How long did it take from the start of symptoms to a diagnosis?
AnonymousMay 5, 2009 at 4:53 am
Hi fellow CIDP’ers,
I was just wondering how long it took you to get a diagnosis after you started having symptoms of CIDP?
As you probably know from previous posts by me – it took nearly 3 years to get a diagnosis. I was wondering if it was just me who had such a difficult time getting a diagnosis. I know I didn’t have the classical symptoms, as I had cranial nerve involvement as well as the usual CIDP stuff (absent reflexes weakness, etc) but it would be interesting to see how others went in comparison to me.
AnonymousMay 5, 2009 at 7:36 am
Hi Kazza! I started getting sick at the age of 27 and was diagnosed with Neuropathy that looked like MS and the doctor thought it was MS but could not get enough proof. Went 3 years with them only saying Neuropathy. Then two years later they diagnosed me with Lupus and Neuropathy but noticed it was Chronic Inflamatory Demylinating Polyneuropathy. They did a nerve biopsy back then also and could only link it to being lupus causing it. I went for 5 years before I got an official diagnoses. Went into remission a few years back for almost 2 years. Then I saw a rotten doctor in my area and he said I didn’t have lupus anymore! So I had to go through another two years of getting rediagnosed all over again. Only problem was I had other health issues that had them trying to rule out and fix so they could figure out if it was lupus aggitating me or not. Duke diagnosed me as having CIDP this past October. But claimed it was because of Lupus and not my thyroid as they thought it to be. I too have had some cranial involvement. I get weird eye twitches alot and a few other things. Was a real major pain not getting an answer right away. So I truely feel for you. And was not fun suffering with it too! And I still suffer! All these medications I am on and still suffer! Hmmm! Wished they had a miracle pill! Hugs
May 5, 2009 at 10:22 am
Hard to say cause for 4-5 years I was told carpal tunnel then when I finally got a dr. to look at my getting weaker it was about 10 months before we started treatment. The initial “look” said CIDP but it took months to rule out all the other possibilities.
AnonymousMay 5, 2009 at 10:23 am
For me, it was 5 weeks. I know the definition of CIDP says it has to be 8 weeks, but I think I had enough family history of much autoimmune involvement (parent, siblings, aunts, and cousins all had/have various autoimmune disorders plus I even had psoriasis already myself), and my clinical symptoms were classic. At first they were greatly concerned that I might have GBS, but that proved not to be the case. All my stuff started when I had the flu (fatigue at that point mainly, progressing to all the rest) and doctors think that a virus may be what triggers GBS. But my understanding is that they don’t yet know for sure what triggers CIDP. I think for me it was that flu virus plus the fact that I was under a tremendous amount of stress at the time. I was weakened and ripe for a health problem to occur.
And, even though my neuro says they caught mine early, I didn’t respond to my initial treatment. But at least I don’t seem to be getting any worse.
AnonymousMay 5, 2009 at 11:54 am
From this forum we constantly hear how important a good doctor is in making the right diagnostic choices and assigning the correct treatment regimen. I was incredibly fortunate that my primary (family) doctor realized my back pain was more than a lower disk problem, but instead he suspected a neuromuscular issue. He referred me to a nuerologist friend of his that conducted an MRI, that led to a EMG, that caused him to do a lumbar puncture, that concluded CIDP. From first visit to CIDP diagnosis was six weeks. It took another six weeks for my insurance to approve IVIG (jerks).
A good doctor is so important. But, to be fair, with everyone’s reaction to CIDP being so different, I can understand the difficulty making the correct diagnosis when there is no difinitive test. Plus, I imagine that many doctors aren’t thinking CIDP because it is so rare (3:1 million).
Hope this helps.
AnonymousMay 6, 2009 at 6:01 am
Thanks everyone for your feedback. Oh boy, it does seem to take a while to get a diagnosis 🙁
At least I’m not alone in my misery – only joking – I’m only miserable sometimes 🙂
Linda – Having CIDP is bad enough – but lupus and the thyroid probs you had last year, in addition to CIDP – ARGH.
I was just wondering how things would have been (disability wise) if I’d had treatment at the onset?
Thanks again for your replies 🙂
AnonymousMay 6, 2009 at 7:39 am
Hi Kazza! In the late 80’s and 90’s while getting sick and trying to get a diagnoses I bet I went to several different doctors telling them that I was getting very sick. My darn labs with this lupus didn’t want to show anything. But I was going to the doctors when I felt better because when it made me sick I just could not drive myself anywhere. It put me in a wheelchair for two years and bedridden half the time. My wardrobe bacame PJ’s half the time. Disability wise! If they would have caught me early and diagnosed me right away I would have only had mild case of Lupus that probably controlled with medication and knowing what I had too would have changed my life but not been as bad. Would have still been able to work a job and do things. They let me get so bad off and had no answers for me! Then I finally had one doctor be honest with me and told me suspected Lupus. But I had not reached all the criteria for it! When it went into CNS lupus then they had the criteria. And my labs did a whammy and showed positive ANA’s and Anti Double Stranded DNA’s and an IGM Antibody. Have to look that up. Think it was IGM or IGA. I had no choice then but to get on Disability. Been on it ever since. Right after I had a nerve biopsy is when I went into full blown lupus. Messing with the nerves in my body caused CNS lupus to attack me something aweful. Just like last year when I had the spine surgery. Two weeks later my body went on fire. I still say I was GBS back then but they said CIDP. After I got ran over in a parking lot and messed my back up my health from then on when haywire! The thyroid went crazy, my sleep went crazy, CIDP kicked in. Surgery here and surgery there. Even my asthma went nuts.
