rach73

Hi all,

sorry I have been missing in action for a bit. Im ok just no energy and EDS is being very horrible to me at the moment!

The EMG or SFEMG is the needle test - where they stick pins in you and send an electric current through it to see how your muscles respond. Its considered by many neuros that this is the gold standard test to prove a patient has MG. Very slowly this idea is starting to change as many people with positive bloods test negative on this test and ocular MG up to 50% of patients test negative on this and blood tests. Ive had 4 SFEMGS all very painful all showing nothing.

Side effects from Mestinon. Remember this SLUD its stands for the side effects which are Salivation ( so it can make you drool),Lacrimation can make your eyes run with tears, Urination (it makes you pee),Defication - it makes you poo, either the runs or it increases the number of bowel motions you have.

Its prescribed for POTS and low blood pressure as it increases blood pressure on standing, but not supine. So you may still get low blood pressure when sitting or lying down.

I get stomach problems with mestinon as it causes me to have the runs and stomach cramps. On a very bad day I will also drool and vomit. However it works wonders on my muscle weakness and ptosis.

Rach

Hi

MG is the wonderful auto immune disease Myasthenia Gravis, hence why my blog is called the myasthenia kid.

The disease makes the patients body attack the acetylcholine receptors on the muscles. Mestinon give the body extra acetylcholine so the available receptors can pick up more of this chemical. Main symptoms with MG are ptosis, muscle weakness, choking, swallowing issues, fatigue and breathing problems which can lead into what is known as an MG crisis, where patients become too weak to breathe. For more info I've added the link below.

http://en.wikipedia.org/wiki/Myasthenia_Gravis

that will give you more info. In the USA its MG awareness month so we are doing our bit!

(still on the oxygen, breathing is better after 60mg of mestinon but stomach is cramping. You win some you lose some)

Rach

My worst symptoms

1. Feeling constantly like I am coming down with the flu. I can't actually remember anymore what it feels like not to be sick.

2. Light headedness / vertigo so you can't even move your eyes without the room spinning.

3. fatigue / exhaustion. You've slept 12 hours and you are still tired.

4. cold hands, my finger nails turn blue and my hands throb with pain.

5. Only feeling ok if I am lying down flat. Bit difficult to live your life that way.

I have tonnes of other symptoms like pain but thats the EDS or being so short of breath you spend hours on an oxygen concentrator so you feel like you can breathe but thats probably undiagnosed maysthenia gravis.

Rach

Hiya,

I'm in the could have MG camp also, I have been for 4 years. I have ptosis unilateral and bilateral, I have shortness of breath, problems swallowing and choking, I also get double vision and blurred vision. When I take mestinon all these issues resolve apart from the double vision and blurred vision. I have had countless negative blood tests, one positive tensilon test, one negative tensilon test and every ice pack test I have is positive for MG. All my SFEMGS were normal.

I am typing this hooked up to my oxygen concentrator (as I have been most of the day). This week has been the week from **** for me as I have had awful ptosis and breathing problems. I take mestinon very sparingly maybe a couple of times a month as I really do not tolerate it very well. I get awful stomach cramps etc

When I take mestinon I feel really good I have more energy, I don't feel as dizzy standing up and it generally makes my POTS symptoms lessen, its just I have mega side effects from it. Most people with POTS take 60mg 3 times a day, although I would start on a much lower dose and gradually build it up as if you do get the side effects it can be nasty.

The reason I take mestinon so sparingly is I really suffer, so I only take it when I can't see or I'm having problems breathing, like today. Unfortunately everyday this week I have had to take mestinon and my stomach is raw. There are drugs such as propanthaline you can take to minimize the symptoms, its just I have gastroparesis and can't take them as they slow my gut down, causing me more problems.

Mestinon is brilliant if you can tolerate it, it definately helps with my POTS. If I could take it regularly I would but we just dont get on.

I hope this helps

Rach

Hiya,

Nightmares can be caused by a build up of CO2 in the body if you aren't breathing properly during sleep. It maybe worth getting a sleep study done to see if this is what is happening in your case.

