My dad has MS and I have symptoms!

New diagnosis and before diagnosis
1

Hi firstly I’m 17 and have been experiencing these symptoms for about 3 years now. My dad has had MS for like 15 years now and I have been to the doctors about my fatigue and pain but she just sent me for a blood test which came back clear and she just sent me off with no help. Here’s my symptoms:

extreme fatigue

muscle pain/aches

tingling/pins and needles in head and legs

numbness of arms

anxiety and depression

I find it hard to get around as sometimes I trip on nothing

I know this could be nothing but I am EXTREMELY tired all the time to the point where I am crying in bed not wanting to go to college but I have to. These symptoms get worse in specific types of time but I do always have fatigue and pain. I know it’s not hereditary and that there’s only certain genes but I know that there’s something wrong with me but I don’t know what and I literally have all MS symptoms. Another thing is that I’m scared to go to my doctor as she isnt very nice and I know that often she believes that I’m not serious about this but I really am it’s getting me down! HELP!!

2

hi beckyemma

could you not see a different GP?

ask for a referral to neurology because it really isn’t good carrying all this worry with you.

the neuro may find nothing amiss but at least it will set your mind at rest.

get your bloods done too because you may be low in B12 or Vit D3 both of which would make you feel tired.

do you sleep well?

maybe you need to learn how to sleep properly.

also mention the pain to your GP.

good luck

carole x

3

Hi Becky ,

Seems like you need to see a different gp who could give you a proper examination and potential referral as this seems to be causing you a lot of distress.

Ive had all those symptoms and it turned out not to be ms, however they did give me an MRI to verify this .

Good luck x

4

My sister and first cousin have MS.

About 4 years ago I started showing symptoms so went to my local GP, I was told that I had a trapped nerve in my back !

Over about 2 weeks things started getting worse so I went back to my GP’s but had an appointment with a different GP, as soon as I mentioned the family link with MS she put down her pen and rang our local neuro dept, spoke to the MS consultant and I was sitting in front of him within 48 hrs.

The initial GP dismissed my concerns with MS already being in the family.

The ball started rolling with test after test, including MRI’s, Lumbar punch ect ect , I was diagnosed wth Relapse & Remitting MS within 2 months, yesterday I had an appointment with the consultant due to some ongoing problems, he said theres a “hint” that I may of progressed to secondary progressive, which I had already suspected anyway.

Still though not a good day !!

My consultant, here in Swansea, who apparently is one of the top MS consultants in the country, said theres no evidence yet that proves theres an hereditary link with MS !

Personally I think there is a link.

Recently my other cousin (the sister of the cousin who has MS), is now showing very very similar symptoms to what her sister did a few ago !!!

So that could possibly now be 4 confirmed MS cases all in the same family, which does make you think theres is an hereditary link !

ALL THIS FROM A TRAPPED NERVE IN MY BACK !!!

GP’s eh, what a bloody laugh !!

5

Becky,

Dont just sit on this, get more opinions, see another GP, insist on a referall.

Theres lots of things out other than MS that could be giving you these symptoms, thats why they do so many test’s, basically eliminating all the other illness’s first, so try not to worry.

Good luck.

6

Jactac, I think what your specialist (at Morriston?) is saying is that the evidence is that, whilst there might be “clusters” of MS in a family - possibly because of a genetic element to the disease - it is not a hereditary disease. If it was a hereditary disease then you could only develop MS if there were others with MS in the family. There is no history of MS in my family at all (don’t have loads of blood relatives so quite easy research to do) so if it was hereditary I wouldn’t have it!

7

Jactac. From what I have been able to understand from various research papers I have read (but probably not understood at all) there is a theory that MS develops when there are a number of different factors all together at the same time. One of those factors might be genetic (and of course there is the higher propenderance of MS amongst certain ethnic/geographical groups) but there also have to be other factors present before you can shout House! in your game of MS bingo.

8

What if, and just a thought, you dont actually know if someone in your family suffered from MS ?

Maybe going back going through your family line someone did have MS but at that time it was not understood what the problems were with the individual and the so called professionals at that time put the symptoms down to other another illness, perhaps this sort of illness skips generations, perhaps theres a gene in some families that trigger this off, perhaps that family gene stays dormant until other factors wake it up.

I dont know the answers, god if I did I would make us all better, but when my sister and first cousin have it, and now possibly my other first cousin it certainly makes me wonder if theres a family link.

My consultant is at Morriston, are you a patient there aswell ?

I find him very pleasant and he explains everything, that’s if you get the chance to see him, however getting the specialist nurse, (I use the word specialist very loosely), to understand you when things are going bad can sometimes be, in my opinion a total waste of time.

My recent visit (last Thursday) was arranged after I rang up and spoke to the MS physio about my symptoms and as she was concerned about certain things, my specialist nurse didnt think it was necessary to see the consultant.

Consultant confirmed that I might be progressing, and has now arranged some MRI scans, medication and physio.

Hats off the the lady MS physio for taking notice when I spoke to her, yet again another big thumbs down to my specialist nurse.

9

Definitely no MS or MS in my family going back 3-4 generations on both sides right into the mid 19th century. We have a tendency in the family to marry quite late and the majority of us don’t have children. I have an incredibly skinny family tree!

10

Like I said, I think that MS is not hereditary (ie it is not down to a “carrier” in the family like haemophilia etc). I do, however, think that there is a combination of factors involved SOME of which might be common in a family or even racial group. It’s like winning the “anti-lottery” when all your MS numbers come up together!

11

There are, of course, some conditions that are similar to MS that are hereditary. Poll (Boudica) has HSP that was misdiagnosed as MS for some time. HSP is a hereditary condition.

12

I am in Cardiff and under the specialist MS team at the National Hospital at Wales. Cardiff has a very good reputation but, if we lived nearer,I would have preferred Swansea. My OH is originally from Swansea and his family have links with Morriston. Both his parents were nurses there and his father was under the neuro team when he developed terribly aggressive Parkinsonism. His mother raised thousands for the neuro unit over the years :relaxed:

13

That is basically the point I was trying to make.

Is there a connection within ones family that when certain things, genes or what ever it might be come together you are then more likely to have MS.