Last reply 6 years ago
MS Symptoms ???

Hi, I’m a newbie to here. I have not been diagnosed with MS but am under investigation for the symptoms I’m getting. I have been having eye problems for awhile now but recently it’s been a lot worse. I have flashes of lights most of the time and pain across my eyes, more pain in my right eye,they are really sensitive to light and have i have trouble focusing sometimes.I went to a&e last weekend as the pain got so bad.I was referred to an ophthalmologist who says my eyes are healthy and suspect Optic neuritis. I get a weird sensation in my face, scalp and hands, a feeling like i have walked into spider webs.Very distressing at times. I get pins and needles in my right hand and severe pain in the back of my head, that seems to come on for no reason.My muscles feel like they are twitching and I feel constantly really tierd.I wake most mornings with a headache and pain in my eyes and go to bed with a burning feet sensation that is distressing.
I loose my balance alot mainly in the mornings. I have always been forgetful but it seems to be getting silly how much I’m forgetting.Concentration is hard as my mind seems to go blank.
I am waiting to see a neurologist and hope they can get to the bottom of it, I’m not working at the mo, as i feel unable to do it for the time being.I just wanted your views on my symptoms as sometimes i feel I’m going mad imagining it all! Thank you for your time. I will let you know the outcome.

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stumbler
6 years ago

Hi Char, sorry that you’ve felt the need to join us.
You’re in the right hands with a neurologist now to find out what’s going on.
It would be useful if you could make a short list of your symptoms so that the Neuro can refer to it. They’ll also do a preliminary investigation of you, e.g. how you walk and your reactions to sensory stimulation. They may arrange for other tests, e.g. an MRI scan and visual evoked potentials.
But, whilst your symptoms have brought you to an MS forum, please consider that these symptoms do go across various conditions.
For the time being, try not to worry (easier said than done, I know) as these conditions can be made worse with stress.
Take care
🙂


f3ng5hu1
6 years ago

Hi Char, welcome to the site.

I agree with Stumbler, the neurologist will be able to advise you better about this.

I am surprised that you haven’t already been submitted to hospital for tests given the fact that your ophthalmologist suspects optical neuritis.

The symptoms you describe are fairly common with ms but then pretty much most symptoms could be attributed to ms as it is a very varied condition which via the brain mechanism emulates the sort of things you describe.

It may or may not be ms but if it is, don’t panic, at least then you will know what it is and that should take the edge off a bit. It’s not knowing sometimes i think that can make things like this particularly daunting.


char
6 years ago

Thank you, i will take your advice.Thank you for your views and help on the matter. It is much appreciated 🙂


Anonymous
6 years ago

Hey Char,

I know exactly how you feel. I’m very much in the same boat with you at the moment. I am also waiting for a dx. I’ve been searching for one for a year now and have the hopes for one this year. If you have any questions or need to vent please feel free to PM me!

As both Stumbler and f3ng5hu1 said…these symptoms are very common among many illnesses and its just a matter of figuring out which one. Keep your head up and work with your doctors to figure this out. I know all of this can be overwhelming, unpleasant, and (as you said) quite unpleasant…but hang in there.


char
6 years ago

Hi Chels, thank you for your reply, kind of you to take the time to.You have been waiting a year!? blimy.I think if we knew that it is MS then we would know what we are dealing with, i find the not knowing part hard to deal with aswell.If that makes sense. I will PM you, thanks 🙂


reddread
6 years ago

Hi Char,
I’m in the exact same boat you are in. My list of symptoms is pretty similar to yours, along with numbness, perception issues, and a complete loss of stability in my right leg. I visited an neurologist today, but I have to say that I am NOT impressed with how this was handled. I was supposed to have a neurological exam, but I wasn’t even in his office for more than 5 minutes. He did only a few tests; he checked my field of vision, bonked a couple reflexes, got me to walk heel-to-toe (which I failed miserably), and incorrectly did the Babinski test (with my socks still on and used a SMOOTH object to rub the foot). After that he told me I should see a psychiatrist for anxiety/depression. The ONLY positive aspect of the appointment is that I convinced him to schedule an MRI because I didn’t feel satisfied with his “diagnosis”.

