A bit of background:
I started fainting at 11 years old, diagnosed with vasovagal syndrome at 17, non responsive to meds so pacemaker implanted when I was 21.

Pacemaker didn't work and I still faint. I'm now 26 and a few weeks back I started to get double vision but we put that down to head trauma from collapsing. I saw a neurologist yesterday and he's a bit stumped, he wanted to do an MRI but can't because of the pacer so I'm getting a CT scheduled.

I work in optics and I've done a bit of research into what could cause double vision that shifts between eyes and gets worse as the day goes on, Myasthenia gravis seems to fit. Then I started to think more and realised that even with the pacemaker I always did sports but now I cant climb a hill without getting breathless, my knees and ankles hurt a lot for days after I've been out and I've been getting headaches and neck pains but I've put them down to the effects of the double vision.

I have allergies so I know my immune system is a bit mental, how do I bring this up with my doctor without sounding like a hypochondriac? I can't face being fobbed off for years like they did with my syncope.

I'm so sorry you're in this situation. You know from previous experience how horrible it is to have a real and serious illness and not be taken seriously. I can understand why you're trying to avoid going through that yet again. When I was undiagnosed, I felt like I could face almost any diagnosis--it was being dismissed or labeled neurotic that I couldn't face.

A lot of people here share this story: they couldn't get answers from a regular neurologist, but a neuro-ophthalmologist took the symptoms seriously and made a diagnosis with confidence, even if the blood tests came back negative.

MG often starts in the eyes. Sometimes it stays there. People who have only eye symptoms often don't test positive for the antibodies, at least not right away. But in this group, we have people who were diagnosed by neuro ophthalmologists just on the basis of symptoms, and others who are also seronegative (like me) who were diagnosed on the basis of a single-fiber EMG.

Double vision is a specific symptom, not a vague or general one like fatigue. I can't imagine a good doctor putting it down to hypochondria.

Abby

Sorry it was a neuro-ophthalmologist that I saw. In the 2.5 hour visit my double vision switched between eyes twice and it was a 10am appointment! He admitted that he's stumped but didnt order bloodwork to be done, just the head CT and see me in 3 months.

A member called Heat Intolerant posted on my user panel but I can't reply there cos I'm new so I'll reply here and hope the message gets to the right place. I'm in the UK and my dr won't deviate from midodrine for treating syncope even though it doesn't work for me any more! I don't have private because I was a child when diagnosed so no insurer will touch me!

I'm really not sure what to do. I was previously diagnosed with chronic fatigue syndrome but I don't suffer the effects of that any more. With CFS I couldn't get out if bed in the morning but this is different, I wake up fine then crash at 6!

Hi,

something else to consider is Ehler Danlos syndrome - this can affect your eyes giving double vision - I suffer with this and bilateral and unilateral ptosis. Info can be found on it here http://www.hypermobility.org/beighton.php have a good look through this site as it causes joint pain muscle weakness etc

Also have a look at this site http://www.dinet.org/ as breathlessness and fainting can be caused by something called postural orthostatic tachycardia syndrome which is caused by a dysfunction of your autonomic nervous system. There is also a forum on DINET where you can ask lots of questions and you would be surprised at how many members have been tested for MG before getting the diagnosis of EDS and POTS (they tend to run together)

Its just a suggestion as many people in the UK who have been told that they have CFS / ME when investigated properly actually find out they have EDS and POTS. So its worth looking at.

Hope this helps
Rach

sorry your allergies also could be linked to these conditions as a lot of people with EDS and POTS also suffer with Mast Cell Activation Disorder - again a lot of people on the DINET forum would be able to help you. Plus many groups on facebook.

Basically MCAD patients get a lot of "allergies" and react strangely to medications and can become dangerously allergic to things that they have had no problems with previously. If you are in the states you will find it much easier to get diagnosed than the UK.

