I feel completely confused. I’ve been treated for what I believed was seronegative mg for the past 13 years. Today, I met my new (new) neurologist, who spent time going over my past medical history, examining me physically with strength tests and reaction tests and who then informed me he isn’t convinced I’ve got mg after all and that I may have something called Chronic Fatigue Syndrome (ME).
He believes my mg diagnosis was uncertain from day one, as previous blood tests for acetylcholine were negative, as were single fibre EMG. He wasn’t interested in a mildly positive tension test I had done way back when, as he said he wouldn’t use that now to diagnose mg (something about it being too sensitive maybe? I can’t recall what he said). Or that I’ve had generally good results until very recently with mestinon. He was more interested in previous medical history of recurrent blood clots, a car accident I had nearly 20 years ago that gave me neck, back and shoulder injuries and hormonal/ psychological factors (these were the reasons he felt lead to consider CFS/ME as there is a link between this and previous viral infections and psychological traumas, of which it turns out I have quite a few, to include loss of a parent as a child, serious health issues as a young adult, miscarriages and car accidents plus the loss of a business to name a few).
This is a list of symptoms for CFS
The main symptom of CFS/ME is feeling extremely tired and generally unwell.
In addition, people with CFS/ME may have other symptoms, including:
•muscle or joint pain
•sore throat or sore glands that aren’t swollen
•problems thinking, remembering or concentrating
•feeling dizzy or sick
•fast or irregular heartbeats (heart palpitations)
CFS is considered if you have 4 or more symptoms off this list. Other than being tired (and fatigued), I do get headaches, but these are related to the damage from too many car accidents, I do get palpitations (as Ive written about in my blog from the two lots of cardiology tests I’ve had done), I do have sleep problems (it has a name and is 6 months old!), and very occasional dizziness. That’s it.
Now here’s a list of the more common mg symptoms
Droopy eyelids – I have this
double vision – I occasionally have this
problems with chewing – not really a problem
and difficulty swallowing – I occasionally choke (about 5 times across a week)
slurred speech – occasional
husky, quiet or nasal-sounding voice – I do get this every day
weak arms, legs or neck – all of these every day
shortness of breath – daily
occasionally serious breathing difficulties – no
difficulty holding the head up – yes
difficulty with physical tasks, such as lifting, (yes, I don’t bathe my baby on my own) getting up from sitting to standing (yes, getting up off the floor involves a crawl to the nearest piece of furniture to balance against), climbing stairs (yes, I’ve been known to go up on my knees and down on my bum if I’m carrying my baby), brushing teeth or washing hair (yes, I just don’t have the energy to wash my hair and leave it as long as I can before tackling the task)
a waddling walk – yes!
aching muscles after using them – all the time.
So maybe you can see why I’m a little confused? How is that not a picture of mg? What exactly do I have to have to be mg and how is that closer to CFS than mg? I just don’t get it.
Anyway, had bloods done. Redoing achr and testing LRP4 (some mg specific blood tests), plus talk of referring me for ‘exercise therapy’ as a treatment for CFS (please bear in mind two years ago I climbed snowdon and walked 5 miles three times a week – it’s been a fairly rapid decline in mobility and severity of symptoms). I’ll also be getting a ct scan done once I’ve finished breast feeding my son (so approx March 2018).
So as it stands, I may or may not have mg and may or may not have CFS/ ME.
I suddenly feel very lost.