New working diagnosis of CIDP, starting pred
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July 2, 2017 at 4:26 am
Hi, so I very recently received a working diagnosis of CIDP, however not everything adds up for my neurologist and I, and given the relative rarity of the condition and the variable presentations I feel those of you with CIDP might have some additional input.
I’m 31 now, but I have had bizzare symptoms since late 2012, those being momentarily feeling like I couldn’t tell where an arm or leg is in space, and tingling. These episodes only lasted minutes but were occurring on a weekly basis. I had an MRI and MRA brain done (normal) and a few labs. After a few follow ups i was told to chalk the propriocetive/paresthesia problems up to stress/anxiety from my residency, which is what i figured it was too since nothing added up. So the symptoms went away for months, then returned, and resolved. It did worsen with stress so i continued to write it off, and i was young and healthy otherwise.
So this went on for about 3.5 years but it just wasn’t too bad, and im an anxious person. What prompted me to initially seek care again was actually episodes of what seemed to be orthostatic hypotension that began April 2016. Vision blacked out over only a few seconds consistently on postural changes. This still happens sporadically by the way. Saw my PCP, had MRA circle of willis, MRA neck, at his discretion, and a ton of labs including esr/crp/autoantibodies/lyme titers etc. at my suggestion. So everything was normal but my ANA was borderline 1:80. My PCP said looks fine see you in a year. The docs i work with were not much help either. So i decided not to worry about it and relax.
Then in August 2016, the overt burning in my left foot, left leg, and eventually left hand started. I also stated dropping things requiring fine motor skill. I immediately scheduled to see a neurologist. By the time i saw him in October, all my limbs burned on and off daily, usually on the left side but sometimes bilateral, and i developed a very mild left foot drop (feels floppy). So i had yet another MRI brain, some labs, more waiting and scheduling problems. It’s a peripheral neuropathy. Finally had the NCV and EMG done in March. EMG normal, NCV shows block in the left leg only, suspicious for a pattern of demyelination, though very mild. Then my hips feel off. Saw him again in May, he says it’s either CIDP, or an inherited form like CMT but i have no other physical findings or family history to suggest CMT. He was hesitant to start any treatment in May since i have such an indolent course and wanted to see me in 6 months and repeat EMG NCV tests then. So i agreed. A few weeks after that though, my left thigh had spasms and stopped after 3 days leaving me with burning pain that is somewhat constant, plus i can tell it takes effort to get out of a chair. Called him, and i just started pred 60mg yesterday for a 60 day trial. After a few hours of my first dose at 730am all my burning was gone up through 8pm. I am thrilled, and didn’t expect results this quick, of course my strength is not recovered yet until my nerves hopefully heal.
Problem is its 430am right now and im wired. I wanted to try IVig first since i am very wary of taking pred knowing all the adverse effects, but I’m doing it anyways. Very long and frustrating but enlightening process being on the patient side of things. Plus my wife thought i was nuts if i ever complained of my symptoms. Everything seems to add up to CIDP including possible autonomic disturbances. I hope this is the right track.
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July 2, 2017 at 10:53 am
Have you had a spinal fluid test yet? That is usually done when GBS or CIDP is suspected. If it is positive, you should get IvIg. Prednisone can be a problem long term, but not necessarily for a short term. I took it for at least a year in periodically reduced doses with no ill effects.
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July 2, 2017 at 8:23 pm
If the prednisone is working, I’d stick with it. I’ve been on it since December, starting at 80mg a day.
For a month, it wrecked havoc on my sleep and there is the weight gain, but overall it was tolerable.
Unfortunately, Prednisone did little to help my CIDP, but apparently in others it works great. The one good thing about steroids is that they are cheap. IVIg is crazy expensive. Thank God I have great health insurance or I would be in the poor house or not getting treatment at all.
My new doctor started me on monthly infusions of IVIg and is tapering down the steroid. The IVIg has put me on the right track as my symptoms are slowly getting better.
You might want to watch this presentation on the symptoms and treatments for CIDP. https://www.youtube.com/watch?v=5cLbFKc3Vkk&feature=share
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July 4, 2017 at 6:47 pm
I’m in a similar boat with “atypical” CIDP. Not a classic presentation, but everything else was ruled out. I seem to be responding to IVIG. From what I’ve read, diseases like CIDP might really be a spectrum that the medical world is still learning about. But if it responds to a treatment, I guess it doesn’t matter what we label it. My neuro was very anti-steroid with the CIDP diagnosis. He had discussed steroids earlier on when he thought it was auto-immune and inflammatory, but hasn’t wanted to touch steroids once he got closer to it being specifically CIDP. Not even for back pain and not even for the orthostatic hypotension (a different steroid, not what would be given for CIDP).
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July 4, 2017 at 7:11 pm
B, I don’t understand why your neuro would think a diagnosis of CIDP would be a reason to avoid steroid treatments. CIDP was differentiated from GBS, in part, because it was found that the effectiveness of various treatments differs. In particular, steroids are believed to be helpful for CIDP but not for GBS.
