Thank you for advice

[izzy180]

This is a thank you rather than a question but about 18 months ago I posted with my concerns about possible MS after 10 years of symptoms and 2 previous generations of my family with MS. I got practical and concerned comments that gave me the courage to change my doctor (who would not refer me to a neurologist), present a detailed list with dates to my new doctor who referred me straightaway to a Neurologist. After the MRI scan I got my diagnosis of MS from people who couldn't believe I hadn't already been diagnosed.

I am now in contact with people who know what they are talking about (and don't think I'm crazy) and have just finished my third month on Rebif. Of course I'm not overjoyed about my diagnosis but after 10 years of strange symptoms and people thinking you're a hyperchondriac it's great to know what's going on and to be getting treatment. I'm also very aware that the people with MS in my family before me were never offered any treatment so I should be grateful for that.

So really this is a thank you for very helpful practical advice from this site that made a difference.
I'm sure I'll be back in the future for more!

[Dagun]

Thank you Izzy for sharing your story/journey to the diagnoses. It helps knowing that people that wait so long will someday get diagnosed, so they can start treatment. I´m hopeful that I will get "figured" out in the nearest future :). I think my neuro is always waiting for my eyes to show some signs, he needs me to get some of the typical noticeable symptoms.

Good luck on the Rebif,
My best,
Dagun    

[izzy180]

Thanks Shell, your comments are very much appreciated and particularly from someone who's been there as they say.

So far the Rebif is going ok, much better than I thought it would and I'm actually pretty good (for me) at the moment. This website is such a great resource and I'm sure I'll keep in touch as issues come up.

Thanks again

Izzy

[izzy180]

Dagun,

I also meant to say I have permanent numbness/tingling in my fingertips now, that is my one constant symptom. I don't think the feeling is coming back, my point is, I always used to try and ignore/dismiss this but obviously something was going on so trust yourself on these things.

Good luck,

Izzy

[izzy180]

Hi Dagun,

I live in the UK and in order to get a diagnosis you have to get referred from your local doctor to the hospital. In the earlier years I had perhaps more minor things, I lost sensation in one leg, no hot or cold feeling. Later I got Trigeminal Neuralgia, although no one would ever tell me it was that, I saw 4 different dentists and several doctors and it's only looking back I realise that's what it was, the worst pain I've ever known.

To be fair I have a lot of problems with my back and so when my fingers/ feet/ legs went numb they would put it down to that. When I got double vision, the scariest thing I've had, I was sent to the hospital but they just ruled out a brain tumor or diabetes. This passed after 2 months but really at this point my local doctor should have sent me to the neurologist but as the double vision had passed he refused. A friend of mine knew someone with MS who had been diagnosed after double vision and tingling hands/ arms and she urged me to get checked out as well. It was only after changing my doctor and writing a list of symptoms with dates that I got my referral and eventually my diagnosis.

Earlier on doctors said to me it can't be MS you would be having problems with your vision so when this happened I felt more confident in asking for a referral.

I should say I had got an earlier MRI scan done from when I'd had earlier vision problems that were dismissed as migraines which did show some lesions but having another one done several years later and the obvious contrast between the 2 must have helped in getting my diagnosis.

I really hope you can get a conclusive answer soon, I've been in limbo and it's very frustrating. I hope some of this helps you.

Izzy

[Dagun]

Hi Izzy, it is so good that you now know what you´re dealing with and that you´re getting treatment. And I´m sorry that it took SO long to find out.

I´m in limbo, for more than two years now. I would really like to know why your symptoms were not enough for them to find out sooner. Did you not have any of the typical symptoms, like ON or foot drop or? Sorry I´m just always so curios to find people with similar symptoms as I have.

Best of luck to you and stay around, there are so much help to get here.
Dagun