I sincerely hope that your neuro has some compassion and does a full exam before assuming you’re just a hypochondriac.


Anonymous
6 years ago

@ Char

Waiting for answers is very difficult. Over the past year and a half I’ve come to the opinion that not knowing is far worse then knowing. I will admit that when my new neuro look at me at the end of the appointment and stated that we are probably looking at MS, although I was fully expecting it, it was still a bit unnerving.

Please do feel free to PM me. I like hearing other people’s stories and experiences. Its the whole reason I joined this site.

@ reddread – After the MRI…if your still not happy, find another neurologist. My first neurologist sounds A LOT like what yours sounds like. She was supposed to be a REALLY good neurologist (the best in the area) and she completely dismissed me. Didn’t do more then a 5 minute quick neurological exam and booted me out of her office. Because of her incompetency – I spent a year getting worse and worse without any help or a dx. And because I dont have a dx but there IS something wrong with me…my GP wouldn’t even give me anything for the pain and muscle problems I have.

I’m now seeing a new neurologist (this time the head of the neuromuscular department at one of the best hospitals in my state)…and my condition is so bad that he was overwhelmed with how many problems I had. He did a VERY extensive neurological exam and found some very evident problems. So now I’m being put through all of the tests. Which is good.

If you aren’t positive that your Neuro is interested in helping you figure out what is wrong and is interested in treating you….GET A NEW ONE. Its your health and life…not theirs. Stick up for yourself.


Anonymous
6 years ago

*with how many problems I *have*


reddread
6 years ago

Glad to hear that I’m not the only one being dismissed as crazy or a hypochondriac. My original GP even flat out said “My guess is you’re a bit of a hypochondriac, just remember, as long as you know that nothing is wrong, the strange feelings should go away”… That almost floored me right there. I’m the type of person that “deals with it” for as long as possible before asking for help. I rarely go to the doctor unless i have to and there i was, 3 hours early for my emergency appointment because the only thing i could focus on was what the #$%@ was going on with my body.

So now I have to wait a month or two for an MRI, although I think I might be the one to have to harass the hospital to get one, because this neuro didn’t even look like he was going to keep the notes he was taking down. He was writing on the back of some unrelated paper, right in the center of the page, in point form, not using more than 3 words per note.

Why does it have to be so hard to get a doctor to be interested in your condition without them defaulting to the “must be something in the brain, so we can’t check” or “it’s all in your head”?


Anonymous
6 years ago

My experience is that a lot of doctors don’t seem to care as much as they should but also….There is a medical slang term called ‘Zebra’. A Zebra is a patient with a difficult to diagnose or rare disease or disorder. The reason for this slang term is this:

In medical school teachers are taught a saying: “Where you hear hoof beats – think horses not zebras”

This means that they are TAUGHT in medical school that when they have a patient who presents with symptoms – not to think of everything it could be, but to think of what is statistically most likely and go with that.
Which means that most doctors have gotten in the habit of ignoring all other possibilities but the most common ailments. So when a patient presents with symptoms and all of the statistically likely causes are ruled out – the next most likely thing in their mind is a mental problem.


Anonymous
6 years ago

*In medical school, doctors are taught a saying…


char
6 years ago

Hi Chels and Reddread,Thank you. What am awful week i’ve had. Ive had my usual symptoms but on top of those i’ve felt like i’m drunk, went out to the shops and i was not with it atall, i’m sure people thought i was drunk or on drugs. I was having trouble talking, walking and just thinking straight. I got home as soon as i could and just slept.Also I’m finding when i’m walking i feel im going to one side and i’ve started almost falling over because of it.Trip up.I’m noticing my speech is slurring abit,getting words muddled not enough for other people to notice but i am. Making me so conscious.I am having a party next weekend and i am scared as i just don’t know how i’m going to feel. Waiting for my appointment with neurologist to come through.


reddread
6 years ago

@Chels: Personally, I think that is not the best approach, in fact it seems less effective than just using the internet to figure it out. In the past 7 months, the only medical testing done on me is a standard blood test, and I think it was only done to satisfy my need for them to do something other than ask “So, what’s wrong?”


