Please Help...Not sure what to do?!
 

Hi everyone - I am sorry to pester and I know I have probably asked similar questions along my way but I am just trying to piece everything together and work out my next move and could really do with your help/thoughts/advice!

I have had a reasonably good couple of weeks (which has been lovely!) its been a long road back from my flare up in February and I have been taking it slowly. I wanted to give the Doctors battle a break and just do my best with Mestinon as they don't seem happy to offer me anything more with having no tests to back up my Clinical Diagnosis...but I feel like I am on the verge of going back downhill and may have to reconsider that decision! It was half term last week and I had my girls off with me, (full of colds!) and whilst we didn't really do anything, I did end up arranging a couple of playdates and a trip to the park on top of what I normally do so, (as depressing as the thought is that something so simple could have had this effect on me!), maybe that explains things?! I hoped a couple of days rest now they are back at school might nip this in the bud...but so far it seems to be taking it out of me more than I hoped and I am having all of the symptoms I had before my last flare up :(

I wanted to ask what your honest opinion is on these symptoms - are they MG or the signs of a worn out body...or should I be looking at something else to explain this??

Here are the symptoms - I would be so grateful for any thoughts on what you think about them??

Headache - pressure type headache (similar to when I had viral meningitis) relieved by supporting head. Light and Strong Smells almost "go through" me and I want to avoid both!

Neck also aches later in the day.

Pale (Deathly at times!)

Loss of appetite

Nausea

Chest pressure and feeling of more rapid heartbeat on standing/moving around (thankfully it is pretty mild at the moment!) - relieved a little by sitting but lying down is better and a huge relief - being upright feels like a huge effort and the sofa is my friend!!

Blurry vision - worse than usual and reading/computer/watching TV feel draining/an effort and make the headache worse!

My Legs are always easily tired and become heavy with fluctuating problems walking, but when I soften my knees out of a locked position my thighs shake taking the weight of my body. They don't seem to give out on me and do actually hold me up but they shake and become uncomfortable/achey under the pressure? When I walk it is like there is no power in my legs??

All of this impacts on the Typical MG symptoms and makes my facial weakness worse. Since my last flare up I struggle with losing my voice the more I talk also.

Another point that I am struggling with is that Mestinon was a miracle for me for 3-4months but now there are times when it works and times where I'm not sure if it makes me worse!! I have gone down from 90mg to 60mg 4-5 times per day and while the dose works it helps my facial weakness but when it wears off I sometimes feel worse than before?! I don't know, I am just confused at the moment as to what to do for the best?!

I am frustrated and confused - I had just started to feel like I was starting to actually do a little more after my flare up and doing a little more, I was back at work 2 mornings a week and hoping to make it 3 mornings thinking I would soon be back to my 4 mornings a week (which I am meant to work!) I know this thing has its flare ups and I thought I was managing well but now I see that is probably because I've been doing very little! I feel torn - I want to get back to work and was trying to prioritise my energy for that....but then I have 2 young daughters who I am barely able to take anywhere/do anything with, and my boyfriend and I haven't had a night out in over a year...and I haven't seen my friends for longer than that!! I feel guilty wherever I turn and the realisation is hitting that mestinon isn't the miracle it was at the start and maybe I need to either write to the Neuro and plead my case...or go to my GP and see what they suggest...or push for another Neuro and get back on the merry-go-round all over again! UGH!

Sorry to rant and waffle on but I really am left wondering what is going on and what I should do! I feel like I am left trying to work it all out for myself with no real support from the medical profession!

Thanks everyone :)x

Go to the doctor, urgent care, or the ER. Some symptoms you are describing are potentially dangerous. It's time for a doctor—just go.

There's no way to tell what is going on because we aren't doctors. Even if we were, you have to be seen, examined, and have tests. Make sure they check your O2 because when the pulse goes higher with MG, it means that you might not be getting enough oxygen to your tissues.

I hope you'll be okay.

Annie

Thank you so much for your comment and advice. I wrote to my Neuro giving him one last chance...NOT that I am holding my breath on that one!! I also called my GP but he is on holiday and I can't get to see him until next week!! He told me to focus on resting and that we will intelligently sit down and talk this though to find a plan when he is back...he said I could sit in a room with 12 Neuro's and they would all have a different opinion on whether I have MG given my negative tests....which I do agree with! He says I am a victim of the system, a system the dr's themselves create (not quite sure what that part meant!) and its not fair to be lead up the garden path with a diagnosis only for the Dr to back off when the tests don't show what they want it to! He says we should perhaps try being less concerned about the labels and more concerned with getting me functioning...which is exactly what I want...but I'm not sure what he will be able to do/is prepared to do to get me there??! Again....I am not getting my hopes up!

What you say about O2 levels is something I have wondered about along with Low Blood pressure...but my hate of the Doctors visits always has my BP up and so it never really shows!! I have been looking it up and there are some papers linking autnomic dysfunction with it with MG written 2013/2014.....but also lots of people struggling to be diagnosed and palmed off being told they have anxiety - an anxiety about being upright?? That's a new one on me!! lol!! I brought a new finger Pulse Oximeter - my resting pulse is around 65 and sats seem to bump around in the 80/90's....but when I stand it struggles to keep a reading and the bpm looks to drop and then jump up to 90's and sats drop to the 60/70s?! I'm getting a cuff BP monitor to see if that can give me a clearer reading...as this doesn't seem right?!

