Therapies to relieve symptoms
Hey everyone, I'm looking for some therapies that might help relieve some of my symptoms.
For a bit of background...
I'm 26 and recently diagnosed with Myasthenia Gravis, whilst my doctor isn't 100% certain (slight raised anti-bodies but negative in other tests and my some symptoms present as classic MG, some don't).
I've recently been prescribed steroids, but very apprehensive to start taking them. I can just about continue with day to day life a the moment, although difficult and all exercise activities I can't participate in anymore, it doesn't quite feel worth it to go on the steroids just yet; So I'm trying to manage my symptoms as best I can for now.
Which leads me onto looking for alternative therapies that may help relieve symptoms.
I did reflexology for a bit after my grandma (who has Lupus SLE) recommended. But I didn't really feel any benefit.
At the moment my symptoms are:
-Tired eyes/struggle to focus (migraines accompany this)
- cramps in my hands and feet, mostly the fleshiest parts (thumb area and sole of my feet and fingers)
-Weak arms and forearms, especially after doing anything heavy
-difficulty with chewing (my jaw is very achy and stiff all the time)
-General stiffness
-General fatigue
And just generally fed up and disheartened... Wanting to put a bit of time into loving my body and appreciating what it can still do.
Any help/advice would be super helpful.
Unfortunately, this is an area where the patients sometimes are ahead of the medical teams. My hubby's family from northern Scandinavia has lupus, ALS, severe arthritis, MG, and heparin allergies. He has the last two. His first medical team said it was not genetic! We had a friend who is from Lapland who was feeling really bad after Heparin in a hospital stay (and MG). We told him about the 9 embolisms hubby got from Heparin. He went in and had 16. Saved his life.
Abbie, get a swallow test. Hubby was getting repeated bouts of aspiration pneumonia. It's not choking so much as "leaking." He doesn't swallow food anymore. Six trips to intensive care were enough.As you may already know, myasthenia gravis is a complex autoimmune condition. It is really unwise to do "diagnosis by survey." If you have a good neuromuscular doctor, he/she will prescribe a course of treatment that can be evaluated. I am a fan of alternative medicine in many situations, but in this case it could make you a lot worse! If the problem is autoimmune, the steroids will prove the case. Find a doctor you trust and follow the course. (Just a note; Autoimmune conditions can run in families, so your clue about your grandmother should be shared with the doctor.) Untreated, myasthenia gravis can lead to aspiration pneumonia and other complications. Go with the science, not surveys or grandmas. Juliana (team member).
thanks for taking time to reply. I have brought up my family history of Lupus SLE several times with my doctor, my nan has 8 siblings, 4 of which also have Lupus SLE. They all actually donated their genetic information to science and played a contributing factor in Lupus being recognised as hereditary. I've tested negative several times myself, but it's very likely a contributing factor to my auto-immune condition.
But because I'm seeing an MG specialist, they keep telling me to go back through the NHS system with my doctor to explore that route (I'm in the UK so it's a bit more of a complicated diagnosis path that one doctor). I'm only apprehensive to take the steroids because my doctor wasn't also convinced I should take the steroids and day-to-day capabilities seem okay for the time-being, just not the same as when I was completely able-bodied. What does ''diagnosis by survey mean?''?
But thank you so much for your advice, it has made me feel more at ease with starting steroids, which I'm sure will come in the next month or so.
Hello
thank you for taking the time to connect with us. We're close in age so hopefully we can relate although the way we experience MG is different for everyone. I'm 28 and I got diagnosed at age 17.
Here's an article from the site you can read:
https://myasthenia-gravis.com/physical-occupational-speech-therapy
(copy and paste to the search engine)
Sadly with MG the more you use and exert your muscles the more fatigued you become. Rest is honestly your best friend. Learning and understanding your body's physical capabilities is key. Sometimes the hardest part is listening to your body. What I mean is when I see you're unable to physically do something. STOP. I recommend making a list of things you do throughout the day and take note of how each activity made you feel, how long it took you to do it and what symptoms arose from it.
For the cramping in your hands you could do simple hand stretches and massages. The stretches can be as simple as opening and closing your hands repeatedly.
For chewing and stiffness in your jaw. You might want to switch your diet to soft foods. It might look funny but you can also try yawning when your jaw muscles become stiff.
I hope this helps. - Jazmin (team member)Thank
for the tips, I think I'm just learning to rest up and not overexert myself, as much as I want to just finish what I'm doing and keep going. Thanks for sending through that link, I did consider getting a specialised PT to help keep me fit. I read that after a couple of years when symptoms have peaked, it's best to keep as fit as possible to ensure your muscles are strong.
For the time-being I'm still a able to eat chewy foods but with an achey jaw at the end, but if that progresses I'll defiantly look into speech therapists. I didn't actually realise how much a speech therapist covered.
