I know that there is something going on with me. Everyone around me wants to believe that it is all related to anxiety, but I know that it isn’t. I’ve got a bunch of weird symptoms, and it’s hard to know what is related and what isn’t. I am having twitching in various parts of my body, tingling sensations, weight loss, bruising, dry cough, skin issues, and others.
I find that it must be more than just a coincidence that I start having symptoms, have an MRI that shows lesions in my brain similar to those found in MS, but it’s all just “anxiety”?!?
I’ve had 2 neurologists and a neuro-physiatrist tell me that I don’t present with the typical history or symptoms of MS, although one did say that he still suspected MS nonetheless (this was before I had the CSF test that came back negative). All three have also told me that I definitely don’t have ALS, which has been my biggest fear. Bloodwork looking for lyme disease, B12 deficiency, lupus, sjorgren syndrome, sarcoidosis, anti-NMO antibodies has apparently come back negative. 2 EMG tests have been done since June.
My neurologist said she would call me as soon as my CSF results came in, because she knows I am anxious. But instead, her secretary called and booked an appointment to see me in 2 weeks to discuss the results. My family doctor knows the results are negative, and thinks all my symptoms are stress-related, so has not made an effort to explore other avenues. In the meantime, I feel like my symptoms are getting worse and I worry that it’s something else. I feel like I can’t talk to anybody, including my family and husband, because they all dismiss what I am saying - especially now that the CSF came back negative. I’m feeling alone and depressed and scared.
Oh dear…making everything down to anxiety CAN`T be right and you know that!
Somebody once told me that once the medics get wind of anxiety, they blame everything on it.
But what can you do now it`s already in the mix?
Of course we feel some degree of anxiety when things are going on unexplained…we`re only human afterall!
I dunno what to say to you. except to offer my empathy and support.
I had wondered about maybe you should go private. But with 3 neuro bods already telling you it isnt MS, would there be any point?
I took ages to get a diagnosis myself …years…and then it was 10 years later that my PPMS label was changed to HSP…hereditary spatic paraplegia…and a recent test for it came back negative.
Drives you bonkers, it realloy does hun!
I hope someone else can give you a better reply than mine.
sorry but i have to disagree. it depends on the patient and the gp.
i have had ms 12yrs. a period of anxiety earlier this year-treated with diazepam and counselling.
at further gp appts it has not been raised simply because we both appreciate it was an issue but now its not.
your situation is stressful and there is no easy simple answer but medics deal in facts and they seem to be trying to do that-various tests/scans etc. diagnosis is far from easy. it does take time (and stress!)
To me, it sounds like there is a real question about whether or not you have MS, irrespective of having ‘anxiety’ on your record. Although you have lesions which could be in places typical of MS, the neurologists don’t think your history and symptoms are typical of MS and added to this, your CSF shows that you don’t have O bands.
It does seem that you could do with an appointment tomorrow to discuss the whole picture with a neurologist. At least it’s only two weeks (I do realise that two weeks feels like it might as well be two months, it’s not as urgent as you feel you need).
Has your GP actually said s/he believes it’s stress related? Or is that something that you think because of a comment maybe that has been made that of course you are feeling stressed by the investigations?
Equally, your family and friends are probably doing what most people have experienced when they are being tested for MS (or any other neurological answer to your symptoms). Ie, they are saying ‘well maybe it’s not MS!’ Or ‘well maybe you should relax about it, it might get better if you didn’t worry!’ When you know there is something wrong. And want to shout and scream. And be given the understanding that you deserve.
Perhaps (as you have maybe already done), you need to write down exactly what has happened and when. Think about symptoms that have come and gone fleetingly. Write down what symptoms have stayed with you and what has improved, perhaps has left some deficits and what has totally remitted.
Then when you see the neurologist, you will have all the details to hand. You can discuss what the hell is wrong. Your neurological exam may not be typical of MS, but if they don’t think it’s MS, then what is it? And how can you have MS type lesions unless it is MS?
In the meantime, try to relax about this feeling you have that everyone is downplaying your symptoms. It’s bloody crap having this weight hanging over you, even without feeling as though you are all alone with it. Keep talking to us, we do get it.
ms pre diagnosis or after then stress is high-of course it is. but life is stressful generally so other issues, ms or otherwise shouldnt be hidden or ignored under a stress label.
i am afraid its all down to luck-which i have said elsewhere. relationship between gp and you should be equal-u need each other after all!
