jk
Your Replies
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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.
March 21, 2018 at 5:14 pmFirst 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 A small amount of fluid is withdrawn from the spinal canal in your lower back.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.”
March 21, 2018 at 5:00 pmIs UTSW where you went this center of excellence?
UT Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, TX 75390Yes, 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 77030It 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.
February 20, 2018 at 10:43 amparonnee- “bias that causes undue pressure when not moving” It means my AFO’s are formed with an angle of less than 90′ from the flat foot portion to the vertical support. Or, measured from behind the heel, there is more than 90′. Rather like a large letter L with the vertical not vertical.
Said another way. When I’m standing straight up, or attempting to, my braces tip me forward.
February 20, 2018 at 10:33 amAlcohol is a known contributor to nerve damage. However, that result seems more appropriate to chronic abusers, not occasional users. Personally, I totally stopped alcohol intake. Of course, you’d likely never know the result because there are too many other variables.
Good luck with your 2nd opinion.
February 20, 2018 at 10:26 amYes, welcome and thank you. How do ‘we’ find the facebook group?
February 15, 2018 at 10:55 amAs a general note- I have worn a single customized plastic AFO since 1980. I have worn bi-lateral customized AFO’s since the late 1980’s. I have the following comments:
1. AFO’s should not pinch, squeeze, slide or otherwise cause pain.
2. AFO fit should be re-evaluated periodically.
3. If you get a poor fit or poor service, change service providers.
4. I would much rather wear my AFO’s then stub my big toes, curling them under my feet and then walking on them.
5. I would rather wear AFO’s than trip over a small imperfection in the walking surface and fall flat on my face.
6. AFO’s are a nuisance when driving, so I take them off.
7. If I do not wear knee high nylon ‘stockings’ the plastic rubs and then burns the skin on my calves. Ouch.
8. AFO’s are a nuisance to wear while standing straight up and still. They are designed with a bias that causes undue pressure when not moving. So, I avoid standing still, preferring to not deal with the bias.February 15, 2018 at 10:45 amminazeer- No. The exercise I described was demonstrated at at a GBS-CIDP Seminar.
February 13, 2018 at 9:29 pmJill- thank you. No need to dig up paperwork. Your description is adequate. It also explains why I was only offered pins. Both my left and right tibials were compromised.
paronnee- thank you for the explanation and feedback.
February 13, 2018 at 10:19 amBuzz, although there may be a connection between IVIG and stopping Lyrica I never noticed one.
Ideally, the IVIG will slowly improve things and then you can ask your doctor about titrating down and off the Lyrica.
February 13, 2018 at 10:01 amAnd for Jill- could you be a little more specific? Surgery for GBS/CIDP muscle wasting, nerve signal loss induced foot drop sounds as if the ankles were pinned. What other options are there? Thanks if you share.
February 13, 2018 at 9:57 amI agree with GH. However, they also make a carbon fiber AFO. https://www.alimed.com/afo/
Years ago I tried carbon fiber AFOs. Could have been 10 years ago. One of them cracked almost immediately. They told me no running, no jumping, no climbing, no golfing, nonsense. I went back to the ones GH describes. I do see many others wearing carbon fiber now.
There are at home exercises to help with your balance. One is to stand straight, feet together, ankles touching and cross your arms to opposite shoulders. Close your eyes. Do this between a door frame for something to grab onto. When you feel up to it, graduate to standing on a small pillow. Be very careful. Keep your eyes open at first if you must.
Do not quit your job. How will you provide for yourself if you quit?
February 10, 2018 at 8:34 pmWhat’s the phrase I’m looking for? I like GH’s reply, it is concise, succinct and meaningful.
I’m feeling like chatty cathy right now.
Do you have any information on what basis the 2nd neuro made the diagnosis? For example, according to the literature did you have an MRI showing lesions in the spinal cord? In some people a Lumbar Puncture (LP) will have both elevated protein and elevated white blood cells. Sometimes a blood test looking for other diseases and the presence of certain autoantibodies is sampled.
In any event, apparently, the treatment for Transverse mhyelitis and CIDP/GBS are all similar. Specifically, Intravenous corticosteroid drugs, Plasma exchange therapy, Intravenous immunoglobulin (IVIG), Pain medicines. Differing treatments include anti-virals.
Further, it is unlikely that your description of left foot weakness, right foot weakness and left hand weakness matches the 1st neuro’s diagnosis of “bilateral axonal damage of only one nerve” because you’ve reported muscle weakness in these multiple limbs.
As B stated, generally shortness of breath is not a side effect of IVIG. And as B and GH asked- what is your follow up plan?
One 5 day set of treatment is not likely to be productive in the long term for either condition.
February 2, 2018 at 12:38 pmAgree with GH. Avoid antidepressant meds. Avoid carbohydrates to excess. That’s hard because carbs, particularly sugar, make the body happy. You don’t have to focus on the inabilty to work out. Get up out of the chair and walk around the house. Increase the time gradually. Walk outside when you can. Get assistive devices if you need them
Most importantly. Be happy. You’ll have to forget what was and overlook what is. Put on a smile minute after minute and focus on something you love. The days and weeks will follow and you will feel better.
January 15, 2018 at 2:23 pmEven if CIDP causes, or is suspected to have caused, elevated CPK levels I would want to know at least two things.
1. Which form is CPK is high?- CPK is made of three slightly different substances:
CPK-1 (also called CPK-BB) is found mostly in the brain and lungs
CPK-2 (also called CPK-MB) is found mostly in the heart
CPK-3 (also called CPK-MM) is found mostly in skeletal muscle2. Why is the CPK high? That is, rather than accept it is due to CIDP I would discuss with my doctor testing to rule out all of the more common factors. Specifically, heart attack, statin meds, intense muscle workout, alcohol, viruses, hereditary conditions and certain autoimmune diseases that cause inflammation in the muscle such as polymyositis or dermatomyositis.
