Forum

symptoms

New diagnosis and before diagnosis
#1

Do i have M S? i am a 43 yr old woman, who has been going backwards and forwards to docs from age of 23yrs with the same complaints and three months ago demanded my doctor stopped dismissing me and send me to see a neurologist!!! who i am seeing in six days time…

It started with undiscript ankle pain which came and went. over the years this pain has spread to my knees and hips lower back elbows and wrists . had test after test but has always come back fine, or a little bit of inflamation. I now have permenant leg pain which is becoming increasingly debilitating. I have also suffered from terrible headaches and neck aches since i can remember. My memory and cognitave ability comes and goes i can see people are talking to me coz there lips are moving but all i seem to hear is white noise and they have to repeat things over and over again. For about three to four years i have suffered horrendus night sweats and mood swings, so much so i had my ovaries removed (doctor said it was probably hormonal) this didnt work. For about four years i have had absolutely no sex life. For past year my arms go numb this is at its worst during the night , and sometimes i feel as though my insides are shaking. quite often my hands shake (I look as if ive got the d t’s from drinking-but i dont drink). i have been on and off antidepressants for past twenty years and my sex life, mood swings, memory problems have always been put down to this. lately i have developed serveral facial ticks, have started loosing my balance, and my body feels like its ‘body popping’, and i am getting pins and needles in my upper lip. I know i am rambling, but my doctor has told me that i have had loads of tests and they all show nothing is wrong, so he wanted me to see a shrink, as he is suggesting its all in my head. I asked him if he thought i was mad and he repilied 'well i will ask you that question-do you think your mad. he also said that if i was suffering from all of these symptoms for all these years i should be dead. i really feel as if ive been dismissed by my doctor for years (20 to be precise) Or do i sound mad?

#2

What an appalling way to be treated by your GP. So glad you have insisted on being referrred to a neurologist. Let us know what happens.

#3

Hello and welcome :slight_smile:

Unless you’ve had MRI scans, lumbar punctures, evoked potentials, and various other tests that neuros generally use, your GP is utterly out of order to claim that there is nothing wrong just because you’ve had loads of tests. The simple fact is that many neurological symptoms do not show up in the sorts of tests that GPs order. So well done on forcing the issue and demanding a referral!

I’ll copy and paste an old reply of mine with suggestions about how to deal with a first referral: you may find it helpful.

Could it be MS? Anything’s possible, but there are actually loads of conditions that share similar symptoms with MS (some of which are relatively easy to treat) so it’s best to keep an open mind. Hopefully the appointment will get you some answers at last!

Karen x

These are the things that I think help at a first consultation:

No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)

  • Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009 (recovered): optic neuritis; September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.

  • Take a (short) list of questions if you have any.

  • Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.

No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.

No.3: Be honest. Do not exaggerate and do not play things down.

No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.

No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.

There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.

#4

thanks for the advice and support.

I have my first visit to the neurologist on wednesday, and although it really cant come quick enough i am SO nervous.

Since going to the doctors about three months ago i have developed facial ticks (numb tingling top lip on the right hand side), and my right hand side of face is twitching. At first i could only feel it but on saturday it was so servere my right eye was opening and closing with the force of it. Half of my throat has been going numb also. Also this weekend i have just sat on settee as i have felt so tired and have been shaking uncontrolably ‘inside’. but i have noticed that most of the weekend i have felt drunk, but not in a good way, and have felt as though i have been sitting staring into space.

As i said in my first post, i have been going back to the doctors for twenty years and am really scarred that i have been undiagnoised for all of this time and as there ALWAYS seems to be something going on now, that i have entred the second stage. Is this possible?

Something i didnt mention to the doctor (more embarrassed than anything) is that i have now , not made it to the toilet in time and have urinated myself. need to go came on really quickly and i couldnt hold it at all. This has happened four times now over the last four months.

I dont really know what i am hoping for ie a diagnosis or not. If I get a diagnosis then i have been right all this time…there has been something wrong with me and my doctor has been wrongly dissmissing me. Or if there is nothing wrong with me, then my doc must be right. Its all in my head, not sure how though i dont know how there would be any room coz it feels full of ‘candy floss’ (fuzzy) I am also worried that my driving lisence will be taken off me, as a result of the staring periods. has anyone had their driving stopped?

#5

I don’t think there’s a great deal to be gained by guessing what kind of MS it might be when you don’t yet know if MS is even a strong possibility - best to wait and see what the neuro says.

Please don’t be embarrassed about bladder problems - you’d be amazed at how often GPs get told about them! It’s also very important to tell the neuro: it’s part of the puzzle the neuro has to solve and withholding a key piece might mean that he/she doesn’t get it right.

As far as driving goes, some people with MS do lose their licences, yes, but it’s only when they really shouldn’t be driving so it’s fair enough. It would be terrible to hurt someone, so please don’t drive if your “staring periods” are potentially dangerous.

Kx

#6

lol Your totally right, thanks. roll on wednesday, hopefully i will have some answers, that may put my mind at rest.

Thanks for taking your time to bring me back down to earth.