Hi, I'm new here as of today and joined hoping to get some information.
I've been a Type 1 diabetic for 47 years and have been able to quite well. I have been having symptoms since January of 2014 pointing towards ALS. I have gone through a battery of tests including MRI's and blood work ups which were negative for a wide variety of conditions. My last EMG about a month ago showed issues in both motor and sensory nerves. I had my 3rd appointment with my neurologist on 12/9 where he said ALS has moved to the top of the list. I researched diseases that mimic ALS and CIDP was one that has not been eliminated in the process of elimination steps one needs to go through to arrive at a diagnosis of ALS. With my sensory nerve issues my neurologist thought it would be worth investigating the possibility of me having it. He is working with my insurance company to see if they will they will approve the IVIG procedure to see if that helps my symptoms.
I researched the symptoms of CIDP and found the following. I noted if I have these symptoms next to each:
Early symptoms of CIDP
Difficulty chewing and swallowing - Yes
Fatigue - Yes
Impaired balance and coordination – Yes… legs getting much weaker in last month or two causing balance issues. I also get dizzy
Numbness or tingling in arms or legs- Left hand feels a bit cold numb at times. Feet / thigh get numb / fall asleep faster than they used to, especially when I put them up on a coffee table when watching TV
- Weakness (loss of strength) – Left hand has become very weak, especially thumb and forefinger, muscle atrophy in hand and left arm. Again, my legs getting much weaker in last month or two
Later symptoms of CIDP
As damage to the nerves worsens, so do the symptoms of CIDP including:
Balance problems, difficulty walking, and falls – yes see above. Also… my gait has changed, I can’t run, and stairs have become more difficult
Changes in voice – Yes, voice has become nasal and slurred. The degree of this can vary throughout the day sometime
Gradual difficulty walking and speaking - yes
- Incontinence (inability to control urine and stools) - no
Loss of sensation – At recent visit to neurologist I had a little more difficulty detecting his pin prick in my feet and lower leg areas. Could still feel it but not as well as before
Muscle spasms – yes… cramps in calves and in the hamstring area
Muscle weakness – Yes.. arms, leg and face
Paralysis – no
I also have fasciulations that started in my left arm and shoulder and have spread to the same on my right side as well as my thighs. Are fasciulations a common finding with CIDP.
I was also wondering if anyone here was facing a potential diagnosis of ALS but was discovered to have CIDP.
Thank you - soccerdad
I am not a doctor but your symptoms sound exactly like mine and I have CIDP. Have you thought about getting a second Nuros opinion. I went to two as well as having a nerve sural byopsy before I was diagnosed. It also helps to convince the Medical Aid decision. Best of luck
I have had CIDP of the slow progressive type for quite a few years, but only recently diagnosed. I have had fasciculations for several years, they come and go in frequency and have been located mostly in the thigh and triceps muscles always on the left side. There has never been a suspicion of ALS in my history, so from my perspective fasciculations are a normal occurance of CIDP.
I also have all of your symptoms except changes in speech, chewing or swallowing.
I was diagnosed with viral encephalitis in '99 when I was working in NYC but came back home to Washington DC and woke up one morning not being able to move my legs or wiggle my toes. A year later I was back to normal after much physical therapy. 2 years later my whole body just went numb and never recovered. I had much weakness and never have regained feeling below my elbows and knees. It all happened so sudden that ALS was bandied about. I did have trouble with swallowing rice and certain foods, but it has never gotten much worse. In 2004 I got the CIDP diagnoses. I have had no luck at all with IVIG. All I got out of it was I could sort of sense feeling hot water a tiny bit on the back of my hands. I have not done it since 20008. I take immuran everyday. I was diagnosed type iI diabetic in 2000. But it may of been because of the massive amount of steroids they gave me for the brain infection. That makes your blood sugar go nuts. My blood sugar numbers have been just fine and consistant since. The ALS potential diagnoses scared the hell out of me. But it was ruled out after 6 months. I continue to have muscle atrophy and fall more frequently and I have been getting more electrical zaps. I have gotten one where I fell and blew out both knees this year and needed surgery. I also herniated and broke a piece of bone off my lowest disc and had banco surgery this year. I have not idea how I did that. The piece was lodged in my spinal cord and doctor was amazed I could walk but having this CIDP makes you pretty tough. Falling is what scares me the most. I am 6’4" and my doc jokes I have farther to fall. I have busted my nose twice during falls as wells as numerous head smacks into things. The electrical zaps seem to be getting worse for me. But I can still Excersize and ride my mountain bike. So I feel very fortunate compared to many. I find keeping the weight off always makes things better. I certainly hope ALS is not your diagnoses. CIDP sucks, but I have been still trying to live my life and still play music professionally even though I have barely any feeling. I just have to work harder and warm up more. I have just about all what you have. But not so much with chewing and swallowing. I also have had bacterial meningitis is 2007 which nearly did me in as well. Neuro doc thinks brain infections are not related to CIDP. But I probably got CIDP from west Nile virus (encephalitis) and compromised immune system
Below the waist, our symptoms are identical. My first and most trusted neurologist diagnosed my "probable" CIDP but the IVIG did not help so after 3 years I discontinued it and fortunately my symptoms have not worsened. I would tell people my feet and legs are weak and tired before I am. My feet "flopped" due to a loss of plantar flexion resulting in inability to run or stand on my toes plus my rather large calf muscles have withered to almost half their original size.
