I feel a bit of a fraud posting on an MS forum as I am nowhere near a diagnosis. However I have been suffering from very odd symptoms recently and have now received a referral to a neurologist.
I am currently off work as the symptoms are so debilitating, however equally they are so difficult to explain.
I have a constant ‘tickling’ type sensation in my hands and feet. Almost like they are ultra sensitive. They do feel weak too. My doctor has said that my reflexes are very heightened and after she has tested them today I feel really ‘edgy and twitchy’. It not painful so to speak just really agitating. I am also extremely tired all of the time despite a good nights sleep.
I am a mother of three and and finishing a teaching degree. Lots of people just say its because I’m tired and stressed. But this doesn’t feel like anything I have experienced before.
If anyone can shed any light I would be extremely grateful.
This - or some variation on it - is probably the commonest question we get.
However, I’m really sorry, but there’s no way of telling whether your symptoms could be due to MS. Only a neurologist can find out that - and sometimes only with great difficulty. So it’s good that you’ve been referred to one, but MS is notoriously difficult to diagnose. It’s also what’s known as a “diagnosis of exclusion”, which means there’s no 100% reliable yes or no test for it. Instead, it’s what’s left when all other possible suspects have been ruled out. In the case of MS, there are at least 100 other diseases and conditions that can produce similar symptoms (and MS itself does not have a standard set of symptoms that everyone always has), so that’s a lot of ruling out to do!
I know it’s easier said than done, but try to cross your bridges as you come to them, and not jump straight to worst case scenarios. As you say yourself, you are nowhere near an MS diagnosis. It might still turn out to be a fairly benign and easily fixable thing.
Have you already been tested for vitamin deficiencies?
Hi not sure if I am using this appropriately but would appreciate anyone responding with their thoughts.
In Dec 2014 I started with double vision and not being able to distinquish words in the appropriate order to loss of vision. Which resulted in being admitted for steroid treatment and slow restoration of my eye sight to just being a shaky eye.
Since then my symptoms have progressed to:
pins and needles in my hands, feet and face
dizziness
sickness
Extreme fatigue to the levels that I have never experienced previously
A migraine which I have now had for a year
Joint stiffness - in knees, hips, elbows, wrists, ankles and neck etc and recently fingers.
Minimal sleep
Unable to hold a thought or memory for more than a few minutes constantly repeating myself etc
Chest pains
To now top it all off with joint stiffness is now a sharp prodding pain in these areas that when it happens brings me out in a hot sweat.
Not at all pleasant, undiagnosed as “query ms” does any of this ring true to anyone are they looking in the right direction?
Very unhappy and depressed is not a word I use lightly but have on a bad day with pain bouts of depression and to top it off I look in the mirror and the old me seems to have disappeared I seem to be a the shell only of my previously happy confident self.
Yes vitamin deficiencies are most commonly detected using blood tests - in fact, I’m not sure there’s any other way. So it’s probable the tests you’ve already had included some vitamin levels - although they probably only tested the most common and likely ones - not anything rare or obscure.
Vitamin D and Vitamin B12 are common ones to look out for, in anyone presenting with MS-like symptoms. Although, paradoxically, people with MS are often quite low in these as well. However, it’s possible for deficiency to be the sole cause of the problem, without necessarily suggesting the patient (also) has MS.
Although you have unintentionally joined someone else’s conversation, you may find it helpful to look at the answers I’ve already given to Catherine, above.
MS is notoriously difficult to diagnose, and it’s not possible, simply from reading a list of symptoms, to rate how likely it is that a person has it. There are over 100 conditions that have at least some symptoms in common, so a symptom list proves very little.
If MS is being theorised as a possible explanation, you have listed nothing that makes that theory odd or unreasonable, but equally nothing that can prove it correct.
All you can do is accept that as the working theory for now, and only time will tell if it is correct. Just as it’s very hard to prove MS, it’s also pretty hard to disprove it, as there’s no test you can have that shows you definitely don’t have it, any more than that you do.
The only way they’d prove you didn’t have it was to find something else they definitely can prove.
It’s a long and difficult process of elimination, as there are many other possibilities to examine.
Looking at MS isn’t unreasonable, but doesn’t mean that’s what it will definitely turn out to be.