Multiple sclerosis

[Lostinthought...]

Hello

I think I have got early symptoms of MS, in fact I'm almost certain I do!
We all can't be imagining all these symptoms.....can we!?!
Not sure how to escape this mess anymore, this mess of feeling constantly sick. It's lucky I don't believe in a God as I would assume that I am been punished for something. Who knew life was going to be this tough.

I'd like to know if anybody else feels like me and how they're currently coping with their symptoms and feelings of uncertainty.

My symptoms:
Muscle twitches mainly in legs
Tinglyness in legs and feet
Nausea
Body aches and pains
Tirednes
Swirling tingling in stomach
Jaw pain
Pressure on top of head and forehead
Feeling doomy for no particular reason
Brain fog - can't think, concentrate, no memory, brain feels stuck and seems to coincide with pressure on head
Extreme sensitivity to smells, noise and lights
Dry mouth
General flu/sick like feeling
Moods swings
Sweating

My head pressure and brain fog meant it was quite difficult to come up with that list so am probably forgetting a lot more symptoms but you get the jist.

My body just doesn't feel well and I believe the only one that truly knows there own body is themselves.
Thank you for reading 😁

[Ange1]

Every single symptom on your list I have had also. Anxiety can cause some pretty horrible feelings x

[Lostinthought...]

Thank you for your reply Angel. I agree that anxiety can cause horrible feelings but I'm starting to think anxiety is only playing some of a role in this. I'm obviously anxious as I feel unwell everyday with a range of disturbing symptoms that are increasing in severity.
In my particular case I believe that the medical health professionals are making a error in false diagnosing anxiety. I am not anxious, I am experiencing symptoms of some neurological disorder.

[Serenity1990]

You know most of those aren't actually MS symptoms right? Especially the muscle twitches (in fact their presence is a big pointer AWAY from MS in diagnostic manuals.

Nobody's saying you're imagining your symptoms. Anxiety causes real organic changes in the nervous system when it takes root for long periods of time, that's why it's closely associated with things like BFS. The problem with HA sufferers is we tend to think we either must have disease X or be absolutely fine, we forget that there's a whole spectrum of stuff in between.

I either have, or have had, every symptom you describe. I too used to fear MS. I've had all the tests, and four different neurologists at the best teaching hospital in the country have told me I do not have MS. I do not have MS.

[Lostinthought...]

Thanks for your reply serenity. Glad to hear you have had intensive tests by the best consultants and been given the all clear.
Any forums I read I see people complaining of most of those symptoms I named. And muscle twitching and tingling definitely is a symptom?

[Serenity1990]

Tingling can be, yes. If localised, constant, etc.

To paraphrase one of the most highly respected papers on MS misdiagnosis, the presence of fasciculations should make a neurologist question the diagnosis of MS. They occur due to hyperexcitability of the peripheral nervous system; MS is caused by lesions on the central nervous system. Yes people with MS can get fasciculations, same as people with MS can have chicken soup: neither the fasciculations nor their consumption of chicken soup was caused by the MS.

I'm sorry but people on MS forums are not generally experts on MS. Probably about half have the actual illness, and the other half have never been (nor will ever be) diagnosed with it and belong on here. Or elsewhere. Believe what a doctor or neurologist has to say over what you read on there.

I'll give you an example. A lady on another forum was a nurse. She started getting fasciculations followed by tingling and cramping. She worried herself silly about MS because of the tingling and cramping, and joined up on MS forums hoping to get reassurance. People on said forums were really sympathetic, when she asked "can x, y and z be caused by MS?" they said "yes it can". Because when you ask that sort of question to a forum, you're basically asking "have you ever experienced x, y and z" to a massive subsample of individuals. Ask the same question on an AV forum, on a music forum, or even on an anxiety forum and you'll get the same response. She made good friends with lots of people who were in a similar boat.

She read up about the disease and by the time she went to see a neurologist she was a pretty convincing case of MS. Was she answering the questions in a particular way to get tests, or were the symptoms presenting in a particular way because of her fears? Who knows? Anyway, despite inconclusive tests she was tentatively diagnosed with MS.

Incorrectly.

She lived with that diagnosis for years (5-10 iirc). But her disease wasn't progressing, and the medication was doing nothing for her symptoms. When she went for a routine check-up with a new neurologist this confused him. Her neuro exam was still perfectly normal (save for brisk reflexes). He questioned her again about her symptoms and one of the main ones was the fasciculations. He knew that this was a big warning sign that she might have been misdiagnosed, so he ran an MRI again. He found the same results as the other one (I am deliberately not sharing the specifics of the results here), and he informed her that she had never had MS. She had BFS. Basically, the one thing that was seen on both MRIs was actually caused by migraine (perfectly normal).

The point here is that MS forums are no place for someone without a firm diagnosis of MS. The threads follow the same pattern: "hi my name is xxx, I have this symptom, does this ring any bells with you guys?", followed by one of the thousand readers saying "yes, I had that once", followed by everyone else informing the poster that it's a variable disease and a load of sympathy. However these sensations are not exclusive to MS.

I have Benign Fasciculation Syndrome. I am not in any way qualified to tell you what you have, but your story sounds completely identical to those on the BFS forums. You'll find similar stories on the MS forums too, but I doubt they'll be written by people with a firm MS diagnosis. Those stories begin with "One day I woke up and I couldn't feel or move my right leg, and it stayed that way for two months", or "One day I completely lost my vision in my left eye, but luckily it came back within a couple of weeks".

As for neurological symptoms, as one neurologist put it, there are only a handful of neurological symptoms (as in literally less than ten), but hundreds of neurological illnesses. They all crossover massively in terms of the list of symptoms. It's the presentation of those symptoms that allow doctors to tell the benign from the potentially pathological.

I'll leave you with this thread, because when I was going through the same stuff (and I do mean the same stuff, and more) it helped.

http://www.aboutbfs.com/forums/viewt...hp?f=8&t=16549

[Lostinthought...]

Is this story about you personally? Are you still suffering with Health Anxiety on top of BFS?
After reading up in more detail about BFS I wouldn't say it's what I have and perhaps I do not have MS either but I might.

[Emilym80]

Hi there,

My aunt has MS. Most of those symptoms aren't indicative of MS at all, but you can get ALL of them with anxiety. Her symptoms were a lot more severe than you're getting- I won't go into detail, but basically physically disabled- and her tingling was constant.

Now she's on medication and hardly (if ever) has a flare-up; she appears perfectly normal and well.

I hope that helps you somewhat

[Lostinthought...]

Thanks Emily, hope you're right. Not knowing what's wrong is just frightening. I'm glad your aunt is doing good now.

---------- Post added at 06:59 ---------- Previous post was at 06:54 ----------

Serenity, I can't understand how she was misdiagnosed. Isn't it sonething like white matter on the brain amongst other neurological symptoms that would get an Ms diagnosis. Also, one could have MRI with no change if she had the relapsing remitting type.

[Emilym80]

I've definitely had all of those symptoms from anxiety; I think that's what's wrong.

Best wishes