Is this MS or ME or something else - Going crazy!!

New diagnosis and before diagnosis
1

I’m a 37 year old male, overweight but physically active. I have had some anxiety issues in the past and am currently

medicating with PPI medication for reflux / GORD. I also have had a long term persistent cough that seems to come after

having a virus and takes months to get rid of.

About 10 weeks ago (started Nov 2013) I had a virus, it gave me some terrible sinus pain, rhinitis and made me feel ill for

a week or so. It also made my head completely numb from my top lip to the back of my crown (trigeminal nerve area?) this

numbness was on both sides of my face and head. All my blood work was fine save for a low Vit D level and I was put on a

supplement to reverse this. I don’t know if this has worked although the course is now finished.

As my numbness didnt improve, I was sent for a brain MRI after a couple of weeks and this came back with no sign of

demylination and no space occupying lesions. The GP is satisfied this has ruled out MS (although I remain unsure).

The head numbness is still with me, but now it seems better on one side (my right side) but seems to have got worse on the

left. I get headaches in my temples a lot and my ankles feel as if they are swollen even though they are not. I’m getting

tingling in my hands/ wrists and random pain in my fingers, neck, knees and bizarrely in my testicles (never both at the

same time). Sometimes instead of pain I can sense heat. My son had a virus a few days before me and it made him unable to

bear weight in one of his legs for a short period of time.

My doctor thinks is a combination of Bells Palsy and ME. He thinks I’m simply post viral and I just need to get on with it

until it goes.

Questions that spring to mind are:
1 - Does anyone disagree with my doc?
2 - Do you think there is something else I should be doing?
3 - Are there coping mechanisms / medication for my current symptoms?

I’m quite an anxious person (new parent to a child who has various respiratory and allergy issues) and have had tingling in

my head / headaches in the past but have always put these down to stress and once I’d been to sleep they were gone until I

had another stressful day.

I don’t know what is real and what is my mind working overdrive. For example I find it much harder to think of words when

in conversation, is this just me getting older or is it a symptom of something else? Also I do work with computers a lot so

I wonder if this giving me the headaches. Sometimes I find that drinking a rehydration supplement helps with the tingling,

I used to get bad pins and needles when hungover. I’ve cut out all alcohol and caffiene while I try and get my head around

all this.

I would value any thoughts anyone might have.

2

Have you ever googled b12 deficiency symptoms… This could be of interest. Hth Lisa

3

My B12 is completely fine, was only D that was an issue. I’ve been taking supplements since this all kicked off.

As I say my bloodwork has been otherwise fine. Thanks for the suggestion though.

I guess what i’m asking is does a clear MRI completely rule out MS? I notice the symptoms seem very similar to ME.

4

It could be M.E. although i hasten to add I am not a medical practioner and this is only my thoughts. My daughter in 30’s had pneumonia, and also a bit of stuff going on around her. She ended up sick with post viral problems and was eventually diagnosed with M.E.

She also had vertigo and Bells Palsey and may other symptoms.

IF you want to read about M.E. google The Hummingbirds Foundation for M.E. it is an AMAZING resource.

The problem with M.E. and MS is the symptoms are practically the same even to lesions…

As to getting better. Well you have to learn to PACE yourself. Your body if it is M.E. has been under attack and you need to rest it to recover.

Actually very similar to MS.

Stress is also a trigger, so try to eliminate this if you can, perhaps take up a bit of meditation or even yoga is good.

PACE is the key.

IF it is M.E. it will settle down, my daughters did although i hasten to add it took several years to do so, and she still gets the odd relapse but it was a hard road. She did a lot of CBT and pacing. She is now back working and enjoying life.

Another thing too, good healthy diet is needed. If you have low Vit D you need to go out into the day light even if its not sunny. Just 15 minute walk outside will give you a vit d boost. (I know the weather has been awful of late but there has still been days when its sunny).

Anxiety can also give you some of your symptoms.

I would read up on M.E and get yourself really healthy and see how it goes. IF you have no improvements then I would look at other things.

Like I say I am not a MP only sharing an experience from my own family. IF in doubt always check back with your GP.

5

Thank you for your thoughtful post. There is a lot of sensible stuff in there to digest.

I know I should try and chill out more and I’ve tried really hard on that, all of these recent events have put into perspective what’s important in life. The only thing is it’s really hard to relax and destress when your body is doing weird and not so wonderful things. It’s hard to not think of the worst case scenario and the daft thing is i’m not sure what that even is.

It’s also hard to move forward when you are not even sure what you have.

6

Hi Chesterton,

It is a very difficult one, and I think that Goldengirl has given you some excellent advice. One of the key symptoms of ME is a bad reaction to exercise (which can happen up to 48 hours later). If you are still able to be physically active, then it could be post viral fatigue and it’s very important that you rest when you need to and don’t overdo things.

No, a clear first MRI doesn’t always rule out MS unfortunately (sorry), but it does sound like you anxiety may be making things worse.

It may be worth asking your GP to refer you for counselling, so you can develop some coping strategies. Anxiety is a horrible thing to suffer from, and it sounds like you have an awful lot on your plate at the moment.

Mags :slight_smile:

7

Thanks for your reply.

Touch wood I havent felt completely wiped out with fatigue so I havent been overly concerened with this yet.

It’s the nerve thing that is really disconcerting me. The tingling and numbness is really bothering me, I seem to get pins and needles at the drop of a hat and sometimes i feel like the victim of someone’s voodoo doll with random pains all over especially in the places recently mentioned. Another thing that worries me is I said “Happy new year” to a couple of people at work this morning who I had already said it too last week and had no recollection that I had.

Fingers crossed i am just post viral and have to get over it but something is definitely afoot. I just wanted to make sure I wasnt missing something that I should be talking to my doctor about. I see him the day after tomorrow and will definitely ask for a neurology referral.