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How to ask the doctor if it's MS

How did u all end up seeing neuro n being tested for MS.

Did u just go to the doc with a symptom list n they said it might be MS u should see a neuro?

Did you mention that your worried about MS n want to be referred?

Or Did they just dismiss your worries n neither of u mentioned MS n u had to keep going back loads before they would refer you?

thanks

Hi Pink princess

For me, I woke up one morning with a stiff right arm, these progessed through the day to it going numb. This lasted for about three weeks in total. I never went to the doctor for a week with this complaint as normally he would just dismiss anything I had going on with me health wise.

It was only when I went to A&E and was then referred to a stroke clinic when people started to take me seriously. The stroke doctor arranged an MRI scan and some lesions showed up on it. From there I was referred to a neuro who then spent a whole year carrying out tests to be sure I had MS before finally telling me I do have it.

Previous to the arm going numb, had quite a few incidents over the years which I can put down to MS, but whenever I went to the doctor he dismissed everything and pretty much prescribed a paracetamol - LOL. Be prepared to be fobbed off, it happens, you have to demand treatment and asked to be investigated. If you have a symptom list then I would be taking that to see the neuro. It depends on your relationship with your GP though I guess.

Have you considered a private referral? I had one recently and it cost £240. In hindsight, I wish I done this earlier as it took months before I saw a neuro on the NHS.

Best of luck.

For me I went to the docs with lots of symptoms and a suspicion as I know what it’s like (dad and older brother have Ms).

i didn’t tell the doc this until he said to me I think it could be Ms. I was lucky to get a doctor like that. But there no reason why you can’t request to see a neuro

mick

I kept going to my GP over a three year period with various symptoms. Eventually it was me who asked the question ‘do you think this could be MS’ he replied, ‘I don’t think so because it mostly affects women’ - I am male.

He did however refer me to neuro. I had MRI in June, results are leisions in the correct places to satisfy McDonald criteria (periventricular and juxtacortical). Next neuro app should have been three weeks ago, but it was cancelled. My GP had to chase it up and it is now mid October.

Be certain of one thing… they don’t rush anything.

Good luck.

I have a neuro for a another condition. I told him my new symptoms and assumed/ hoped I wouldnt have to wait long to find out what was wrong as I was already under his care. I was wrong. A year & 3 months later Im still waiting to find out. He is taking the 'watch & wait approach. It angers me sometimes knowing that I have a neuro doc I see 6th monthly yet I still dont have answers and struggling with the symptoms…maybe I should push more instead of waiting for my review appointments to come through!!

After many years of ignoring symptoms and hoping it was just a trapped nerve or sore ribs, I got my second bout of optic neuritis in May. MRI followed, then neurologist. He tested all my reflexes etc and said “what do you think you have?” I replied “MS” he said “yes, definitely” and that he could of diagnosed it without the MRI (which showed lots of little white spots consistent with dymylination)!!!. I had very weak legs at this point which were spasaming quite badly, as well as an intention tremor and issues with my bladder and bowels. As these are not recovering, though my eyesight has, he also explained I am likely tipping into SPMS. The optoneurolugist disagrees though and wants me to take DMDs.

My GP never mentioned MS, though I could tell by his face it was, especially as I was once taken into hospital for urine retention when in early pregnancy, 7 or so years ago. He immediately said he would refer me to a neurologist. I don’t think they like to mention it until they are positive it’s MS.

You must mention your concerns to the GP though. I never did and have probably missed out on DMDs that could of delayed my progression. On the other hand though, I got to live a more normal life without worry about the future in this time. If it’s worrying you, you need to tell them x keep a symptom diary, which I have since read, is very good advice. You could always ask for a referral if one is not offered. Best of luck,

stacey x x

I went to my GP two years ago with various symptoms among which dizziness,fatigue, word mixing, poor memory and clumsiness were my main worries. I was advised to keep a symptom diary. I went back two or three times, had a battery of blood tests and was referred. My GP thought it was M.E. The neuro waved that away and was certain of FND but admitted I had Chronic Fatigue Syndrome and that would also be a treatment path if the MRI came back clear, which it did. I’ve forgotten exactly how it was worded but I was asked what I thought it could be and the differential was between FND and MS. A few months ago I developed involuntary movements and more recently, ‘possible optic neuritis’ (but I had to ask the optician if it might be! She looked it up in a book and agreed that I have most of the symptoms). So, I’ve been referred back to the neurologist and will outright ask to be tested further for MS.

I went to the GP with various symptoms, she did a battery of blood tests then referred me to the physios in case I had a trapped nerve ( some trapped nerve that would have been!). They took a history over the phone on the Friday afternoon, saw me at 8.30am on the Monday as an amergency appointment ( saw a specialist neuro physio ) and, after seeing me, they phoned my GP the same day to say that I should see a neuro as soon as possible. That is how I got to see a neuro.

