Ditto.   How are you doing now?

Today, Jan 07, 2022 I mentioned to my Neurologist, a member of this group’s Medical Advisory Board, that the subject of Ocrelizumab for my treatment of IVIG/MMN was mentioned.  Here is his reply, “I do not recommend Ocrelizumab. It would be more appropriate to stay the course with IVIG and see where things are at in a few months. Depending on that response it is not unreasonable to consider other medications, but not ocrelizumab. Rituximab (a very similar medication) would be a more reasonable medication – but again, that would really be down the road depending on how IVIG played out.”

MarkENS,  If you still check the Forum How are you doing these days?

It is regretful that you have experienced these side effects. There is a lot of data regarding the long term use of steroids and the accompanying induced adrenal insufficiency.

One NIH article explains- “The optimal time to test for HPA axis recovery following prolonged glucocorticoid use remains controversial due to variability of data for timelines of when that occurs. In general, the earliest that HPA axis recovery may be seen is about 4 weeks post-cessation of prolonged glucocorticoid use.”

Sounds as if you have just barely passed this timeline.

Article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5682381/

good luck to you.

JIM_LA gave some links in his 2015 reply to a similar question:

Sweating

True, it is difficult for Family and Friends to truly understand this condition. Sadly, we have probably all experienced this lack of empathy.

Moreover, everyone deals with the typical feelings of denial, anger, bargaining, depression and acceptance. Focus on the acceptance. Wallow in self-pity at your own peril.

Find a support group and some different doctors. Good luck.

May clinic has this to say about

“Recovery
Although some people can take months and even years to recover, most people with Guillain-Barre syndrome experience this general timeline:

After the first signs and symptoms, the condition tends to progressively worsen for about two weeks

Symptoms reach a plateau within four weeks

Recovery begins, usually lasting six to 12 months, though for some people it could take as long as three years”

Every case is different.

GBS without continuing recovery and/or worsening after 8 weeks, is by definition, CIDP.

It is difficult to not have a firm, verifiable diagnosis. According to the National Institutes of Health (NIH), “The diagnosis of hereditary neuropathy with liability to pressure palsies (HNPP) is established in an adult with (1) recurrent focal compression neuropathies and (2) family history consistent with autosomal dominant inheritance.”

In your case the doctor has already ordered the PM-22 gene deletion test. I also had one of those tests.

Which diagnosis did I want? Neither. Because HNPP is family history related it is somewhat easy to say- nope, never heard of that on either side of the family. Well, that depends on how personal the family tree talks get. Sometimes, the family history remains unreported for various reasons.

Well, your test will be back soon. Then you’ll know.

In my case, in addition to the PM-22 gene deletion test, ‘they’ also looked for Charcot-Marie-Tooth disease (CMT) among many other tests.

I suggest people read this article: https://emedicine.medscape.com/article/1172965-overview

If you get a membership required warning it’s no problem. Become a member.

Good luck and best wishes.

Indeed, not to say you need to just roll over, rover, and say yes to the doctor. But, it may be equally important that the doctor run some tests to rule out conditions as it important to run tests that point towards a diagnosis.

Suggest you read this article. If you get asked for a membership, that’s easily solved, create one.

https://emedicine.medscape.com/article/1172965-overview