Sorry if I sound irritated/confused, but I am … any advice is appreciated.
What do you say (or do) to a MS specialist when they say “you don’t have MS, because you don’t meet the criteria” and then they read you the new diagnostic criteria bs. And YET I have worsening brain fog, worsening burning feet and hands, tinnitus, hand tremor, muscle spasms, balance issues, and what feels like an buzzing electric current running through parts of my body (head and hands). I’m so confused. Its almost as if they are treating the “diagnosis” differently than possibly having the disease. I have no idea what I would have to say for her to think “hey maybe this is MS, but he just isn’t showing any lesions”. I have had all the blood tests to rule out other possible issues. Must I really just wait for lesions to show up? WTF. I feel like saying to her “I don’t actually care about the “diagnosis”, I care about whether I have MS and whether I should be getting on something for it.” Based on her theory, someone could progress throughout their whole life, with every major symptom, and never “have” MS. Seems absolutely stupid.
***Tell me. Is there anyone on here who is being treated for MS without any lesions?
I told her Ive read numerous accounts of people without lesions being diagnosed. She resonded “Dont play Dr google…without lesions they cannot have MS” Keep in mind this a top Dr at a well-known Boston hospital. ( i should mention, he/she is very kind, just a side note)
Im lost as to how to approach this. Sure, I can seek out another Dr, but how do you get someone to take you seriously and be proactive without lesions? Do people end up hoping for a relapse AND lesions?
Are you in the UK?
if so, see your GP and explain everything you have told us.
The GP could then suggest other possible diagnoses.
A retrospective diary of your symptoms could be useful.
I hope you get answers.
Carole x
Well, one way of looking at it is that there’s a clue in the name: ‘multiple sclerosis’ means ‘many scars’ and absence thereof is suggestive of it not being MS. Scanners aren’t perfect, of course, and time is the best diagnostician, for sure, but chasing an MS dx when the scans are clear is weary work indeed. If it’s MS, you’ll know in time. That’s scant comfort, I know, but sometimes things just aren’t as clear we we would like them to be.
Alison
Hello, my lesions ‘hid’ from the scanners for many many years.
I saw 16 different neuros in as many years. My symptoms were extremely typical of PPMS from the get go!
One of those ‘wonderful’ neuros wrongly diagnosed me with HSP for a few years, until genetics testing proved him wrong.
Finally in desperation, I went to a fantastic Centre of Excellence in neurosciences, in Liverpool and yeh…guess what? I got that elusive diagnosis. I have a rare form of spinal PPMS.
No treatment after all this time and progression, but at least I know why I cant walk etc.
My lesions are on my cervical and thoracic spinal cord.
Go find a better neuro!
Boudsx
Hello
You do sound both irritated and confused. I’m not surprised. You have a lot of physical symptoms and all you want is for someone to recognise this, work out exactly what’s wrong and give you a diagnosis.
The problem is that neurologists use what’s known as the McDonald Criteria for the diagnosis of MS. This is a link to it: https://mstrust.org.uk/a-z/mcdonald-criteria If you read the different diagnoses, you’ll see that outwith lesions (or scars) somewhere in your central nervous system, you cannot be diagnosed with MS.
It doesn’t sound to me that your neurologist is doing anything wrong. You could have symptoms that to you appear to be MS, but with no evidence, she cannot diagnose MS.
I disagree with Bouds about finding a better neurologist. Perhaps you could argue for more MRI scans, more of the spine perhaps. But I think Bouds herself has said many times that she has a highly unusual type of MS. Most people with MS do have brain lesions as well as lesions only in the spinal cord.
Maybe you should be questioning what could be wrong with you if it’s not MS, rather than insisting that it is MS without clinical evidence. For example, have you heard of Functional Neurological Disorder? Have a look at: https://fndhope.org/fnd-guide/ There are other diseases and diagnoses which present in similar ways to MS, FND is just one of them.
Best of luck.
Sue
1 Like
Thanks Sue. I appreciate the thoughtful response. As heard so often, the progression and presentation of my symptoms seem to line up with what I read many other people experiencing. But yes, I will stay the course, and my pushing will be simply towards getting a next MRI a bit sooner than normally scheduled. And hope that the symptoms subside. I just hope the brain fog lifts as its very difficult to accomplish simple daily tasks.