I was going to my gp for a year about my problems was eyes first then knees giving way he just blamed my weight even though I lost 3 stone I was getting nowhere so changed gps went with problems worse being loss of balance bloating etc he ordered bloods said he’s referring me to hospital I asked who he said neurologist.

He didn’t mention Ms but he knew it was suspected ms as I was referred to a Ms specialist who told me directly Ms or artharitis in the neck he ran bloods first and said he will order a mri I had that done then followed by other tests VEP and LP.

I was diagnosed 3 weeks ago put on steroids and go back in November.

Like some of the others I’d been to my GP with odd symptoms over several years. Unexplained falls and fatigue, the latter we put down to shift work. Then I got double vision, but my GP was still operating a “let’s wait and see” policy. By the time he referred me to an ophthalmologist it had sorted itself out. Only when I began to have problems walking, and even then only after the second visit to the surgery about that did he refer me to a neurologist. If your GP will credit you with knowing your own body maybe you could ask him to refer you to a neurologist.

The symptoms of what turned out to be my first relapse rang Central Nervous System alarm bells with the GP as soon as she examined me and she referred me to the neurologist right away.

Alison

Pinkprincess, why don’t you ask him/her if they have considered MS. Are you worried he might think you are self diagnosing and disapprove?

Jan x

thanks for all your replies.

I’m actually seeing my doc tomo going to mention the fatigue, muscle weakness n the numb pins n needles, n start with just that rather than a huge list.

When I first got ill a few years back I’d just moved to a new area n saw a doc with my list, n he said stop googling things this week it could say your ill with something n next wk could be cancer. He told me to forget about being ill n go n live my life.

I think since then going in n suggesting a illness to them kind of scares me. I know that propably sound a bit silly, but I was so ill n got made to feel like I was stupid n cried my eyes out in the car after.

But il try tomo x

Hi PP,

Best of luck tomorrow hun. Only you know your body, so please don’t get too disheartened if you don’t get the response you’re hoping for, as many of us have been where you are now.

Something to add to your list (if you have problems with it) is if you lose your balance in the dark/low light situations. It can indicate neurological damage, and is very easy for a GP to test for as all you have to do is stand with your feet together and close your eyes.

I was told that all my (ever increasing) symptoms were down to anxiety, and then ME/CFS for 8 years, and finally went to see a neuro privately. It was quite dear (£240 for 1st appt, £120 thereafter), and like Number08, I wish I’d done it sooner, but I thought I’d need a GP referral (not always the case).

Mags :slight_smile: x

How did you get on, Pinkprincess?

The appointment was a nightmare, didn’t even get to ask a single question as she just kept going on and on about comparing herself to me. I just asked about my blood results n then was going to go on to my symptoms, but she looked at my list of meds n then wouldn’t stop talking about How I should lose weight, exercise more n stop acting like a 70 yr old and then I will be fine. As she hurts when she doesn’t exercise for a while and I must be the same. We all ach and hurt as we get older so it must be that im 33. My back hurts because I must be picking things up wrong, nothing to do with the 2 car crashes iv had. And she hurt her back in a car crash but then went skiing and her back is fine now. She also told me if I wanted to have a baby then I can’t be thinking I’m ill, I will need to have lots of energy etc, like she does.

Didn’t Mention 1 single symptom, so I’m going to have to go n see another doc n start all over again.

Big hugs princess. Definitely get yourself in with another doctor and make them listen to you!. That’s a complete lack of care that the doctor has shown there by refusing to listen to you and your health problems. It’s hard I know but get yourself in with a different doctor and remind them that you’re there for a reason and need answers to your questions. Don’t let em fob you off lass. Keep smiling and your chin up . Mick

Just had a flashback. 1st gp I saw was similar, was only when I tripped & fell again for (11th time in 6yrs) I went to a different gp in the practice, who agreed Something definitely not right, she referred me to local hospital who did mri (Along with lots & lots of other tests). MRI showed lesions on brain & spine Have now been referred to neurologist, so still waiting for diagnosis. Hope you manage to get some sense soon, I remember how I felt when First gp waved me out of office like I was wasting her time. Take care

Sorry, just realised this did not answer all the question. Saw 1st gp nov last year, 2nd in feb Hospital april/may, mri results end of may, even though through all this time I suspected Ms it was not mentioned until mri results, consultant started explaining about demylenation And I asked outright if they were talking about ms. Was told results were highly suggestive Of ms but only neuro can dx. See neuro next month (done me homework -he specialises in ms)

My doc was same kept telling me to lose weight even though I did anyway after going to him for a year I changed new doc referred me to a neurologist after all bloods were normal, new doc is great only been registered since January but they do telephone consultations over the phone.

Your doc sounds even worse then my last gp I would be switching right away I never known a gp to compare themselves to there patients she’s suppose to be there to help you not judge you, go see a new gp right away.

Good Luck