4 years ago my (second opinion) university based neurologist suggested ALS also due to fasiculations (twitching). My trusted neurologist absolutely denied I had ALS. So far he is right. Of the 4 people I know who had ALS, their symptoms progressed from diagnosis to totally disabled in 2-3 years. I am about like I was 4 years ago.
Best wishes. Hang in there.
Thank you all for your replies.
Seadog, I like the neurologist I am working with now. He is part of the highly respected Loyola Hospital here in the Chicago area and specializes in Motor Neuron Diseases or Disorders. He was recommended to me by the previous two neurologists I saw. Still, with that I will probably seek out a second opinion when I get a final diagnosis. You mention “It also helps to convince the Medical Aid decision.” Would you mind clarifying for me?
Yitzi, thank you for your input as well as it pertains to fasciulations.
Richard G… wow… you have been through a lot and I admire your courage and fortitude!! I know what you mean about steroids driving blood sugars way up. I dealt with that over 20 years ago when I was suffering from a herniated disk.
Mike… I appreciate your input as well and am happy to hear your symptoms have not worsened. They progression of ALS you mention has me totally scared. My neurologist is trying to get approve the IVIG procedure to see if that helps my symptoms… so I’m in a bit of a holding pattern.
My concern is the combination of the progressive weakness, fasiculations, swallowing and speech / voice issues. Is there anyone on here who has experienced nasal and slurred speech in the course of their CIPD?
In 2013 I was diagnosed with CIDP and had many of the symptoms you report. Got 5 days of IVIG and did a quite rapid recover of arm and hand problems, about half as much recovery in my legs. About 6 months later went to another neurologist (specialist in CIDP) -- after a few tests he said I don't have CIDP and ordered a muscle biopsy, turns out I have myositis (actually Inclusion Body Myositis (IBM) rare with no "cure" treatment, a slow degenerative muscle weakness --at least now I am being treated for a muscle disorder and not a neurologic disorder. my STRONG recommendation: get a muscle biopsy be to sure it is CIDP not a muscle problem
Mayo in Arizona jumped the gun with a working diagnosis of ALS later rulled out , as CIDP
Thank you Loni Hart and BobF for your reply!
Assume nothing. I've had all the symptoms you describe, including nasal speech and speech problems. Two neuros confirmed I had CIDP, not ALS. Although, I had a diagnoses of ALS for 2 miserable weeks. There are many simple tests to determine upper neuron involvement. I'm reaching a place of remission after 22 months of high dose IgG that brings my CIDP to a manageable level. Worry will not do you any good. What ever diagnoses you get, for any disease, you will freak out at first, then you move on. Have faith in your active future!
Estaban… Thank you so much for your reply. One quick question… Did you have upper motor neuron involvement?
NO upper-neuron involvement detected aftr a very through exam by a neurologist and a physiatrist.
But in my reading of CIDP literature, I did come across a reference to upper neuron involvment in CIDP. So, anything is possible. Once you begin to understand the complexity of lower motor neuron diseases you'll realize we're just dart boards that a neuro throws a dart of diagnoses at hoping for a bull-eye, but also hoping to score the most points for a tally of meds & procedures that beat the disease.
Estaban... Thank you so much for your reply. One quick question... Did you have upper motor neuron involvement?
It is so improtant to stay strong and be aware of the power of the NOCEMBO (When an MD jumps the gun and mkaes an early diagnosis of ALS or the other nasties like IMB or CMT type 2.
Mayo did the same to my wife. One month of waiting beleiving in Dr. Peter Bosch . It was a very bad, false, working diagnosis that later lead us to UCLA for a CIDP diagnosis and a late treament start.
TRUST BUT VERIFY !!
Thank you Loni.
My neurologist has not made the ALS diagnosis as of yet. While saying that ALS has moved to the top of the list, he is still searching. We discussed the possibility of CIDP in my appointment with him last week. I'm on an HMO and need to get authorization from my insurance company for the IVIG procedure. My neuro was very proactive in providing my PCP the write up and hopefully that request is submitted for approval by today or tomorrow. I know it's an expensive procedure and I'm hoping it will get approved.