Rach

Hi,

I always find it strange that the studies never tell us the selection criteria for participants in Levines clinical trials.

Is it people with POTS caused by pregnancy, a virus, surgery or someone like me who has probably had it all my life? Do the patients have any other illnesses or is it just primary POTS.

The report again leaves me with more questions than actual answers. Plus after all the tests I have had Ive never been told that my heart is too small. With walking more than 20 miles a week before I became ill I thought it might have been something I would have noticed. *sarcasm alert*.

Rach - sorry could be the morphine is enhancing my sarcasm output today! LOL

Hi,

I swing both ways lol! When everyone is freezing I a in a t-shirt and opening all the windows. When everyone is complaining about the heat my hands are blue and I shiver with the cold.

My husband calls me the lizard because like you I only ever feel warm if sat in the sun! I have to have direct heat applied to my body to make it warm up. Ive always been like it although its getting worse. Even lying in the sun I will be in a thermal vest, t-shirt, sweatshirt and a blanket over me. It takes hours for me to feel comfortably warm. It seems like theres no halfway where I actually feel the correct temperature.

Its an ANS fault and my sister suffers with it in the same way.

Rach

Hi,

When I had my fasting glucose and cortisol levels done I was told not to eat after midnight (makes me sound like a gremlin lol). With having my evening meal at the latest of 7pm, it meant I hadn't eaten for 14 hours. I think they like it to be at least 8 hours without eating, I was allowed clear fluids at this time.

Hope this helps

Rach

Hi,

I am still on florinef at present but would happily stop taking it as its done absolutely nothing for me since taking it.

I am getting a headache everyday. Ive had two migraines in two months I average about one proper full on migraine a year (I am very lucky). My blood pooling has got worse, theres a good picture of it on my blog - one foot is blue one foot is pink! My BP isn't rising Ive spent the last weekend having to lie down as every time I sat up or turned my head I was seeing stars. I am still urinating excessively. I am disappointed to say the least.

I am on 200 micro grammes a day.

Its made no difference to my fatigue levels but then I have EDS as well so wasn't expecting miracles.

I really hoped it would help.

Rach

sorry hun wish I could make it stop!

Hi,

Since being on florinef I have a constant urge to go. I upped my tablets on Thursday and its been even worse. I dont have a UTI, it just seems I am not holding onto that much water!

Rach

Hi,

Just thinking could you have an inner ear infection on top of the POTS. Are you feeling dizzy or is the room actually spinning?

Try some travel sickness tablets if you can tolerate them and see if that helps.

Rach

Hi,

Yes I have a blog called themyastheniakid. I have been doing it since 2008 but its only been since this year that I have been writing on a regular basis. Its about life in general, life dealing with chronic health issues and the idiot Drs and health professionals I have seen over the years!

The address is in my signature, on my blog I also have links to a couple of other Potsie peoples blogs.

Rach

(((((hugs))))

You are allowed to get upset with it all. I remember when I first got ill and a dr told me I would be right as rain by friday. I assumed he meant Friday 12th January 2007 as that was the week I saw him! LOL I'm still waiting for the Friday and I wont give up hope that it will come one day.

I wish there was more that I could add. Hang on in there.

Rach xx

I believe I have had POTS all my life but it was just very mild.

Over the years I would have periods of tachycardia and lightheadness which would come and go. I had a few faints also which I couldn't be bothered to get investigated I was too busy.

In 2002 I noticed that I had become very heat intolerant but most of the time felt freezing cold. Then in 2007 after a really bad migraine I developed Ptosis and full blown POTS. Weird combo.

All this time I was working in retail nearly twenty years in total, nothing remotely connected to my degree in history! I loved my job it was my life.In my last position before I left I ran a team of 130 people and we had sales of over a million pounds sterling a week. It was a very stressful job which became more stressful when I was struggling to do my job due to being unwell and having no support from my colleagues or senior managers. I was bullied relentlessly for 12 months until I collapsed in 2008 and I haven't worked since.

