Questionable advice
 

I have just had a call from the Respiratory Physio who I have never met. Although not diagnosed, there is a suspicion of MG or associated condition (I already have Luous/UCTD). I have weak respiratory muscles, in particular the diaphragm with fatigability.

She gave me plenty of advice; try to gain a few pounds (weight) as my BMI is 18 and do more exercise! I already keep active and walk my dog for 2 - 3 hours daily although this can be an ordeal. She wants me to add cycling/swimming or interval training to my day! I tried to explain that I could no longer sustain increased exercise or pace but she was adamant. I felt stupidly tearful after this conversation as I have always been madly energetic until my fitness has been gradually taken from me. I feel really disheartened especially as the physio then went on to tell me that there was nothing she could do to help . .

Clare, This is a TECH, correct, and not a doctor? Is this person directed by a doctor?

To tell someone who is suspected of MG that they need to do more physical activity is tantamount to a telling a diabetic to eat more sugar.

Do not allow someone else to tell you what to do! This person obviously does not understand your situation.

Who is overseeing your care? A primary care doctor/internist?

I think you need to report what this person wants you to do to the doctor who suspects that you have MG.

I'm really sorry that you are not receiving optimum care as of yet. What can we do?

Annie

Reply for Annie
 

You're so supportive Annie, thank you.

The physio phoned me following discussion with my resp Consultant. He feels that my onset of weakness 18 months ago is dietary related but neither my diet nor my weight have changed for 20 years and this does not explain the intermittent nature. The physio/technician is wanting me to exercise harder to build up my resp muscles. She didn't get that exercise used to be like a drug to me and now I just can't do it. . .Too much exertion can leave me struggling even with the weight of a t-shirt on my chest and that's not nice. I'll get over it but right now I feel misjudged.

My other Dr is a Professor of Rheumatology and it is she who has mentioned the possibility of MG but antibody test & SFEMG were ok. I have read that CNS Lupus can mimic MG closely, have you heard of this?

Thank you again. Clare

Clare,

No, CNS lupus does NOT mimic MG. Why? As I said in the other post, MG muscle weakness is fatigable and gets better with rest, Mestinon, and Tensilon. CNS lupus does not get better with rest or those drugs.

That's why an MG expert is so important. I wish you could find a good one in the UK who isn't a jerk (some of them are super horrid).

Even if you're seronegative, you can still have MG! Have you tried taking more photos of your face (before and after photos)? Do it in the same place, with the same lighting, and the same face/head angle.

Can you see a neuro-ophthalmologist?

I was seronegative at first and then had MG antibodies later. It can fluctuate over time, just as lupus antibodies do.

Is there anyone who can do a Tensilon test? If you have obvious ptosis, they can easily see if you respond to it. Some people have before and after breathing tests to see if it improves. Tensilon only lasts about five minutes, though, so any sign of MG has to be obvious and quickly testable.

How does your rheumatologist feel about doing a trial of Mestinon? Maybe start off with 15 or 30 mg. to see if it helps you. Ask her about it. If you don't have MG, you won't get better!

Keep working that UK system and get some help. ;)

Annie

Thank you once again Annie.

The bit that has confused me about CNS Lupus is a particular article I read under the Peripheral Neuropathy section of

http://emedicine.medscape.com/article/1146456-clinical

Best wishes, Clare

"The neuromuscular junction may be affected, mimicking the weakness patterns (and physiology) of myasthenia gravis or myasthenic syndrome."

Do you mean that excerpt?

Mimic is the word in question here. Mimic does not mean that it IS MG. It means that someone who is not familiar with MG might think it could be that.

It's the same situation where some physicians think MG is MS. But an MG expert knows what signs to look for to differentiate between MG and other disease states.

So I guess I should have said that it can "mimic" MG to the untrained eye (and untrained mind). Perhaps Medscape should be more specific as well (if I can dare to question Medscape)!

Again, a trial of Mestinon would be very revealing. If your weakness is due to another cause, then it should not get better with Mestinon.

Annie

Clare,

Please give this to your rheumatologist.

http://www.ncbi.nlm.nih.gov/pubmed/25323839

Also, this is from a friend of mine in the UK.

http://myaware.org

You might find some help on that site.

Annie