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July 4, 2017 at 7:23 pm
GH – I don’t think his position is that steroids are ineffective. My impression is that he thinks the steroids have a lot of side effects and if IVIG works he’d prefer not to use steroids. He also wouldn’t include them with my infusions when I was having headaches. I had heard that helped and asked him and he said no. In the end, he was right I think because my headaches have diminished significantly since I started in December. But I’m new to this world and may have the wrong impression.
So I don’t think CIDP diagnosis meant no steroids, I think it opened up IVIG as a possibility, which he prefers.
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July 5, 2017 at 12:39 pm
I started a 6 week run on 60 mg of Prednisone back on June 17, and will do a taper after that. I have been bombarded with steroids for both retinal bleeding (implants in eyes for six months) and after one IVig treat me at the end of March, I had five days of Prednisone in April and six days of Solumedrol pills.
Since starting the steroids, I have put on almost 60 pounds, 21 in the last month. This is all in an attempt to get me walking because the nursing home I am in will not allow the infusion service in for IVig, and the infusion center will not take non walking patients without a full time attendant. This has been very frustrating, because the nursing home is saying it is a liability issue, even though I am willing to sign off on it, as well as the infusion service. The insurance allowed me five day hospital stay for IVig, but it cost them almost $300000 and $1400 for me, plus having to pay the nursing home to hold my room, and when I got back, they had given it away to someone who was admitted to receive IV treatment!
The Prednisone has given me back some strength and a little numbness is gone, but all of the extra weight isn’t helping my ability to walk. I can stand, but haven’t taken any steps yet, as waiting on new ankle brace because to swollen for the old one.
I have been referred to the UC Irvine Neuromuscular Center on August 14, sainting since February for the appointment. My neurologist wants to confirm the CIDP diagnosis and my insurance doesn’t want to pay for any more tests or treatment without confirmation.
All I want is to be able to go home and walk enough to get to the bathroom.
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July 5, 2017 at 11:54 pm
Ive been on Prednisone for quite a while at different strengths from 10 to 120 mg a day. I dont think it helps much but the neuro throws higher doses at my cidp when the ivig isnt working as well as usual. At 10-20 mg+ my vision gets blurry, and right now my sleeping hours and patterns are horrible, have gotten increased eye pressure so Im on glaucoma meds and now have drug induced diabetes. We are on another taper down schedule I hope we can stick with.
If it works for you with minimal effects, great, but be aware it can be problematic. Oh, yeah, Im also up about 30 lbs and with the cidp walking/balance issues, exercise is kind of limited to get the weight off.
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July 6, 2017 at 10:53 am
Well I’m going for a spinal tap tom..kinda nervous any advice? took also diff blood tests that takes two weeks to come back..i hope this latest rd is the answers i need sick of going to doctors.. this been going on for 5 months.. i take the gabaapetin sometime my foot will go numb leg or weakness in hands.. it started in feet went up to my knee now is in arms..doc said could begin of CIDP but not sure.. i just continue to pray and follow up
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July 6, 2017 at 10:00 pm
Lumbar puncture wasn’t as bad as all I had heard and anticipated, (although I have kind of a high pain tolerance too) but if I had it to do over, I’d have told the resident and her observers who came in and guaranteed they had plenty of experience to get out and take me to interventional radiology. They tried twice and failed each time before I said enough. IR was a way better experience although I think the first attempts contributed to a not as “clean” report on the LP, but results were indicative of CIDP. A little headache afterwards and had to lie flat on back for a couple of hours.
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July 10, 2017 at 10:12 pm
So no, i have not had an LP yet. I actually ended up referred to an ID specialist instead to rule out lyme back in March. Well i dont have lyme disease at least, but also no LP. I saw him again the end of May, and he explained he’d prefer to hold off on an LP due to my mild and atypical presentation, since it may show nothing yet is an invasive procedure. Then i call in complaining of my worsening paresthesias and weakness, and he rxd pred. Mind you CIDP is still on the top of his differentials, which I’m taking his word for despite being so asymmetrical and minimal on the motor symptoms (he never mentioned the lewis sumner subtype). This is a pretty piecemeal way of doing things in my opinion. I have a university nearby doing a CIDP clinical trial but it’s 6 months to see a neuro sadly. I’m stuck for now.
The last 4 days on pred have been unbearable, so much i want to initiate a taper now. My left foot up to my knee and left hand up to my elbow burn worse than before up until the evening on and off. Frankly, despite having access to systematic reviews and meta analyses, and other doctors at my hospital, there is no good explanation of how the symptoms actually onset or feel from a patient perspective, probably due to the rarity. Nor did i read anything on temporary worsening of symptoms on treatment from neural regeneration which can occur with other neuropathies. It’s odd, as it’s like sudden yet creeping attacks of burning and weakness periodically. It’s as if what I’d imagine a TIA feels like only somewhat slower, if not for the fact that was ruled out and i have no risk factors, and the sometimes bilateral nature of it. Also i figure after a year i would have stroked by now. Very disconcerting.
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July 11, 2017 at 10:36 am
DerekAR-
I feel your frustration. I am about a month away from getting my evaluation at the University of California Irvine Neuromuscular Center. Six months is a very long time to wait when your body is battling you.