Dinet have a list of Drs you can see, Vandy has a unit for autonomic dysfunction, Mayo are doing lots of research. Dr Brad Tinkle is an EDS specialist I think and theres stuff on Youtube about him and Dr Grubb is a POTS specialist.

I think it maybe worth your while checking this out?

Rach

While it probably won't help some of your symptoms, if you have bad allergies and got tired as a kid, you may have either a wheat allergy or gluten sensitivity/Celiac Disease.

There is lots of information out there about this - when our youngest daughter was diagnosed with Celiac Disease 4 years ago, we converted to a Gluten-Free kitchen. Within 24 hours, a lot of things that I had been having problems with started disappearing (allergies, arthritis, skin rashes, chronic fatigue). Turns out I'm allergic to wheat AND have Celiac Disease myself....

Many people with MG find some relief on a GF diet - it doesn't cure their illness, but it can make some of their symptoms less severe. Celiac Disease is also an Auto-Immune disease, and when you have one AI condition, you usually end up with a couple of others tagging along for the ride....

CD can be diagnosed with a simple blood test, and "cured" with a very simple change in diet. A person CAN test negative for CD yet still find significant health improvements on a GF diet as well (my husband is a case in point).

Thanks guys!

I definitely have neurocardiogenic syncope. My blood pressure and heart rate are stupidly low, even paced my heart prefers to be slow lol! It's definitely not POTS

I tested negative for Coeliac disease, had a biopsy done and it all looked good.

I've had hay fever since I was tiny but grew into a nut allergy (20 years old when that hit in) and then developed eczema that flares like crazy but no contact allergies except boron!

I got CFS at 20 ish too, the symptoms lasted around a year and then slowly I got back to normal. The doctor who diagnosed it was a bit of a Pratt and didn't allow me any treatment on the basis that I used to teach dance.

I dont have a posits but I have a twitch! The double vision is doing my head in, I've got a constant headache and my neck is killing me from constantly trying to see single. The specialist I saw yesterday said he can't correct it because it changes so much during the day that correction is impossible.

How do you all cope with double vision?

Hiya,

Have you done a poor mans tilt table test? Instructions can be found on Dinet - bit long winded to go through here. Dinet will also be able to give you advice about NCS etc its a great place for support. (as is this forum)

When the double vision is bad I just have to lie down in a dark room for 30-60mins and close my eyes to rest them. I find that really helps. If its not too bad and I know which image is the correct one I try and struggle on the best I can.

Sorry I cant be of more help.

Rach

I've had a real tilt test, that's what made th doctors finally believe that I really fainted!

Lying in a dark room isnt really an option at work and everything is in millimetres so really need to concentrate I'm not sure what I'm supposed to do for the next 3 months

Even if you tested negative for Celiac Disease, you may be gluten-sensitive.

The "eczema" that you have might actually be Dermatitis Herpetiformis - the "dermatological" manifestation of Celiac Disease. Unfortunately, the "test" for that may or may not come back positive (it's a skin test, but the person doing it has to know what they are doing).

If you have DH, you have CD (it is a 100% correlation). Many people with DH will test negative on the CD blood test (I did). For most people with DH, a "positive" diagnosis is made when they go on a GF diet and notice that their symptoms start to clear up. I had terrible skin rashes that wouldn't clear up with any treatment - within a month of going GF, they were significantly reduced. It was a happy surprise.... (I can always tell when I have been accidentally "glutened" - I start to itch like crazy!)

(Here's a great site with pictures of different manifestations of DH)

I had allergies my entire life - when I eliminated gluten from my diet, I noticed a few weeks later that I wasn't having them anymore (believe me, I wasn't even thinking about it - one day a light went off....). I have also found that the number of colds that I get has significantly reduced in both frequency and severity - I used to be guaranteed to get laryngitis every November/December (it got to be a running joke). Now? Not so much.

It's possible that the CFS you were diagnosed with in your 20's was actually an early manifestation of MG. I've found that "CFS" tends to be the "You're tired, but we don't know why and we've run out of things to test" diagnosis....