I actually miss working dreadfully and its taken me a long time to accept that I can't. I feel guilty and find myself thinking if I wasn't so lazy and pushed myself I would be able to do it. I know in my heart this is a complete lie. But I feel like I contribute nothing to the world. Its a hard feeling to shake.

Rach

Hi Mwise,

Thank you for taking the trouble to post all of that. Its very kind of you.

Rachxx

Hi,

I am sorry you have had the misery that is gastroparesis. The drs are just starting to take me seriously over this as they want me to take their medications but I can't due to the tummy troubles. Hopefully if they all get together and start talking to each other I may get some proper help.

The domperidone helps, but I still feel full and nauseous pretty much all day. Just feels likethe food is stuck there is my tum not going anywhere. But I guess you know that feeling.

I have the hospital again tomorrow with my Pots drs and the private dr is going to contact them to discuss things.

So fingers crossed

Rach xx

Tinks,

ditto that! You need to go back to the dentist. Dry sockets can lead to an infection of the jaw bone - I had one and you don't want it. It was months of antibiotics!

It shouldn't be hurting hun.

Hope it gets sorted out

Rach

Hi

Thanks for your replies.

I had a hospital appointment today and I finally got diagnosed with EDS type 3 Hurrah!!!

I saw a rhumatologist who was actually quite helpful on the gastroparesis front and is contacting my other drs about my medications for sickness. Plus changing pain killers to patches so I dont have to eat before I can take them.

It was me who suggested to the GP about milkshakes as I needed something I fancied - I can't stand plain milk but I can drink milkshake. It was a question of getting some fluids and calories into me without making me sick. The milkshake worked, but I can't live on milkshake.

I had managed to drink enough fluids not to be dehydrated but when you drink at least 3 litres a day having a lot less than that the POTS notices!

I'm in the UK so it would mean a hospital stay for IV fluids and I can see pretty much only the Dr my GP refers me to.I can ask for a referral to see specialists in London but the GP will probably say no. I had to pay privately for the appointment today £250 - and no insurance.

The GP that saw me on Tuesday wanted me to cut down the domperidone in case it was the gut contractions making the pain in my stomach worse after it hadn't been moving very well for a period of time. Its either worked or coincidence as the pain has lessened. I am to slowly build it back up again.

I have managed to eat a little something today, I tend to try and stick to dry crackers - we don't have saltines in the UK. I have managed more fluids. I have been quite lucky as I haven't been vomiting a lot, its just the incredible nausea and then if I think about food my throat starts closing up - I think some of this is mental now as my brain is associating food with vomiting. The vomiting will get worse as the flare continues, at its worst it will be several times a day.

I am in a flare up at the moment and this will now last for months its just it has never come on this quickly before. I am back to only being hungry at gone 4pm and only eating small amounts as I feel sick so quickly. I am losing weight about 3lbs since Monday, give it another 14lbs and I will be overweight and not obese. The only upside of this condition for me. (sorry my sarcastic sense of humour). Not bad when you think I am on florinef and should be putting on weight with water retention.

Im sorry my first post was a mess as I wasn't thinking clearly and I may have given the wrong impression. Its a bit of a mess my medical situation as I have changed GP practice in March due to my previous Drs complete lack of action on anything. My new GP is now just trying to catch up and get on top of things.

Thanks again for all your support and suggestions.

Rach xx

Hi,

I finally got diagnosed with gastroparesis last week. I didn't have any emptying studies done the Dr just accepted that my ANS is screwed and it was obvious that my vomiting undigested food, pain, bloating and loss of appetite are being caused by this. I also got diagnosed with IBS again caused by ANS dysfunction. I got told to up my domperidone to 20Mg 3 times a day and they would see me in four months.

At the appointment I was told if your condition worsens get your GP to contact us. I told the Dr I was starting to go into a flare up where I can't eat / drink etc and the domperidone wont help. He just repeated to contact them. So hear I am less than a week later struggling to eat and drink due to nausea and vomiting. Don't get me wrong its a great weight loss plan, but I feel like death warmed up.

