Proceed or not?

New diagnosis and before diagnosis
1

I am a anxious 38yr old male.

My first episode of feeling unwell was back in 2008/9 where i went through numerous health problems (for 2yrs), refered to a gastro consultant and neurologist trying to find out my the cause of my problems. Brain/liver scans and numerous blood tests came back negative. The Gastro consultant put it all down to a virus …

Everything was fine till about 4-6 weeks ago when all my skin became very itchy (skin is now ok), first thing GP did was blood tests for Liver etc to rule out problems and again was ok. Then on Monday this week my right eye went all blurry for about 10-15 secs (was not painfull) and did correct itself straightaway. I immediately went to the opticians to ask them to have a look and again was happy with what they see. I did visit my GP in the evening and basically said i would like to see a neurologist.

I visited the neuro guy Tuesday this week telling him my concerns about MS, however after all his initial checks (physical/visual) his words were ‘i do not have a suspicion of MS’ so i left a happy man.

Yesterday i started to get the occasional pins and needles in my feet/hands. This would last anything from 30secs to 5minutes. Again highlighting my concerns. I have now booked an MRI of the brain tomorrow even though the neuro consultant thinks i should save my money.

I am an extremely anxious person so i am not sure what to do as i am well aware anxiety can cause numerous issues such as the ones i have been experiencing. I have also booked in with an anxiety counsellor to help calm my worries.

My dilemma is … do i trust the expert that knows a hell of alot more than me or do i keep persuing it and £500 for the scan?

2

I’m not diagnosed myself but would wonder whether you can ask your neurologist for an MRI on the NHS to rule out anything neuro going on? I also suffer from anxiety and I know I’d not leave any stone unturned to find out what caused any symptoms that were worrying me.

I just thought I’d bump your question up to the top again, there are lots of knowledgeable people on here who will be much more help than I am.

I’m off for my MRI at 6pm tonight gulp

Lyn x

3

Hello, I’m really not sure what to say really, just that in my opinion your anxiety seems to be ruling the situation. I fully understand how worrying and weird these symptoms can be and I’m not in any way suggesting you should ignore them but at the moment I would try and be open minded about what could be going on. There are many many conditions, a lot treatable that can give similar symptoms to MS. What makes you think it is MS? Could you not keep a daily diary of what is happening and when, it is far easier to see if a pattern emerges that way. That is what I did and it was easier to put forward to the Neuro, although I never mentioned any condition as that can raise the anxious alarm bell in most Neuro’s. Hopefully someone with more knowledge/experience will see your post soon and can help you. I am newly diagnosed, so I am wary of giving my advice/opinion (lack of confidence). Good luck Sam x

4

Hi Sam

My thoughts are with MS as my symptoms seem to mirror everything you can get with MS. At the moment the symptoms are quite mild and not effecting every day life … however the worry is.

As everyone can understand being in limbo is one of the worse feelings you can have. The thought of not knowing sometimes is harder to take than the initial diagnosis.

I would love to put it at the back of my mind and crack on with my life, however when a symptoms appears im straight onto google seraching (sigh!!).

Jason x

5

Also, good luck Lyn. x

6

Hi,

I think if you have £500 to spare, you might be better spending it on private counselling and/or other treatment to address the anxiety, to see if your symptoms OR your attitude towards them alter, once the anxiety is under control.

I can tell you that MS does not cause eye problems lasting “15 seconds”. Yes, eye problems are quite a common presenting symptom, but when I tell you that symptoms are caused by inflammation in the Central Nervous System, which consists of brain, optic nerve, and spinal cord, you will understand it couldn’t get inflamed and heal up again, all in the space of 15 seconds!

Yes, some symptoms are intermittent, but not usually as intermittent as that! If you had MS-related eye problems, they would likely persist for days or weeks - not 15 seconds.

I also haven’t heard of MS causing whole body itching. Yes, it can cause abnormal sensations, which are experienced as itching by some people. But exactly where the abnormal sensation or “itch” is felt depends on the precise location of the damage in the brain or spinal cord. It wouldn’t be damaged “everywhere”, so you’d be very unlikely to experience itching over your whole body. People usually complain about a specific “itch” (My head, my hand, my leg etc.)

I’m certainly not saying your symptoms aren’t real, but my gut feeling is they aren’t caused by MS. I suppose you could argue: “What price peace of mind?”, and if £500 for an MRI would stop you fretting about it, perhaps it would be worth it? Or if the scan was clear, would you then start fretting that perhaps it wasn’t high quality enough, or transfer you worries to some other serious condition?

I can’t advise you what to do: only you know what’s best for you. But I do think your neuro has a point when he recommends to save yourself some money. I’m sure if he was at all concerned, he would have referred you for a scan himself!

Tina

7

Hi ya, in my opinion, you should save the £500, trust the expert, but keep your appt with the anxiety counsellor. My advice is to stop the Googling altogether. There are any number of symptoms which if tapped into a search engine will bring up results almost certainly including MS. Googling can have its uses but sometimes it can bring unnecessary worry and angst, and we’ve all done it at some time or another too, so you’re almost certainly not alone on that score. Clearly your symptoms are real, but remember that symptoms of this nature can be caused by one of many different things, lots of which are easily remedied. Try to keep an open mind, and if your anxiety does cause you additional problems then perhaps aiming to have a better control over it may also resolve the symptoms you’ve mentioned. There would be nothing stopping you from going back to your GP afterwards, if you have new symptoms or your existing ones became worse. Obviously only you can make the decision on what to do but make sure it’s the right one for you. Good luck with whatever you decide, Debbie xx

8

Thanks for everybodys input.

I guess im over concerned as i had a bout of different symptoms back in 09 and i think i have read somewhere that the symptoms can dissapear for a long period then return.

In 09 i had such problems as bladder felt full a lot of the time, acid reflux and floaters appeard in my eyes. Again when visiting the neuro guy back then, visual/physical checks plus MRI proved negative.

I guess after reading many stories that neurologists can get it wrong it upped my anxiety levels…

I have decided to cancel the MRI this time as im hoping these symptoms will go. Anxiety councelling has been booked for August.

Jason

9

Thanks for everybodys input.

I guess im over concerned as i had a bout of different symptoms back in 09 and i think i have read somewhere that the symptoms can dissapear for a long period then return.

In 09 i had such problems as bladder felt full a lot of the time, acid reflux and floaters appeard in my eyes. Again when visiting the neuro guy back then, visual/physical checks plus MRI proved negative.

I guess after reading many stories that neurologists can get it wrong it upped my anxiety levels…

I have decided to cancel the MRI this time as im hoping these symptoms will go. Anxiety councelling has been booked for August.

Jason

10

Hi Jason, and well done you for making that decision; it can’t have been easy. A friend of mine had counselling sessions, and for her it helped. Basically her confidence levels were that bad they were having a detrimental impact on all aspects of her life. The sessions have made a notable difference to her, and to others who know her. It’s a different situation to the one you find yourself in, I know, but it just goes to prove that sometimes a little extra help can make a tremendous diffference. Good luck, I hope things pan out for you. Debbie xx