Right now, the sofa is my friend (again!) and I am resting as much as possible and hoping to be back on my feet again soon :) Thanks again:hug:! x

Sonomagirl
 

You seem to have a lot of knowledge concerning MG. I am having my first of 5 daYs of IVIG treatments starting tomorrow. Was diagnosed back in November. Now on 180 MG a day of Mestonin and 180 MG of Mestonin timespan at night.
What should I expect tomorrow with my first treatment? Any suggestions or recommendations when it comes to the possible headaches etc.? Anyone with advice please comment.

Drink lots and lots of water then some more the day and morning before. You may want to ask the nurse to make the rate slow for first treatment. They should check on you every 15 min during first treatment.
Mike

Sonomagirl
 

Thank you! Really did not know what to expect since this has all been set up so quickly. I will let you know how it goes. Thanks for your input!
Debbie

It is really not bad. My treatments take 2 hours but yours should be longer until they figure out your rate. The infusion center where I go have nice recliners, each chair has a TV, they have snacks and provide lunch depending on the time. Be sure to call about 30 minutes before you arrive so they will have the medicine ready which will save you some time. Hope all goes well.
Mike

Sonomagirl
 

Thank you for the information. Today went very well. The facility was just as described and everyone was very nice. I learned that they actually have several people with MG that they serve. Today took around 3.30 hours total. They like to do a very slow rate the first go round. They administered 2 Tylenol and a benyadril then waited about 20 minutes before starting the IV. No side effects apparent and ready for day 2.
Thanks again!
Debbie

That's great news. I learned something new today. Went to see my neuro-muscular Dr and told him I had a 100% artery blocked in my leg. He said "NO IVIG FOR YOU" so now I got to decide on a by-pass. Need to discuss this with my regular neuro. I now wonder if all the IVIG's caused the blockage.
Mike

Sonomagirl
 

I had read where blood clots are not uncommon but a total blockage?? Are they going to try blood thinners?
I had a small reaction yesterday so they lowered the rate today. All seems good.
I sure hope that they can do something other then surgery. I wish you well! Keep me posted.
Debbie

I'm going to see my regular neuro soon and we will formulate a plan. Right now I don't need IVIG. My last was in Nov.
Mike

Unsure, Those O2 numbers are not normal. A tilt table test would be the only way to determine if you have POTS or some other autonomic issue. HOWEVER, if the cause is not that and you have some sort of circulatory or heart issue, that would not be the first test to have!

A pulmonologist can do an overnight oximetry on you. You take home a monitor and do the test at home. I would highly suggest that you get that done right away!!!

You are not getting good doctoring. You need to be aware of what is going on and get the appropriate treatment(s) soon. This is just crazy.

You can do an in-home test on your BP. Lie down for a few minutes. Take your BP. Then slowly stand up and take your BP. Then take it again a minute later.

Orthostatic hypotension: The systolic number (top) drops 20 or more upon standing.

Orthostatic hypertension: The systolic number rises over 20 upon standing.

Don't do this too much, okay? Once is enough. And track what your pulse does as well.

Mike, So, were you referred to a vascular surgeon?!! Geez, did they even check for a clot, either with blood tests and/or an ultrasound? Have they checked you for antiphospholipid antibody syndrome or any of the other ones? 100% blockage is damn dangerous!!! I'm worried about you. Stay hydrated. :hug:

Debbie, I'm glad you got some feedback here. I hope IVIG continues to go well. You might want to start a new thread if you have specific questions about a topic, so that you don't get lost in someone else's thread.

Annie

Annie: I was having cramp like pain in my left calf. My GP decided to do the ultrasound and found an artery with 100% block above the knee. He and I discussed and decided if it wasn't interfering with my daily life to let it go. He did talk about referring me to a vascular surgeon. He nor I knew about the complications to my IVIG treatments. He also told me if they put a stent in it that the blockage would likely return. I'm going to discuss my options with my regular neuro who is not aware of this development.
Mike

Ellie,

I was going to say the same as Annie, the heart rate and palpitations sound like postural orthostatic tachycardia syndrome / orthostatic intolerance / autonomic nervous system dysfunction. Do you have a bp cuff that also measures your pulse because I would suggest you carry out a poor mans tilt table test.

Lie down in a semi dark room for 20 mins, no music or interruptions. Take your pulse and bp reading after 20 mins. After that stand up straight, keep legs straight and keep movement to a minimum. For best results stand against a wall - but don't walk! Measure your pulse and bp at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 mins. If your pulse has risen above 120 beats per minute / or increased by over 30 beats per minute from your base measurement - from when you were lying down then you have postural orthostatic tachycardia syndrome, also known as PoTs.

For more info head to Pots Place also known as DINET where they have lots of info on PoTs and autonomic nervous system dysfunction plus a great forum where people will be able to give you lots of advice.

After you have done your poor mans ttt and if the results are positive contact your GP and ask to have a proper tilt table test. If you are in the UK there is a charity called STARS that can help you and POTS UK that will also help. STARS have a help line and are very good.

I hope this helps, as you can see from my signature I am no stranger to PoTs or ANS dysfunction.

Rach x