I was in so much pain today my GP came and did a home visit. She wants me to cut the domperidone dosage in half and see how I get on. At the moment I can tolerate milkshake, but I know it will only take one vomiting session with milkshake and I will be off it for life. Yesterdays calorie in take was around 200, todays is better at 600, but no where near enough.

My problem is a lot of my meds florinef, naproxen rely on me having food to take the tablet. Florinef is now being taken anytime after 3pm. I am struggling to drink and I am definitely not getting enough salt. I feel so weak and my POTS is going crazy, my blood pressure is dropping where as it had been a respectable 155/75.

I can't take eurthromycin (sorry about the spelling) it makes me ill (horrendous stomach cramps etc), Reglan makes me a complete space cadet and gives me muscle spasms. Does anyone know of any other treatment?

This Dr is taking me seriously when I say that I can't eat unlike my last GP who chose to ignore it despite me losing over 30lbs. I am a large lady though at this rate I wont be, I don't want to end up on a feeding tube or having a gastric pacer - although I think I am quite a way from there at the moment.

Does anyone have any suggestions as even the thought of food / smell of food is making me gag.

Thanks

Rach

Hi,

Just wanted to add that I suffer in the same way.

My BM were normal and regular until 4 years ago, I would go three times a day regular as clock work. Then that pattern stopped, so I go once or twice a day and then a few days later I will be woken at 4am with really bad cramps and I will pass 8-10 BM between 4am and 11 am. Its exhausting and painful as I have a prolapsed bowel (very small) and this aggravates it. I end up taking loperimide or codeine to stop going.

I saw my gastroenterologist last week who diagnosed me with gastroparesis and Irritable Bowel Syndrome. I questioned the IBS as I do not suffer with diarrhea or constipation, just the cramps and the excessive need to go. He told me what I have is a type of IBS which is being caused by my autonomic nervous system just going off and doing its own thing. To me it makes sense.

The autonomic nervous system controls heart rate breathing and digestion, so why wouldn't my digestion be screwed up. The doc explained some days the messages are being transmitted normally and then other days it miss fires.

I am beginning to think that POTS doesn't really come close as a name to describe what people like you and I suffer with when our autonomic nervous system decides to go nuts. I am really starting to think its like we have had some sort of autoimmune attack on our ANS.

Thats my ramblings for today.

Rach

just seen the mistake in my post and it looks like I had verbal diarrhea! It should say "vomit, drool and have diarrhea"! I was put on propanthaline which mildly reduces my problems with it. I don't take the propanthaline now as I have problems with bowel motility.

I think getting a mito diagnosis in this country would be like finding a pot of gold at the end of the rainbow! I will never give up trying to work out what my complex medical problems are.

Rach

Hi

I have found this thread extremely interesting as I also have ptosis daily. When I am ill with a virus on top of the pots my ptosis becomes so bad that my right eye completely closes and the right side of my face sags. If I am really unlucky as I was on Sunday night my left eye will close as well leaving me virtually blind.

The only thing that resolves this for me is mestinon. Initially I was diagnosed with MG and then a year later the diagnosis was removed and I was accused of actually making my face and eye drop for attention! I still take mestinon for ptosis but I have never really got on with it as it causes me to vomit and hdiarrhearhea.

I also get double vision when I am tired.

I never tested positive on the anti bodies or the sfemg for MG, but then if its ocular the chances are I wouldn't.

Its interesting to see there is a mito link as someone else off the forum has suggested that to me.

Thanks for the info

Rach

hi,

I am losing my hair but I'm not on either of those drugs. I just put it down to dysautonomia.

Rach

Hi,

If I aparticularlyly bad my heart rate will increase on changing position in bed.

It always increases on sitting up. From lying to sitting I can go from 70 bpm to 130 bpm, in hospital I am always setting the alarms off on the heart rate monitors for tachycardia - just no one ever took any notice of them. That really annoys me as all the evidence was there before them.

If I hadn't off found this forum I would never have known about POTS and been written off as a nut job.

Rach