MS or something else?

New diagnosis and before diagnosis
1

Hi,

A newbie to the forums here, I have recently been having a quite a few weird problems and have been to the docs and got an MRI appointment through for 3 weeks time and a neurologist appointment should be coming though soon. MS has not been mentioned but then nothing else has either, so im just looking for some input as to weather this could be MS or something else, I realise its something that is notoriously difficult to diagnose.

a brief description of my symptoms are as follows, if I write it all it would take forever, but I still apologies for the long message.

Memory - its started to become really bad, both long term and short term, loads of little things like getting milk out of the fridge putting it on the side and then 20 seconds later going back to the fridge for the milk, forgetting names of people I have known for years, forgetting words mid sentence to the extent I have to sometimes re phrase what I was saying.

Speech ( imprecise speech I guess )- Slurring words occasionally ( once or twice a day, occasionally entire sentances ), getting words mixed up, things like trying to say “Thats some bad parking over there” but saying “thats some parking bad over there”, saying finite instead of final, Autistic instead of Acoustic.

Problem solving - generally its getting harder to do, simple maths that used to be simple proving hard ( IE I couldn’t work out 71-12=59), Adding up £1 in change. I tried it 4 or 5 times before I went to my wife for more change and she counted it out for me and I had the right change all along.

Shaking hands - My left hand keeps feeling unstable, after a few days my left hand and arm as well as my right hand shook for about 20 mins, for a few days everything was fine and then the left had felt unstable again, this time for a few weeks, a few days ago it had another shaky session but it was just my fingers, since then its been mostly better but a little unstable.

Fatigue - Basically that, I feel tired a lot, especially in the afternoons.

Muscle Twitches ( fasciculation’s? ) - I have been getting these a lot, in limbs, hands, buttocks, back, inside my abdomen etc etc.

Random stabbing pains - it feels like either a single pin being stabbed into a limb or an electric shock, I’ve had it in my arms, legs, toes and rib area, its been happening for quite a long time but it can go days between it occurring.

Abnormal sensations, Tingling - Mostly in my right shoulder muscle which occurs a very often. “Burning” - Not really burning but more like my right arm feeling like it was in strong direct sunlight which happened once or twice, lasting about half an hour. “Rushing” like there is water rushing through my limbs, again it happened once or twice and only lasted half hour or so.

Urinary issues - dribbling and leakage, increasing since about January, I have been for a prostate check and everything was fine with that.

Spatial awareness - Occasionally walking into door frames or corners of walls, I feel like there should have been enough space to pass but occasionally its not enough.

The thing that seems to have thrown the doctor is that nothing seems really seems to last for long ( memory issues aside ).

Thanks for any advice

2

Hi and welcome to the site.

Well it does sound as if there is a neurological malfunction somewhere!

As I have found out in the last 14 yrs, it could be MS or a myriad of other conditions too.

I`ve had 3 possible diagnoses and am still awaiting a definite one. I even got as far as a 95% PPMS one. That lasted 7 years and i was quite accepting of the fact.

But that has changed thanks to a numpty neuro! Not got much faith in them now.

Hope your`s is much bettter.

Keep coming on here, we must stick together for morale support, eh?

luv POllx

3

Hi Grunge and welcome to the forum, like you I’m also not dianosed yet although somethings have been ruled out ms hasnt, the scan will.clarofy things more along with any other tests they have lined up. As Poll says it can take a long time to dx one way or another all we can do is be patient and try to be open minded as many things look like ms andare easy fixed. I understand about the cognicient problems too I encounter it every day and it certainly worries me too, I have problems.wiyh named, words and counting. Here you have people to share your worries and problems with some of which you can get practical and emotional help with. Good Luck. Frank.

4

Hello, and welcome to the site

As Poll says, there are loads of conditions that can cause MS-like symptoms, so it’s pretty impossible to tell what someone could have from symptoms alone. The best thing is to try and keep an open mind, make sure that the neuro has all the info that he/she needs and then cross your fingers, toes and anything else(!) that the neuro will do the job thoroughly and come up with the answer!

I’ll cut and paste a regular post of mine about what I think helps at for a first consultation. Obviously it’s just my perspective, but it might be of help.

Good luck :slight_smile:

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: optic neuritis (recovered); 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.

5

Thanks for getting back to me, and thanks for all the advice, thankfully I have been keeping a list of all the oddness thats been going on so I can take that to the Neuro with me when I get the full appointment though.

Most of the issues i’ve got are mild to the point of not really effecting anything, just irritations, My memory is becoming an issue though, and the occasional sluring words and speech issue mixed with the mathy cognative stuff is what got me to go to the docs with it.

