take it. (Yay I may not have a life long disease. Great, they don’t know what’s wrong with me.) I figured since none of my related symptoms are not dibiatating, that’s why he is choosing to “wait and watch.” You are not the only person to say this to me, so it is making me want to discuss the new criteria with him and see what he says.

thank you

[Myoak]

You are welcome. Your doctor is being cautious and wanting to be certain of his diagnosis, so that is good. The last thing you would want to do is take a MS med that you didn't need!

On the other hand, if it is MS, then beginning your studies with the aim of developing a plan to combat it and live a normal a life is prudent.

Certainly, a young person just diagnosed might want to investigate HSCT. JMHO, but next on the list to consider would be Tysabri. Next would be Ocrevus and then Lemtrada. Personally, I would end the list there. The risk/reward is just too far out of balance for me on the remaining MS DMTs. However, I would consider them if none of the first 4 were possible.

I am so deeply, deeply sorry to say this my friend but if you use a strict interpretation of the new diagnostic criteria, MS does seem to appear by that standard.

Quote... “We thank Axel Petzold for highlighting the most substantial change in the 2017 McDonald criteria for multiple sclerosis compared with the 2010 criteria, namely that, in a patient with a typical clinically isolated syndrome and fulfillment of clinical or MRI criteria for dissemination in space, demonstration of CSF-specific oligoclonal bands now allows a diagnosis of multiple sclerosis to be made.”

https://www.thelancet.com/journals/l...168-6/fulltext

If the link does not work for you, you can google,

"Applying the 2017 McDonald diagnostic criteria for multiple sclerosis – Authors' reply"


Be encouraged! Huge strides are being made. You will do well and you will have a great life. There is a path forward. Be patient, keep learning, and you will be fine.