As mentioned in my original post here, I have been a type 1 diabetic for 47 years. I did some research to see if CIDP would be more prevalent with people with diabetes since neuropathy is a complication of diabetes. This appears to be the case. Below are two examples of what I found in my research:
- Various forms of neuropathy are seen diabetic patients; chronic inflammatory demyelinating polyneuropathy (CIDP) seems not to be infrequent neuropathy in patients suffering from diabetes and it seems to be more common than in the general population
CONCLUSIONS: Demyelinating neuropathy meeting the electrophysiologic criteria for CIDP occurred in both types of DM (diabetes mellitus), and its occurrence was significantly higher in diabetic than in nondiabetic patients.
So I'll keep pushing forward and see where this all ends up. I'm very proactive in advocating for myself and will continue to be so.
Those who have responded have been very kind in sharing and providing insight. Thanks so much to all for doing so!!!
Hey soccerdad, You may not get much use out of asking about our specific symptoms because they vary so much.
I was in a similar situation 2 yrs ago. As various things were considered and eliminated, we kept coming back to ALS. In my case, when they looked at CIDP, they used the IVIG as a diagnostic tool, since so many CIDP patients respond to IVIG. Unfortunately, I did not respond favorably, just kept getting worse. So once again, they were convinced I had ALS and would soon not be able to breathe or swallow. I was totally paralyzed from the neck down, but NO breathing or swallowing problems, which they were watching very closely.
This was at an excellent University Hospital in Chicago. I went to Mayo Clinic in Minnesota for a second opinion. At Mayo, I was under the care of one of the best neuros in the country, Dr Lyell Jones. He had seen CIDP quite a bit and put me on a series of 7 Plasma Exchanges followed by heavy Prednisone and Cellcept. It began to work almost right away.
My point is that not responding to IVIG cannot definitively prove you do not have CIDP.
Best of luck! I would advise trying Plasma Exchange, steroids/Cellcept, or all combined before ruling out CIDP.
Thank you so much Jeff. I'm assuming step 1 would be to see how I respond to the IVIG... correct?
I am so glad you found the answers and you responded to them.
Mike - aka soccerdad
Hi Peteys Grandma. Ironic your note arrived this morning as I called my doctors office to have them see if there's an in home infusion provider in my network... the one recommended by my neurologist is not... fingers crossed they can find one! I'm starting to notice more numbness in my left foot and some in the thigh. I got a shooting pain in the right foot last night but it didn't last.
My blood pressure goes the other way... low. I find I get dizzy and the combination of that and the legs being weaker cause balance issues. Do others here experience that dizziness... almost like vertigo?
Ask your doc if CoQ10, up to 400Mg/day, is OK-along with Taurine and GABA
Controlled my BP & spasms very well along with a careful diet .
Slowing negative chelation (Absorption ) of minerals by phytic acid reduction or overwhelm Phytic and Lectin with brown rice miso( aged 2 years a must – I like Ohsawa® Yamaki Organic 2-Yr Brown Rice Miso ) 1 tsp pre dinner per day and 1 tsp. white raw onion . I would suggest anyone with an auto immune disease educate themselves about Phytic acid and food sources of probiotics like unpasteurized cabbage-kraut and Brown Rice Miso. This dropped my glucose nearly 60 points, balanced my TSH a-T3 and allowed me to nearly double my treadmill time.
A good source on reduction of phytic acid can be found at http://www.phyticacid.org/soaking-beans/ (I use an old fruit dehydrated, which is at a perfect 140 degrees(See chart on this hyperlink), for 4 hours for steel cut oats or buckwheat. I do a one week batch so all I have to do scoop a portion out of the fridge then bring a daily portion to a boil- add coconut butter or Kerry Gold (Ireland grass fed Butter rich in Omega 3) and some flax seed milk daily.
In addition acidulation with a few drops of lime juice enhances the process. Can be used with brown rice. This boost your a, Zinc,A and Magnesium absorption. Thus helping with not just pain but nerve rebuilding and controlling TSH (your thyroid functions).
I also avoid the heavily chlorinated chicken (95% of what’s sold in the US) I only use “air Chilled”. Then we recycle all the bones for broths in ice trays.
On this diet I get far less colds and flu now.
Again pass all diet or OTC’s(Supplements) by your Doc(s) and pharmacist BEFORE trying.
Hope this keeps you healthier too!
There may in fact be subsets of CIDP not yet discovered.
We have to be very careful in not having a working diagnosis the insurance companies will dig in about covering your treatments for.
Before each test ask your Doc what he expects to discovered and if it’s positive what’s’ the treatment.
Keep a simple spreadsheet of:
DATE INCIDENT LABWORK INTERVENTION( TREAMENTS)
(Along with Current Rx’s and ones that “did not help” or had adverse reactions)
Bring this to every doctor's appointment along with specific questions and your research with citing of whenre you found the article. Docs may get frustrated with too many Dr. Oz qoutes or Wikipedia (unless you substanciate it with peir reveiewed artilces of of reputable journals). I suggest when you Google add "+NIH" at the end to rule out witch doctors, snake oil and fakes