I have been fighting a major battle this week in my nursing home just trying to keep cool. They even threatened to throw me out yesterday when all I was asking was to keep my room door shut so the air conditioning stays in. There is no excuse for a room with AC to be 84F when a patient is on Prednisone and already has skin breakdown.
I had a LP in April. Not a bad experience, as it was done in Radiology which got it right, but the results were not conclusive. High protein, but normal high. I was in hospital for 5 days of IVig at the time, so it seemed like a good time to do it.
My strength is better with the Prednisone, but all of the extra weight just makes trying to walk harder. I really have not been able to walk since September 2015, and things aren’t getting better in that regard.
Hang in there.
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August 9, 2017 at 6:50 pm
DerekAR,
Have you checked your B-vitamins? Could be that a deficiency is responsible for at least some of your problems. If you haven’t also throw on a vitamin D test.-
August 19, 2017 at 4:04 pm
I’ve had a thorough battery of labs. B12 was over 800. Everything came back normal except my ANA being 1:80. I had a CSF study 2 weeks ago, and all was normal except elevated albumin (37, upper limit is 25) and total protein 45, being the max upper limit of normal but also the lower limit for a CIDP diagnosis. I was tapered off the prednisone completely by the neuro I saw in the hospital here since my fasting glucose went up to 200 and other undesirable side effects. I’m waiting for my neurologist to get on the ball and start IVig and switch to SQig after a loading dose, and if he doesn’t I’m seeing another one that I’m sure will be more aggressive. Meanwhile I sit here with burning extremities and a numb face and mild foot drop while he does nothing.
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August 17, 2017 at 4:56 pm
Finally got to the UC Irvine Neuromuscular Center on Monday. Was examined by two doctors and they are doubting my Neuro’s CIDP diafnosis, but I am not sure why. They are going to redo the EMG and NCV tests, but I have to wait until November for that to happen. They seemed to be more concerned about the numbness and muscle wasting along the ulnar nerve in my left hand and arm than the fact I cannot walk.
New blood tests being ordered, including TSH, B12, autoimmune and neuropathy. Because I started having issues after all of my old mercury fillings removed, I am also being checked for heavy metals. I am now waiting to find out if insurance will pay for the blood tests. They didn’t like paying for the last batch, that included Lyme Disease and a bunch of other things.
It has been a long battle trying to get a diagnosis and treatment. I first saw my neurologist August 18, 2016 after losing the ability to walk September 2015. My money is running low after having to pay $7500 per month to stay in a nursing home. This current delay is driving me more nuts. Coming off of two months of Prednisone, which did little for me and now I have to lose 50 pounds.
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August 19, 2017 at 4:11 pm
Funny enough, one of my patients a week ago was a rheumatologist who happened to have been treated for multifocal motor neuropathy, successfully so with IVig. He gave me a referral to a guy that Dx him in 10 minutes on the first visit, he’s double boarded in electrodiagnostics and neuromuscular disorders. Some of the patients he talked to in the infusion clinic took up to 7 years for a proper Dx according to him. A nurse infusionist I had as a patient not long ago said the same thing on the time to Dx. Sad.
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August 20, 2017 at 12:04 am
Got my visit notes from UC Irvine. Here is a list of the tests that have been ordered:
Sensory-Motor Neuropathy Antibody Panel – MSC Sendout .
Request
Comments: Sensory-Motor Neuropathy Antibody Panel – MSC Sendout
Referrals/Future Tests and Recommended Timeframe:
1. EMG 2 Limbs
2. Glycated Hgb, A1C
3. Heavy Metals Panel 6, Urine with Reflex
4. Methylmalonic Acid
5. Nerve Conduction Studies 11-12
6. Protein Electrophoresis, Serum
7. Serum Immunofixation
8. TSH
9. Vitamin B12 LevelThese tests are going to be done on Momday, August 21. Dob’t know if I will get results before next appointment in December.
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January 27, 2018 at 6:01 pm
I thought I would put a close to this thread. The new neurologist I saw ran my NCS/EMGs again. They were normal. We found out the last neuro tech put in the wrong data for my height etc and since I’m far taller than average, it was falsely latent on the NCS. Did a skin biopsy for epithelial nerve fiber density, which was positive for severe small fiber neuropathy with some likely autonomic neuropathy too. Did more focused labs, and we discovered I have celiac disease, with almost no GI symptoms, hence the nearly 3 year delay in diagnosis and misdiagnosis. Started a gluten free diet and my symptoms are 90% better after 2 months. I thank God every day I got that third opinion. Getting my confirmatory small intestine biopsy soon, but given my sky high antibodies to gluten and vast improvement on the diet, my neuro already discharged me. So, don’t forget to remind your neuro to do a skin biopsy for small fiber neuropathy, and might as well check celiac panel as well if you are still undiagnosed with CIDP symptoms. CIDP is 1 in a million incidence, versus celiac being 1 in a 100, so it’s prudent to rule out. Oh, and those steroids I was on gave me gastritis according to my GI specialist…
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January 29, 2018 at 7:11 pm
Interesting. I was Dx’ed Celiac over 10 years pre CIDP.
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