Possible MS

New diagnosis and before diagnosis
1

Hi

I have come across this forum whilst looking for some info on MS. My doctor has referred me to a specialist spine doctor who i am seeing in 10 days.

I have Trigeminal Neuralgia and have had 2 severe episodes. 1st one was back in 2011 and only last for 6 days the pain came in 30 minute waves and there was no let up for 6 days, i got lucky and saw a GP who knew exactly what i had immediately and put me on an epilepse drug (sorry cant remember the name). Eventually it went as quickly as it came, fell asleep in the afternoon for an hour and woke up and it was gone.

I didn’t think much more about it until feb 2014 when it suddenly came back. Exactly the same symptoms/ attacks but lastly 3 weeks in total this time. However this time we had to turn it off using Lyrica.

​at the same time i had been suffering with lower back pain that nothing could shift (oestopath/ chiropractor/ sports physio) along side this i had a strange/ uncomfortable feeling in my right testicle that felt like it was being constantly cupped/ held.

I had a battery of scans and herniograms to see what the problem was, nothing was found and in the end i could manage the back pain with sports massage every 2 weeks and the testicle feeling subsided.

In the past 2 months the back pain has come back with a tightening/ tingling feeling going through my hip and right side/ lower ribs. alongside this my right leg has started to feel very tired (not heavy or fatigued) towards end of the day (i sit down at a desk most the time). I have also started to feel the nerves fire in the quad and calf at random times (with my neuralgia i know what a firing nerve feels like quite clearly).

went back to my GP on monday and he has said its now starting to paint picture of wider nerve issues i.e. one problem (neuralgia) is unfortunate but 2 problems would be too much of a conincidence. Every since being diagnosed with neuralgia i have been accutely aware of MS ('m led to believe its one of first sign)and asked him does he think i have it. He didnt say yes and didnt say no, all he would say is that it has to be on the table.

Deep down I think there is a problem as I have other issues with very tired eyes and excessive sweating all the time (i have had this since early teens).

But on the other hand I don’t have severe fatigue or actually 90% of the other main symptoms that are commonly associated with MS.

My question is (if any one can answer) can MS start with such mild symptoms. Does it get progressively worse? Is neuralgia enough of an indicator of MS.

sorry, i know i should just wait to see the specialist but i know that he will want a MRI scan which i will pay for myself (rather than nhs) to speed it up but that will still be more than a month away. I dont want worry my partner for something that could be unnesassary as she has other bigger problems to deal with a parent in the last months of their life.

I’m not looking for a definitive answer but perhaps some clarity or direction on what is an incredible frustrating and confusing situation.

Thanks in advance

Tom

2

hi tom

i’m glad that you’re not asking for a definitive answer because i can’t give you one.

to be brutally honest, diagnosis involves a lot of waiting.

the more you fret over it, the longer it appears to take.

you have a time scale for when you see a neurologist so please try to be patient.

there are other possible reasons for your symptoms and if you’re lucky it may turn out to be something other than ms.

just expect the unexpected!

your partner needs your support so use this time to be there for her.

my symptoms have been mainly sensory, numbness and tingling in feet and hands.

my ms was steady for a few years but recently seems to be getting worse. however it may not be this bad for ever.

the MRI will be a major factor in helping your neuro understand what is going on with you.

if you do get a diagnosis and if it is relapsing remitting you may be offered a disease modifying treatment.

maybe do some research so that you have some understanding.

then again, i’m jumping the gun here.

if you have the time, learn mindfulness meditation because it is very helpful when you have a big question mark over you.

it also helps with pain relief.

good luck

carole x

3

Carole

Many thanks for your response. I know i must waiting but for a very impatient person by nature and this difficult to say the least.

I will have a look into what you have suggested as being forewarned etc.

Once again thanks for taking the time to post.

Tom

4

Yes, it is incredibly frustrating and confusing.

As your GP says, building up a picture, or story, of problems that are potentially suggestive of this or that condition is at the centre of how they draw up a list of suspects. Then they start chipping away at the list to exclude things and see what they’re left with. It’s a slow old process, but thorough.

Most people with MS started with mild symptoms - it is the accumulating damage of years that tends to cause the main nuisance - but that’s not to say that MS is what you’ve got. I have no idea what you’ve got, obviously. I hope that you get some answers soon.

Good luck.

Alison