Saw neuro for first time today

New diagnosis and before diagnosis
1

Hiya, I’m pretty new to this site, have only posted once before.

Basically my story is this …

Have been having symptoms since January, started with feeling faint, dizzy, then started with tremor in left hand (mainly thumb) my legs would also shake quite badly, especially when first standing up, have often had to go round the house on my hands and knees.Legs very weak but heavy, found it quite difficult to place them, was like walking on sponge, my spatial awareness is pretty rubbish, I often walk into doors & can’t seem to lift my foot high enough if I need to step over something. I’ve had to start walking with a crutch as I feel more secure this way.

I have also had problems with my vision being blurry, seeing floaty things & its often like I’m in a fog, where all my vision is foggy. My tongue feels too big for my mouth quite a lot & I think my speech is slurred. I get a weird burning pain in my feet/legs which comes and goes. I also have a weird thing with my head where I feel like a nodding dog, get a weird creeping feeling as well as if something is crawling over my skin?

I’ve probably missed lots off there but you get the idea, lol

Anyway been under ENT, recently had balance tests which have revealed that my right ear balance mechanism is working at 37% less than my left which is causing my dizziness & have been diagnosed with Meniere’s Disease.

Today I saw the Neurologist for the first time & he seemed to think that all my symptoms point towards MS, he has ordered an open MRI as I’ve tried the normal one on several occasions now with no luck as I suffer with claustrophobia.

I suffer with anxiety & panic attacks, have done for 7yrs + now and I’m on Fluoxetine for this, also on qvar for my Asthma.

Just really wanted to know if I get a confirmed diagnosis what is the next step, what do I expect, what’s going to happen to me ?? I don’t know much about MS admittedly, I try and read up but I think it goes straight over my head and just doesn’t sink in at all but then if it isn’t confirmed what on earth is wrong with me ??

Hope this all makes sense, I’m just so confused really, my mum asked me how I felt about it but to be honest I really don’t know ?

2

Hi Becca and welcome to the forum, everyone on here is nice, very understanding and sympathetic.

Unfortunatley because MS is so complicated and diverse that it is different for everyone I would be unabled to tell you what to exoect. But in my case I have had 4 different MRI scans, a fancy eye test where they strap electrodes to your head and tst how fast information gets to your brain.

A lumber puncture when they extract fluid from your spine for testing and several blood tests. All test are pain free ad fairly straightforward

As you may have read MS is different for everyone but try not to worry there is lots of help out there when yiou finally get a diagnose and god luck.

3

Hi Becca.

I think the best thing for now is to just take one day at a time and not think too much about a diagnosis. The main reason for this is that, while it might be MS, it could also be something else - in which case, you might spend ages worrying and learning about MS only to be told it’s something completely different!

The other reason is that, depending on the MRI results, the neuro may want to do more tests, wait for something else to develop or give you a diagnosis. So, it’s kind of hard to know what will happen next.

Even if it is MS, it’s impossible to tell you what will happen to you because we are all so different. Some people have very mild MS to the extent that no one would even know they have anything wrong with them (including themselves! - MS is sometimes diagnosed at postmortem when someone has died of old age!). At the other end of the scale, a very small proportion of people have very severe MS. The rest of us are in the middle somewhere. One thing to hang onto: for the vast majority of us, MS really is not the end of the world. Yes, it brings challenges that we’d rather not face, but we can still have long and happy lives. Life can still be good.

I hope you get some answers soon.

Karen x

4

Thanks for your replies.

As I said I really don’t know anything about MS so please don’t be offended by my next bit but I guess I just wanted reassurance that I’m not going to die younger because of it or that I won’t basically become a vegetable and be a burden to my family, I really know nothing & I guess I’m a little frightened to really research things.

Does everyone have to have a lumbar puncture for a proper diagnosis ? The thought of one of those scares me so much.

I’ve had loads of blood tests, a few have been slightly high/low but not of any significance apparently. the only one that has been is the ESR (Erythrocyte Sediment Rate) which was high, re-tested after 3 months and had come down slightly so got to re-test in 6 months time. Not sure if that can be related to MS as it is a test that shows inflammation in the body but is non specific as to where.

MS had flicked through my mind initially but then I was convinced it was Intracranial Idiopathic Hypertension, quite a few friends have this & they all said my symptoms were exactly the same as theirs, I mentioned this to Neuro but he said he didn’t think it likely at all ?

I forgot to mention to Neuro that I get quite a bit of pain in my legs, mostly my shins, also a lot of pain at the base of my skull (bottom of hair line) and I get this full feeling in my head all the time.

I know I’m rambling on, guess just want to get it all out & see if others can relate at all ?

5

Thanks for your replies.

As I said I really don’t know anything about MS so please don’t be offended by my next bit but I guess I just wanted reassurance that I’m not going to die younger because of it or that I won’t basically become a vegetable and be a burden to my family, I really know nothing & I guess I’m a little frightened to really research things.

Does everyone have to have a lumbar puncture for a proper diagnosis ? The thought of one of those scares me so much.

I’ve had loads of blood tests, a few have been slightly high/low but not of any significance apparently. the only one that has been is the ESR (Erythrocyte Sediment Rate) which was high, re-tested after 3 months and had come down slightly so got to re-test in 6 months time. Not sure if that can be related to MS as it is a test that shows inflammation in the body but is non specific as to where.

MS had flicked through my mind initially but then I was convinced it was Intracranial Idiopathic Hypertension, quite a few friends have this & they all said my symptoms were exactly the same as theirs, I mentioned this to Neuro but he said he didn’t think it likely at all ?

I forgot to mention to Neuro that I get quite a bit of pain in my legs, mostly my shins, also a lot of pain at the base of my skull (bottom of hair line) and I get this full feeling in my head all the time.

I know I’m rambling on, guess just want to get it all out & see if others can relate at all ?

6

MS shortens life span by a small amount on average. I can’t remember the “official” figure, but I think it is something like 4 or 7 years - so if someone would have lived till 90 if they didn’t get MS, they could probably make it into their mid 80s with MS.

The number of MSers who end up entirely dependent on carers for everything is tiny. Most MSers live really quite normal lives.

You don’t need to have a lumbar puncture (LP), but it can speed up diagnosis. The procedure is actually pretty painless and most people are fine afterwards although a small percentage get the “headache from hell”, but time, painkillers and fluids usually take care of that. Btw, if it is IIH, the LP would actually help!

Don’t worry about missing things out from your appointment - you can always tell the neuro next time if it’s important.

Kx

7

Thanks Rizzo, really appreciate your reply. I’m sure the headache after a LP can’t be any worse than the killer headaches i’ve had recently where its felt like my head was going to explode. Be glad to just get the answers and then start living my life with what ever ‘it’ is x

8

I didn’t have a head ache after my LP so you may be lucxky like I was, I just stayed lay down for a few hours had a cup of coffee then my aunt took me home, it is a pain free procedur so yiou shouldnt worrry yourself. the most painful; thing was when she injected the anasthetic.

She also said I was a very ‘paitent’ paitent’ good luck I’m sure it will be fine.

9

Aww thats great Jon, glad it went well for you. I’m most definately not a patient patient, the dr will have to tie me down and sit on me to get anywhere near me lol