When did you know something was wrong? What was your first MS symptom?

[Jacqueline]

Good question…hard to describe it to be honest…It was something to do with my lower stomach, it was as if it had dropped and, when on the occasion this happened it literally affected me from walking, maybe it had something more to do with my brain than it did with my legs and feet…as I said, even to this day, not a sensation I would be able to make any sense from…Of course there were other strange occurrences…but these often came with gaps before it happened again…or one or two seemed to be a ” one off.. ”

I am not saying this was my first noticable MS of ” when did you know something was wrong ” other strange things before this had started to happen to me…but the above occurrence did prevent me from walking…

I remember having a cup of coffee in a large department, we went there to bide our time before having our eyes tested just a short distance away…Of course I needed the loo before and after, then once down the escalator and at the entrance to the store, I needed the loo again but I just knew I couldn’t walk this short distance, how crazy was that…Anyway somehow I continued to the eye test but was absolutely bursting by now, and no loo in the store…yet I couldn’t get myself up and about when I was told where there was the nearest food venue loo…I needed help in getting myself to walk to it, I was walking for dear life along the sides of the other shop buildings, something was holding me back from walking amongst other shoppers, I just could not walk in the centre amongst crowd or other shoppers…

[Luisa Sutherland]

When I was 12, I started getting tingly patches in my skin, nothing to see but it was sore and came and went for no apparent reason. GP didn’t investigate it. When I was 16, my mother was diagnosed with MS, and I realised that that was probably what was wrong with me too. But I wasn’t taken seriously until I was 28 and went blind in one eye (optic neuritis, which has been a common symptom, in varying degrees of severity since).

[ed-tobias]

I couldn’t squeeze the toothpaste with my left hand. My wife also pointed out that I was getting tired much sooner than normal when I was skiing.

[Debi Wilson]

Wow, Jackie that sounds like it was an awful outing to the  department store!  I hope all ended well!

Ah yes,  fatigue, that was an early symptom for me also!

Thanks for sharing Jackie and Ed!

 

[Debi Wilson]

Thank-you for sharing your story, Luisa!
MS is such a complicated disease, isn’t?! It can be so frustrating to know something is wrong, yet, the Docters are so baffled!

[Phyllis]

My first symptom was a slip and fall that caused me to break my right foot. I fell again 4 years later when my leg “gave way a second time” and broke the same foot again.

Despite reporting these two falls to my Mayo Clinic PCP along with numbness, tingling, fatigue and electric shock sensations in my neck, I was not correctly diagnosed until more than 4 years from the first fall.

Only after refusing to accept his latest misdiagnosis of depression did my PCP order a MRI and spinal tap.  So many years of frustration and countless medical tests.

[Debi Wilson]

That sounds so frustrating and familiar Phyllis! I don’t understand why Doctors don’t  consider MS as option sooner in the  diagnosis process. Thank-you for sharing your experience!

[Jacqueline]

Phyllis…

…this is one of the most frustrating that the so called medics – our GPs take so long in diagnosing, they dont listen to what we continually keep telling them the signs they dont pick up on, but all they do is send you for various tests so as to just rule this one in or to rule it out, then they move on to the lengthy wait to send you for the next test, ( I am in UK, the so called NHS ) which is slow, slow, slow, lengthy, and lengthy..) …They obviously looked at my body size, at the time being overweight even done testing for Diabetes… sent me for knee -hip testing, hernia X Ray, tested for thyroid, tested for leg – ankle ( EMG ) if I have the correct term…I had mentioned so many strange things that all of a sudden were or had happened to me, you would think they would have all added up to ring alarm bells with them, and to think, hey, this could be something serious, all they do is rule this and that out before sending you to see a Consultant for an MRI testing…now if only they had done that first….all those wasted months…Its as if they have a written plan – guide that the medics have to follow before getting to the nitty gritty…Oh and not forgetting my three months wait when one GP referred me to the physio, at least at my second appointment she ( the Physiotherapist ) picked up on ” could it be MS ” she signed me off after 20 minutes of my one hour second appointment…a whole three months wasted…Sorry but I just get so angry with our NHS system…not the Drs or Nurses fault they are dedicated just our failing NHS…people are dying waiting for appointments – treatment – surgery – beds…

Jackie…

[Deleted User]

Hi team.

When I turned 50, I had this overwhelming sense of dread come over me and it wasn’t about age, it was about awful things to come.  Many strange and weird things happened to me all at the same time back in 2012.