6

Hi Grunge, this sounds very similar to what I’m going through. I’m waiting for my next GP appointment as I’ve been to see her recently with bowel and bladder issues, had an ultrasound scan which came back clear. I think I’m most concerned about poor memory and getting my words mixed up or forgetting them altogether. The other day my young daughter asked to go outside and play in the garden. I meant to tell her to put on her wellies but I accidentally replaced the e with an i, which had her squealing with laughter and calling rude names for fun for the next 20 minutes. As I type, I’m missing out letters and forgetting words. I never learned the proper finger positions to type but manage with four or five digits. I can spell well but now I’m having to check what I write really carefully. I’m not sure about numbers as I was never great at mental arithmetic - always have to write things down to work them out unless simple maths.

I’m getting lots of odd body sensations, too. Like you say, they don’t last long. Isn’t it annoying when you finally get to the GP only to say 'it’s gone away now…". I really hope I’ll be referred to a neurologist. I had a traumatic first (and last) birth experience nearly 4 years ago. Little one is fine but I’m wondering if it has anything to do with my current experiences.

Wishing you and any others still undiagnosed, a swift resolution. In the meantime, may you still find things to enjoy and to be grateful for!

7

Hi All,

Thanks for all the responses, its much appreciated.

I had my MRI on Sunday, quite a weird experience and im just waiting for my Neuro appointment to come through now, I have no idea how long that will be though.

I’ve had a few more odd things occure, the latest was becomging very dizzy and disorientated in a supermarket. I couldn’t find my other half so wandered up and down the store for a while and all of a sudden the dizzyness and disorientation hit and it seemed as though everything was really bright and colourful, kinda like if you have the TV brightness and colour turned on. It lasted about 10 mins but I felt very weird for a few hours afterwards.

8

Hi All,

Thanks for all the responses, its much appreciated.

I had my MRI on Sunday, quite a weird experience and im just waiting for my Neuro appointment to come through now, I have no idea how long that will be though.

I’ve had a few more odd things occure, the latest was becomging very dizzy and disorientated in a supermarket. I couldn’t find my other half so wandered up and down the store for a while and all of a sudden the dizzyness and disorientation hit and it seemed as though everything was really bright and colourful, kinda like if you have the TV brightness and colour turned on. It lasted about 10 mins but I felt very weird for a few hours afterwards.

9

Hi Grunge and I am glad you have had the MRI and hope you don’t have to wait too long for the neuro appointment.

TBH it doesn’t really sound like MS as most of the symptoms you are describing are only fleeting, that is, lasting for only a few minutes at a time. This would be unusual in MS. By definition for a relapse to actually be a relapse you need to have the symptom for at least 24 hours. Lots of people can have momentary tingling or stabbing pains which can be quite insignificant. But if your memory is worsening and you are becoming more anxious as a result of this you may be focusing more on some of these fleeting sensations and so be more aware of them than usual…

I am glad you are getting checked out by a neuro to rule out anything more sinister but try not to panic too much at this stage. It is obviously impossible for us to try and diagnose you over the internet so I am NOT saying you are only anxious, just that it doesn’t sound like a classic presentation of MS and that the neuro is the best person to try and get to the bottom of things for you.

All the best,

Belinda

10

The GP mentioned it was strange that lots of the oddities ( probably the best way to describe it ) were fleeting, the only persistant ones are Memory, speech ( although the sluring seems to have stopped for now ) and tingling shoulder muscle. All the others are come and go.

Im surprisingly not that stressed or worried at the moment and it was more the fact that my wife mentioned something might be wrong ( it was the cognition stuff mostly ) that got me to the docs’. It might sound strange but I think the forgetfullness is quite helpful in that way as most of what happens is forgotten so im not stressing about it all the time. Its just as well im jotting it all down :slight_smile:

11

The GP mentioned it was strange that lots of the oddities ( probably the best way to describe it ) were fleeting, the only persistant ones are Memory, speech ( although the sluring seems to have stopped for now ) and tingling shoulder muscle. All the others are come and go.

Im surprisingly not that stressed or worried at the moment and it was more the fact that my wife mentioned something might be wrong ( it was the cognition stuff mostly ) that got me to the docs’. It might sound strange but I think the forgetfullness is quite helpful in that way as most of what happens is forgotten so im not stressing about it all the time. Its just as well im jotting it all down :slight_smile:

12

Thinking of the long term issues, I thought I had mentioned it in my orginal post and that was a 3 month long Esophageal spasm, the Doctor thought it was a sinus infection causing it but being someone who gets sinus infections quite often I didn’t think it was as I didn’t have any of the usual sinus headaches with it and the Anti Biotics did nothing for it, it started instantly and just finished instantly one day.

I realise no one on here can diagnose anything but its interesting to see if others have had similar issues.