jk

Your Replies

  • jk
    January 7, 2022 at 8:27 pm

    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.”

    jk
    January 5, 2022 at 8:57 pm

    MarkEns,

    I too was declared in remission, based on no worsening without treatment, in 2016 by Dr. Jeffery Allen, a member of the GBS-CIDP Medical Advisory Board.

    Recently I felt weaker and sought out Dr. Allen up in Minnesota.  He compared my recent EMG/NCV and Clinical picture to that in 2016 and before.

    This sentence from his notes sums it up- “… His condition blurs the clinical distinction between MMN and mCIDP (Lewis Sumner Syndrome), and I think blurs the pathobiology mediating these disorders as well.”

    Just restarted IVIG every 3 weeks. Sigh.

    Happy New Year, everybody.

    jk
    December 15, 2021 at 6:36 pm

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

     

    jk
    December 15, 2021 at 6:28 pm

    Perhaps the poster can direct us to the source of the post above stating: “it looks like this drug was approved now by the FDA…”  The only approval(s) I can find are for MS.  Such as this- ” 14 December 2020 – Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced that the U.S. Food and Drug Administration (FDA) has approved a shorter two-hour infusion time for OCREVUS® (ocrelizumab), dosed twice-yearly for those living with relapsing or primary progressive multiple sclerosis (MS) who have not experienced any prior serious infusion reactions (IRs). .”

    jk
    May 3, 2018 at 12:56 pm

    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.

    jk
    May 1, 2018 at 5:47 pm

    GH is correct. I’ll take it one step further. One treatment of anything is not enough. Some neurologists are afraid to prescribe plasma exchange or IVIG. Find another neurologist who specializes in these conditions.

    Repeating what the Neurology Department Specialist at Mayo clinic told me, “They did not give you enough, often enough.”

    jk
    April 30, 2018 at 8:10 am

    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.

    jk
    April 27, 2018 at 11:20 am

    Every case and every patient is different. It makes no difference if somebody said 2 days, 2 weeks or 5 months on a ventilator, that answer, alone, is not helpful.

    I note no one has responded to you in almost 3 days since you posted. I’ll tell you why I did not. It’s exactly what you said in your last sentence- “Any info would be helpful.”

    What does the neurologist say? What treatment for GBS has he received and what treatment is he receiving now for GBS? Sometimes, a form of chemo is used to treat CIDP patients.

    GBS symptoms not improving in 8 weeks is, by definition, considered to be CIDP.

    jk
    March 28, 2018 at 4:28 pm

    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.

    jk
    March 28, 2018 at 4:22 pm

    Recommend you fill out the Chapter/Liaison help request form. Here-

    Find a Local Chapter

    Maybe they can help you. Otherwise, I would, first of all, find a neurologist you’re willing to travel to and then find if they accept your insurance. Generally speaking, CIDP, by it’s nature usually requires treatment.

    Muscle atrophy and weakness will probably not heal themselves, nor will truly atrophied, long term damaged, muscle fibre and nerve pathways recover much, if at all.

    Time is your enemy.

    jk
    March 23, 2018 at 11:55 am

    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.

    jk
    March 22, 2018 at 5:11 pm

    hazelk,

    Become the little engine that could. (from a children’s story)

    If you find you just can’t do it, find a friend, a neighbor, a new friend, or a relative. Approach every task with the notion that for now, all of life is little-by-little.

    good luck.

    jk
    March 22, 2018 at 5:06 pm

    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

    jk
    March 21, 2018 at 5:14 pm

    First of all, even though you say you have a definite diagnosis, you should accept these tests to establish a baseline.

    Heaven forbid, later on if you get tests what can you compare them to?

    Second, nothing barbaric about these EMG (Electromyography) tests. But then, I’m a barbarian. A little stimulation, a muscle twitch or two and a little needle poke with some slight annoyance as you use the muscle, or try to. So, grin and bear it.

    Thirdly, CIDP, by definition has ongoing symptoms for over 8 weeks (GBS is 3-4 weeks with improvement) and CIDP usually does not improve unless ongoing treatment is given.

    Look at this from another angle- How does anyone know it is GBS? According to Mayo Clinic GBS can be difficult to diagnose but your Doctor may recommend:

    “Spinal tap (lumbar puncture). A small amount of fluid is withdrawn from the spinal canal in your lower back. The fluid is tested for a type of change that commonly occurs in people who have Guillain-Barre syndrome.”

    Talk about a barbaric test, if you had a leak, you’ll already know what I’m talking about.

    “Electromyography. Thin-needle electrodes are inserted into the muscles your doctor wants to study. The electrodes measure nerve activity in the muscles.”

    “Nerve conduction studies. Electrodes are taped to the skin above your nerves. A small shock is passed through the nerve to measure the speed of nerve signals.”

    jk
    March 21, 2018 at 5:00 pm

    Is UTSW where you went this center of excellence?

    UT Southwestern Medical Center
    5323 Harry Hines Blvd.
    Dallas, TX 75390

    Yes, or no it’s often been stated on this website that peripheral neuropathies are difficult to diagnose. Your report of “…slightly abnormal were the MRI (which showed subtle enhancement related to the ventral nerve roots at the level of L1)…” reminded me of another post a few weeks back.

    Recalling, here it is- “MRI allows identification of enlarged nerves in hypertrophic polyradiculopathies.” Not to pretend to be diagnosing merely comparing similar wording from the posts of two patients with difficult diagnosis.

    If UTSW has left you wanting, try-

    University of Texas Health Science Center at Houston
    UT Physicians Neurology Clinic
    6410 Fannin Suite 1014
    Houston, TX 77030

    It is not unusual for spinal taps to initially come back normal. It is unusual to have feedback on an EMG without also having Nerve Conduction Velocity tests.

    Oh. Advice. Yes, get a substantiated diagnosis and ask about the benefit of IVIG.

    Good luck.