Anonymous
6 years ago

@ Reddread – What isn’t the best approach? Finding a new neurologist if you don’t like your current one? The only sad thing about going online and dx yourself is that its not an actual dx and you never really know if its the right one. Plus you can’t get treatment and help that way either.
And since that is the only testing they have done for you…it doesn’t sound like they are being helpful. I would find a new one.

I was told nothing was wrong with me and to go home. Spent a year getting worse and worse, researching online desperate to find out what is wrong. I found a new neurologist (because I demanded one) and now I am actually getting properly tested and my new neurologist is being proactive and told me that we are looking at MS as the cause of all of this.


Anonymous
6 years ago

@ char – I know the feeling! Feeling drunk (not able to walk straight or keep your balance, fuzzy thoughts, slurred speech, the works) is pretty common it seems. The only thing I haven’t experienced yet is the slurred speech.
Try not to stress out too much about it, cause that will only make things worse. Just keep remembering you have your appointment set up and you’ll start getting help soon. Plus you can always talk to everyone or someone on here to vent your frustrations.

Hang in there!!


cameron
6 years ago

I have so much sympathy with these posts about awful neurologists. The first one I saw said he suspected MS and that I should ‘go home and wait for things to happen to you’. That comment – I am convinced – brought on a relapse. But good came from it because my GP was so incensed she referred me to London, where the dx came very quickly. The posts are dead right – the neuros have the answers but if you get any kind of brush off, go elsewhere.


Anonymous
6 years ago

It never ceases to amaze me to read stories much like my own journey in getting a confirmed diagnosis from a “medical professional”. I noted that you, Reddread live in Canada but when I read your post I would have sworn you and I saw the same Neurologist ha ha… I live in Perth Western Australia. Unfortunately, depending on the type of MS you may have, an MRI may not be able to assist in confirming your diagnosis. At present there are NO diagnostic tools that can actually be done to prove you do or don’t have MS. An MRI can confirm a diagnosis IF you happen to have the right number of lesions in your brain or brain and spine and those lesions happen to be of a size large enough for the MRI to pick up. If you have PPMS your MRI may not present with lesions meeting this criteria. You can have plenty of tests to rule out alternative diagnoses which help but unfortunately having other things ruled out only fuels the opinion, held by, more than what should ever be acceptable, physicians that there is something wrong psychologically. It’s dismissive, rude and what’s even more absurd a proven “misdiagnosis” given to more individuals than I can count who actually DO have MS. I have written my “story” on my blog http://primaryprogressivems.blogspot.com.au and in one of my more recent postings entitled “I’m wearing my pouty face” I have shared a story written by a lady named Janine who’s story will make you even more furious but it’s not uncommon and as it is actually SO common in country after country I for one am at a loss to see how it is ever going to change. I sincerely hope you get the support you need and deserve from your medical system over there, just know that you are not alone 🙂


Anonymous
6 years ago

Zebra thinking. Its WRONG but doctors stick to it.


Anonymous
6 years ago

Okay @Chels just did a bit of a statistical search about how much of a “zebra” MS is vs more horse type diagnoses and read a few articles from those who are more zebra hunters and included your very insightful comments and the statistics I found on my latest blog post…. thanks for enlightening me…. I seriously had no idea that this mindset existed… incredible!!!!!


Anonymous
6 years ago

During the last year of being medically ignored I had a lot of time to research medical ailments on the internet and ran across the Zebra term and issue. Read a lot of blogs, personal experiences, and medical articles about the problem. Its a very interesting topic.

Mind linking you blog post? I’d be very interested in reading it, if thats okay.


Anonymous
6 years ago

Sorry….found your link above.

That was an amazing blog post. You’re a great writer and really highlighted the issue. I really enjoyed reading it!

