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Anonymous
Odd symptoms but it is MS?

Hi there,

Im looking for advice. I live in a very small town and access to health care is difficult at best. I've had some odd symptoms over the last 24 months, and doctors are now starting to ask about MS, but from what I've read my symptoms are too variable, and I'm hoping for an opinion.

Last winter I was sick for several months with diarrhea, fatigue that was crippling, and chest pain that felt like I was being punched in the upper ribs, and also like a very nasty stitch in my left side like I had run a marathon - not a muscle pain, it didn't get worse when I moved, but almost seemed worse when I was still. I also had headaches or face skin pain above my right eyebrow that would only last about 10 seconds, but like a very painful stabbing. Iwas told I had an active Eppstein Barr Infection, which at 32 is kind of rare. The rib pain and stitches and headaches went away.

In June after a few days of similar very short stabbing pains in my brow, I was lying in bed and woke up to an insanely painful stabbing/burning in my right eyebrow. Then a burning travelled across the right side of my cheek, and a few minutes later both my legs went full pins and needles. I couldn't feel most of my right cheek. I did the stroke test and because I could talk and raise both my arms, i dismissed the symptoms. I went to the clinic a day later because my face was still numb. They sent me to the hospital and did a number of tests, including MRI, for a stroke but everything came back negative. The neurologist suggested it could be a type of complex migraine. My face was numb and tingly for several months and my smile slightly droopy. The numbness nearly cleared up and in October i started getting some stabbing headaches and pains around my right eye brow and cheek bone again, and the burning tingly feeling showed up again. It maybe lasted for 10 days.

Everything was peachy until I got a very bad cold in January. My stabbing pains on the right side of my face returned, with worse pain and new areas going numb and the old area going fully tingly and numb again. That lasted about a week. The same week as the headaches started, the same stitch feeling in my back started and lasted for a few weeks. My legs also started to tingle, and what felt like clicking or buzzing down the insides of both legs from my groin around my heels and bottoms of my feet. At first I dismissed it because I had loaded up in sleeping supplements and cold pills, and then because I wasnt sleeping. It wasnt constant at first, I noticed it a few times on the couch and in bed but now it has been quite constant for a month. It seems my feet are always tingly or feel wet when I have shoes on. The upper parts of my legs tingle sometimes but it seems to really vary, and the clicking or crawling seems to be especially bad at night. I also have terrible memory issues, things that I have a hard time excusing as absent mindedness like fully losing important work things, going to the same wrong cupboard 4 times in a row, fully forgetting important conversations. It's made social events difficult as I feel like I'm always asking the same question.

Over the last month I have also had two days of bladder issues, like an incredibly urgency to pee, even though I literally just got off the toilet. Such an urgency that I haven't been able to hold it but at least nothing's there because I was just on the toilet 2 minutes ago. I have had this bladder issue many times in the past few years but always just dismiss it as some other issue, like because I drank beers, didn't drink enough water, sex, etc... but it doesnt seem ever like a bladder infection as it comes and goes and theres no burning or other symptoms of an infection.

I also have a history of bad chest pains, where it hurts to breathe and I think I'm having a heart attack. Have had to pull that car over a few times, and nearly dialed 999. I've never told any doctor about those chest pains or the bladder issue.

I went to see a GP as the legs are very bothersome and I don't sleep much. I told her about the recurrent face tingles, numbness, stabbing face pains and She immediately mentioned MS but my earlier MRI for stroke came back normal. I've had most other MS mimics eliminated except lyme, fibro, or other odd ones. There no family history of MS and my symptoms seems too variable from what I've read. Stabbing face pains are short lived, leg tingling comes and goes, bladder issues only last a few hours or days at most, chest pains are very short lived. I guess because the symptoms dont seem to have the same duration, from what I've read, it diesnt sound like MS. also, I feel like they would have noticed lesions on my stroke MRI, if they were there.

Just wondering if anyone with MS has a lot of variation in their symptoms. And if the chest pains and bladder issues that I've kept from the GP are worth mentioning.

Hi To answer the last question yes MS is full of different symptoms for different people, I am beening investigated for a year now and have a whole set of different symptoms than you.
The fact that you haven't told the doctor about your chest pains and bladder issues is important as they can be classed as symptoms for Ms. I too have not told the doctor about some things that happen to me during my appointment but I didn't know why I was there or what they were looking for, this came later when the letter arrived and I did a Dr Google bit and boy that was scary.
To get back to you they say on here that only a neurologist can diogenes Ms and there are many illnesses that it could be and that is why they have so many tests, to rule out other illnesses.
Did you just have a head MRI or have the spine and head as they are looking for white matter changes which form in your spine and brain.
A lot of people here will tell you how they were diognosed and what symptoms they had and they were all different Mine are double vision and pain to name a few. It sounds if your doctor is on the ball but the next time you see the doctor tell him about your chest pain and bladder problems.
It takes time to find out because there are so many things to rule out, plus the appointments take time I told my optitions this time last year about my double vision and I still have to have a MRI before I see the neurologist in April, hopefully I will know what I have but I am not holding my breath whether it is MS or something else nasty. Sorry to ramble I hope I have answered some questions. Good luck Kay

I have MS

Hello

The problem with MS is that very many symptoms can be ascribed to the disease, but many are also shared with other diagnoses. 

Personally I’ve never tended to have symptoms come and go so quickly. In general, I’ve had relapses where the same symptom stays for weeks at a minimum, or months, before remitting. Or that have either never remitted at all, or only partially. But my experience is not necessarily going to be the same for everyone. 

In fact no one’s experience is going to be exactly the same as anyone else’s. We might often share something like an electric shock type sensation on bending the neck forwards (known as Lhermitte’s sign), but then all the other symptoms I have will perhaps be different to the next person. Some people get optic neuritis and others don’t. Many people experience pain and spasms, but not everyone. 

Googling symptoms isn’t the best idea. You need to remember that a doctor looks at the symptoms a person presents with and tries to work out what is causing them, rather than trying to rule a specific disease in or out. 

If you think your symptoms have a neurological cause, see if your GP will refer you to a neurologist. If your GP on the other hand thinks your symptoms are unlikely to be neurological in origin, ask what they think could be the cause, and if necessary, get a referral elsewhere. 

I can’t say that any demyelinating lesions would have been seen when you had the MRI before, as Kay said, you probably only had a brain MRI when the hospital were checking for stroke. Plus, MS lesions sometimes show up better with a contrast dye. So I wouldn’t say it’s completely impossible, but maybe unlikely that it’s MS. You won’t know until you’ve seen a doctor and had your present symptoms checked out. 

Best of luck. 

Sue