Before I knew what I had, I started falling over alot after a few wines, which never happens to me, and during the day, I would say to people, there’s something wrong with my leg, I can’t walk right.  After a year and a half of seeing professionals and xrays and MRI.  I was told I had PPMS. I said, WHAT KNOW!!! what is that and can it be fixed?  Nope, no treatment, ya just progess to a walker so you dont fall over.

6 years on now, and I have had to, with great difficulty come to terms with this.  It’s day by day. Oh and I have been sober since 2014.

 

Jilly

[steve]

I have a number of  the symptoms described for MS but not in a as severe a way as have some of the contributors I’ve come across on this and other websites. I have only been experiencing the symptoms for about 3 years and I understand the onset of more severe forms of MS is gradual in many cases (I’m 58).

In order of severity, my symptoms are:
increased clumsiness (repeatedly misjudging the same gap and hitting the door jamb or spilling food and drink)

increased difficulty swallowing.  I often have tablets dissolving in my throat for several minutes.

burning sensation in forearm lasting for a day or two

sudden pain in forehead and sometimes leg like getting hit with an airgun pellet, which fades quite quickly

flickering sensation in the right eye with some blurring

yesterday, for the first time, I had very severe pain in my thumb joint and this morning I was awoken by the pain having spread to my forearm. all that pain has since subsided.
I also had very stiff and painful knee joint this a.m. which went away when I started moving around.

cognitive issues (particularly in comparing data in spreadsheets which I didn’t previously have problems with).

I have had quite  a few unrelated health issues recently and I do intend to get tested as soon as I am clear of these (I have an operation in two days time) but I wondered if my symptoms are similar to those experienced by others?

I’d be very grateful for any views.  I am well aware that compared to the majority of users of this site, my symptoms are relatively trivial but I am doing my best to find out as much as possible before yet another trip to the GP or hospital.

Thank you,

Steve

[Ann M]

I was always tired.  I was diagnosed with Lyme Disease so I attributed a lot to that, the tiredness, the aches and pains the clumsiness etc. Years later, after I was supposedly clear of the Lyme and that was past, I had numbness in my face and my regular Dr sent me to a neurologist that did testing and spinal tap, and they diagnosed MS.

I have a question for everyone…bad spinal tap? I now have a lump on my spine where tap was done, the lump was small for years, now larger and has not changed appearance or size for years, it’s been over 10 years, any problems due to that?

Thanks in advance.

 

 

 

[Dan Madden]

Steve, I had a hard time reading your info because if the control language that accompanied it, so sorry if this is a dumb question: Are you undiagnosed?

Dan

[Ann M]

I believe the Lyme Disease triggered the MS.

[Sharity M]

I haven’t been diagnosed with MS. The docs diagnosed my symptoms as fibromyalgia, but none have ever been able to explain the intense all over body itching I’ve had for 8 years. In fact, googling about the itching is what brought me here. It’s like what I’d imagine body lice to feel like. Also, I can’t count the times that I’ve Involuntarily hit myself in the face with my phone, cig, remote, etc., or thrown these items across the room. The electrical-like jerk that I get that happens in a split-second and leaves me wondering if maybe I just dozed off to sleep for a second. What really started to concern me was forgetting simple words. I’m well-read, love books, and for me to forget what the burners on the stove were called, really threw me for a loop. Does any of this sound familiar to anyone or am I being a hypochondriac

 

[ed-tobias]

Sharity,

There are a lot of symptoms of other illnesses that are similar to some of those with MS, and vice-versa. Some people feel itching though I’ve never heard it described as severe as what you’re saying you feel. The jerking and throwing things does NOT sound like MS to me. Forgetting words DOES. I’m not a medical professional and, I’m afraid, I can’t suggest a diagnose any better than they have.

I hope others here may be able to be of more help.

Ed

[Dan Madden]

Sharity–I’m undiagnosed. MRI’s of brain and thoracic spine both negative. In the last year, I’ve developed a numb left achilles tendon and foot; also nystagmus, diagnosed a month ago….things skip around in my vision. I don’t have diabetes. I have some of your symptoms:  itching (left quad only), jerking (getting much worse), forgetting words. I was talking to a friend about a famous athlete and forgot his name mid-sentence. Your jerking is an exact description of mine. Mine first manifested about 20 years ago and involved my left hand while carrying a coffee cup. Without active concentration I will spill the coffee. This “monitoring” is not required by a healthy nervous system. Now I get minor jerking elsewhere (shoulders, back). Lying on my side and supporting my head with my neck muscles while reading is no longer an option, as the more interesting the book, the less neck muscle monitoring I will do, so my head suddenly drops on a regular basis.  What I’m pretty sure is happening is that the common positions we hold our body in are now requiring  concentration to maintain. Another symptom I just realize I have is that I’m becoming too wordy.