The zebra problem can be quite bad. And although MS is considered a ‘common neurological disease’ it is still very difficult to find a neurologist to take you seriously and get a diagnosis. Not to mention that there are definitely rare presentations of it (like MS without lesions on MRI scans, or relapsing-progressive MS, etc) This site alone is littered with similar stories about how it took years and multiple doctors before someone finally listened.
My own story being that my GP gave up after spasticity started (my first bad symptom) and my first neuro told me flat out that I DEFINITELY did NOT have MS because my MRI scan was clean.

My new neurologist (backed up by my neurological exam) believes differently.


Anonymous
6 years ago

Thanks @Chels I so so so have had some shared experiences with you…. I’ve been frustrated, angry, astounded, totally wigged out and now I have just resigned myself to the fact that the medical community really don’t have a clue … that said, I’m very glad to have others in the MS community to commiserate with, share stories and hopefully provide some mutual encouragement with. I really hope your new neurologist supports you.


Anonymous
6 years ago

@maggie – I am very happy and appreciative to have this community as well. It has helped my outlook on this situation so very much. My partner was actually just commenting last night that this site has seem to have done some great things to my mood.

So far I love my new neurologist. He listened and is intent on helping find out whats going on. He didn’t dismiss any of my symptoms and didn’t rule out MS just because my MRI was clean.


boodle06
6 years ago

Chels… Do you think he will send you for another MRI? How long ago was your last one?


phoenixfire92
6 years ago

Wow, Im new here and reading all of this just highlights the past six years for me. I was just diagnosed officially last July but was having random symptoms since August 2006. Unfortunately I was living in a part of the world that doesnt have very good medical care but I tried my best to find out was going on. I saw so many doctors and was told I was stressed out, maybe had diabetes, and even that I was going through early menopause. I’m 29. I was having problems walking and constantly walking into walls and just thought I was clumsy. In 2010 my symptoms got so bad I couldnt walk on my own and was even visibily weaving while sitting down. An old woman who is a folk doctor saw me and said I show go get a brain scan. Thank God for her. Luckily I was able to see a neurologist who ordered an MRI with contrast on the same day and admitted me to a hospital for a week. (This only happened because in the middle east you pay for medical services before you receive them, Thank God for having money in the bank at the time.) I received steroid treament for 5 days and prednisone for a month but no diagnosis. The doctor put me on vitamin b complex, vitamin d and alpha lipoic acid but told me I would have better luck finding treatment in another country becuase he suspected ms but wasnt experienced enough in the field. At least he was honest.

The supplements helped alot and probably kept me from relapsing for a whole year but not knowing to avoid physical stress and heat I had a relapse during summer vacation. Such a drag. This disease has caused so many changes in my life but it is honestly a relief to know what is going on. MS is one of the hardest diseases to diagnose because the symptoms are so broad. At times you think you are over reacting and avoid causing drama for the people in your life. Looking back I would have kept a journal of my daily symptoms were and brought that list with me to the doctor. It helps to see the proof of what your dealing with and makes it harder for anyone to tell you its all in your head.

Finding a specialist in ms rather than a general neurologist is important but the most important thing is having a good relationship with the doctor treating you so dont be afraid to look around. In the US the National MS Society has listing of recognized specialists. I hope you have something similar or can look to the online community for help where you live.

Dont give up.


Anonymous
6 years ago

@boodle06 – he doesn’t want to send me for an MRI right now. I had one a year ago and it showed nothing. So he’s having me do a bunch of nerve conduction tests and reflexology tests and blood work…and then he will have a LP done if any of those tests come back with results. I’m guessing that if there is significant data to support an MS dx…then he’ll send me out for another MRI at some point. But right now he doesn’t think it would help.

@phoenixfire92 – Welcome to shift. I’m happy to hear you finally got your dx after all that time. Hope you’re doing well now! I’m happy I had the foresight to keep daily symptom journals for the last two relapses…its the big advice I keep hearing everyone say.

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