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HELP!!!

Hi everyone. I was hoping someone can help… I’m really worried bout my daughter Jenny who is now 19 years old.

Basically, I have Lupus (SLE) and my brother had MS and died pretty much just when he was diagnosed. He always had health issues but put on a brave face and never liked telling anyone when he wasn’t well while we were growing up. We just kinda attributed his falling and dropping stuff as clumsiness. I was living in the UK and he was in Zimbabwe so hadn’t really seen him for some years before he passed away. As we have immune problems in the family I am very worried.

My daughter has suffered from migraines forever. She has possible IBS cause when she’s not constipated she’s got the runs. The GP keeps prescribing lactulose. She has joint pains which all the while she was growing up they put down to growing pains but she’s not growing any more and she still has the pains. Of late my daughter has experienced numbness in her hands and feet. Also, when she had migraines she would say everything does black for moments and she can’t see - now this happens even without migraines. Her hair is falling and she now has three egg sized bald batches on her head. She has bouts of confusion and can’t concentrate. Suffers from depression. Says she feels burning sensation on he skin. She is tired all the time and sleeps a lot of the day. She has so many issues - not all symptoms at the same time thank God but the doctors are still not taking things seriously.

I was thinking about getting her tested privately - I know it’ll probably get me into debt but I am so stressed its making me ill. Can anyone recommend a good specialist or somewhere that I can get her tested. I live in near Heathrow but would be willing to take her wherever needed to get things sorted.

Hi Gizmo,

A lot of this does not sound consistent with MS.

MS does not cause joint pain or hair loss, and although it commonly causes vision problems, they would not typically be for just moments at a time. This is easier to understand if you know that vision problems in MS are usually caused by inflammation of and/or damage to the optic nerve. In common with any other inflammation or injury, this does not come on in just seconds, and then go away again just as quickly.

A private MS investigation costs not just hundreds, but thousands of pounds. I know, because I was diagnosed that way - but luckily, insurance covered it. As your daughter would need all the same tests, I imagine the final bill would be very similar, even if the verdict was: “no evidence of MS”.

I know that, as a mother, you would do (almost!) anything for your daughter, but would advise you to think very carefully about making such a huge financial commitment, when actually, the evidence is sketchy that MS is even the problem. Although there is some overlap, some aspects just don’t seem a good fit, so my worry is that if you become too single-minded about “proving” it’s MS, you may spend huge sums of money on something that’s a red herring. There are at least 100 conditions that share some similarities with MS (again, I know, because I was tested for every single one of them, and told how many they tested for), so just picking one of them - because it’s the best known, or the one you fear the most, or whatever - does not seem a good strategy for getting to the root of the problem.

I am not suggesting you should do nothing, as there’s clearly something the matter, but before you spend thousands of pounds (assuming you are able to) on what is really no more than a hunch, I would try some other things first, like maybe a change of GP. If you feel you are getting nowhere with the current one, or not being taken seriously, then a switch may be beneficial. Sometimes doctors - like the rest of us - can get set in their ways, and not see the wood for the trees. It may be helpful to get a fresh pair of eyes on the case, in case they see something that has been overlooked 'til now.

But I don’t recommend paying for this! You can formally change doctors, or, if it’s a multi-partner practice, you can ask to see a different one, or, if you want to be a touch more diplomatic about it, just stress that you don’t mind who you see, and accept the first offer that isn’t with your usual doctor. Then they won’t get offended, because there’s no hint you were dissatisfied - you can just say they didn’t happen to have a convenient appointment, so you saw one of the others.

Sometimes a different doctor has a completely different approach, so it’s worth a try, but I wouldn’t get too hung up on the MS theory, and I certainly wouldn’t insist your daughter is tested for MS. Just stress that you are concerned about the general lack of progress, and see if a new GP can shed any new light.

Tina

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