When I say new...I actually mean I am not the only one now who suspects I have this condition. I am still awaiting the results from a blood test. I believe I acquired this condition around the same time I had a pretty bad chest infection. The ptosis and double vision were quite pronounced with the right eye closed completely. I also had a weakness in the throat muscles especially around the larynx which caused me to have a very gravelly voice. Originally the optometrist thought the ptosis and right eye weakness was due to a blood clot in one of the small veins that supply blood to the optic nerve. A CT was inconclusive, however, what was overlooked which had profound implications at a later date was the presence of an infarct which showed I must have had a stroke sometime in the past. This was not brought to the attention of my GP. Just over a month ago I was admitted to hospital with a suspected stroke, the left side of my face, especially around the mouth, had lost muscle control so I was unable to smile. There was also weakness in the jaw muscles. The stroke consultant has suspected myasthenia gravis and I have been tested for it, I am awaiting the results. I now have weakness in the neck muscles which gets worse as the day progresses, this is also in tune with my ability to swallow which also gets worse as the day progresses.
New to this condition: When I say new... - Myasthenia Gravis...
New to this condition
I have just had the condition confirmed and will shortly begin long term treatment with Pyridostigmine.
Pyridostigamine is not a treatment therapy - it provides short term symptom relief for 3-4 hours. How are you getting on with it?
What sort of Myasthenia have you been diagnosed with? How symptomatic are you?
At the moment pryridostigmine is my only treatment, thankfully I am getting longer than 3 - 4 hours relief. I have both ocular and general myasthenia. So far my limbs are unaffected. Upper respiratory tract, throat, and jaw as well as duplopia: When I go into crisis; it leaves me with dificulty breathing, swallowing, chewing and talking.
A crisis can be very scary & it’s not something to cope with alone so always go to the A&E and show your Myesthenia card. It’s only happened to me x3 & I’ve got an amazing GP who just talked my husband down from his anxiety so he got Pyridostigamine into me and onto my CPAP pronto and that did the trick.
It’s good that you are tolerating the Pyridostigamine and getting more than 4 hours relief, I rarely get that. I assume by saying generalised Mg you mean you tested serum positive for the AChR antibody? There are 4 known antibodies & different types of Myasthenia but everyone’s is SO individual anyway.
I take Mycophenolate as immune suppressant, thankfully my neurologist wants to keep me off steroids, and although it took a long time to kick in - about 6 months - I have gradually stabilised although it took about 3 years. I am currently trying to reduce my dose of Mycophenolate as I am back down to 3-4 Pyridostigamine bd but in flare I am back up to 6 quite quickly! I just had a pacemaker revision so still recovering and my CRP levels continue to be elevated so needless to say I’m not great at the moment.
Are you seeing a specialist neurologist? The treatment we get tends to rely upon the knowledge and experience of the neurologist and that often depends upon where you live. I’m in the SW of the UK.
Best wishes CD
Thank you CDreamer, I'm not sure of my neurologist's full credentials, however, I think she is capable enough. Because I also have Lyme disease and Lupus anticoagulant treatment is not going to be easy. Yes I tested positive AChR. At the moment I am in Limbo as far as other treatmetns are concerned as I am not officially on an outpatients register so until my next Crisis there is a kind of status quo.
You are coping with a lot and as soon as you get more than one condition, everything gets a lot more complex because the treatments for one condition are contraindicated for another, I found.
Have you been on the FB page? There are a few people on there with both Lupus and Mg.
I do a bit of unconventional medicine and one of the therapies I did was HBOT - Hyperbaric Oxygen Therapy - breathing pure O2 under pressure. A LOT of the people I met were doing the therapy for Lyme Disease, which can become chronic. Many, but not all, found it helped a lot. The theory is that the bacteria cannot survive in the cells saturated with O2. My husband was in the diving industry and Prof James - who did the original research for medical HBOT - worked for the company my husband did. I found it helped me generally, especially with eliminating brain fog and improving energy and took my sats up to normal levels, I have arrhythmias which meant my base line sats had dropped but it didn’t do a huge amount for the Mg I don’t think.
Subsidised HBOT therapy is available through the MS Centres in the UK as it is a proven therapy for MS.
There are also various herbs which can help to control Lyme but once it’s chronic ie - not treated with antibiotics within 3 days of original infection it’s unlikely you will ever get rid. It’s rampant in US and seems to be taking a good hold here in the UK.
Hi all, it has been over a year since my last post and a lot has happened. I suppose I have now become a medical phenomenon because I do not conform to the edicts that the medical profession seem to put so much faith in when it comes to dealing with conditions such as Myasthenia gravis, Lupus anticoagulant and Lyme disease. I allowed myself to be persuaded to take Prednisolone to help with the Myasthenia, Mestinon was simply not enough. There is always a price to pay when taking steroids after all they are intended to suppress the immune system so the least you would expect is that you would be more vulnerable to infections. Within the spacw of a couple of months I had at least 2 bacterial infections and I was admitted to hiospital twice.....You see steroids are not really an answer because getting bacterial infections can be just as dangerous and lead to exactly the same outcome that they are supposed to reduce. Something else happened too as a consequnce of taking steroids, for the best part of 2 years I was in remission from Lyme disease, apparently any Borrelia burgdorferi sl had gone into deep hiding or had metormorphosed into cyst form and thus avoiding the immune system. As my immune system was now being suppressed, it created the ideal conditions for Bb to come out of hiding and re-infect once more. I had spent the best part of 3 years trying to build up my immune sysytem to fight Bb and other invaders and I had succeeded. Bb have the ability to suppress your immunbe sysytem to help make your body a more hospitable place in which to thrive, they also have the ability to manipulate your immune sysytem too, that is why research has determined a link between Lyme disease and autoimmune disorders. I was in no doubt that Lyme disease had returned, therefore there was a very good chance that Bb could also be suppressing my immune system, if that was the case what would happen if I stopped taking my Myasthenia medication, an inccident happened, I will not go into detals, so I decided enough was enough, if the Good Lord chose to call me , then let him call. On February the 11th I stopped taking the prednisolone and the mestinon completely and at once. If my theory that Bb can and does suppress the immune system was wrong then I would be in real trouble and would surely go into crisis. This is what my MG practitioners were anticipating would happen. Nearly 3 months later I am A-symptomatic, I may still carry the antibodies but I do not have the symptoms. It is still possible that MG could return, however, for the time being, I am happy to be in remission. As for any Lyme infection, the symtpoms are neglible. I cannot say that life is much better than before, this is because I have COPD, it has been putting increasing strain on my quality of life.
general anaesthesia