If I was diagnosed with Lupus from the very beginning when it started out mild I think I would be working today. My daughter got diagnosed right away because she started showing my symptoms and they knew I had Lupus. They did a skin biopsy and it came out positive and she had a positive ANA. And had 7 criteria but was mild. She works and does fantastic with her lupus and is in remission having no problems at all. My other daughter though because of her showing Rheumatiod Arthritis might be a different story getting diagnosed with Lupus. Her symptoms are showing different and it might take longer for her!
Like Cheryl said in one posting. One autoimmune disorder can trigger another one and then possibly another one. Which it has done in my case!
I would give anything in the world to be able to go back to work. It really upsets me being sick and dealing with illness.
My life as like others in here live on a day to day basis. One day I might do okay then have three sick days the same week or 5 days sick one day fine. Even seen months and months on end where I stayed sick!
Personally! The earlier the diagnoses depending on what disease is causing the CIDP the best prognosis. But then some get diagnosed with CIDP and the disease prognosis is poor because of what they found causing it. And others get CIDP and there are just no answers as to why! Bad thing is no two people are alike! Each one may have a different problem or auntoimmune disorder. And what one lupus patient may experience the other one may not. Just like CIDP. We all though seem to experence the same general complaints but one might be worse than the other one.
I pray for every single one of us in here.
Illness no matter what we have I wouldn’t put on anybody! When I see another new person posting I really want to cry for them because I know we have another victom that just got placed into a world of darkness having to put up with what many others are having to do. Hope this helps some! I wish you my best! Hugs
AnonymousMay 6, 2009 at 7:49 am
I had no peripheral reflexes for 15 yrs, but many visits to neurologists only told me that I had a pyshosomatic disorder. I gave up trying for years to work with drs after that and took the progressing neuropathy into my own hands, teaching my self balance patterns while swimming, skiing and walking. All the while, my symptoms progressed slowly. I had to quit yoga classes because I kept falling over and getting fatigued in the middle of a class, so I tried Tai Chi. That was also a gong show.
5 yrs ago I developed memory problems in addition to my psychosomatic balance and reflex issues. I tested positive for lyme disease and 3 coinfections with and ALS presentation. After 2+yrs of agressive treatment, I was sent to another neurologist who finally dx’ed me with CIDP. My insurance co refused to accept my dx and denied treatment for 21 months. During my fight with the insurance co, I developed autonomic symptoms, including breathing, GI, swallowing and seizure problems.
I’ve been on IVIG for 2 yr, and have made great improvements, but am currently rallying from a trial decrease in dose which allowed more disease progression.
So, all in all it took somewhere around 15-20 yrs to get a proper dx and treatment.
AnonymousMay 6, 2009 at 7:49 am
Oh! The thyroid issue! After they removed my thyroid I became Hypothyroid. They take labs on me trying to keep the levels controlled. Ans you gain weight intstead of lose weight. LOL! So you have to really watch that diet and still look at food and gain weight. I barely eat anything now except for all low fat foods because the weight just flys on me something aweful. But I have lost though since my mom got sick and caring for her took 20 pounds of weight off. Now I am really being careful to not gain it back. Even on medication for it I still get weird spells. Moody swings. Lets just say I can tell when my medication is not working right. I get thyroid symptoms all over again. Not as bad as last year but it’s there!
AnonymousMay 7, 2009 at 1:50 am
[QUOTE=Bill]Hard to say cause for 4-5 years I was told carpal tunnel then when I finally got a dr. to look at my getting weaker it was about 10 months before we started treatment. The initial “look” said CIDP but it took months to rule out all the other possibilities.[/QUOTE]
My husband had an almost identical path as yours Bill. Carpal tunnel diagnosis for 4 or 5 years, carpal tunnel surgery with no effect, then profound atrophy of the right hand and forearm, then footdrop, and then diagnosis. It took a specialist at a neuromuscular disorder clinic to get to the bottom of things and she did this very quickly. First neurologist was not so good and husband wound up with lots of permanent damage due to his incompetence. Moral of the story is it important to always get a second opinion. We didn’t do this in the beginning.
AnonymousMay 13, 2009 at 12:06 pm
I had slight numbness in my hands in May or June 2004. After ruling a lot of things out, my GP sent me for nerve studies at the local Neuromuscular Diseases unit. That was inconclusive, but they wanted me to keep in touch and come back. In October/November, the numbness started affecting my feet. In December I was diagnosed, and I started IVIG in January 2005.
Early diagnosis, which includes access to specialists and diagnostic procedures (not to mention a GP who is taking your symptoms seriously), is critical in reducing the overall severity of CIDP. It also decreases the costs overall to the health system. In my case, I’m lucky to have a public health care system that, whatever its shortcomings, is publicly accountable and is not obsessed with controlling short-term expenditures whatever the long-term consequences might be.
AnonymousAugust 29, 2009 at 3:43 pm
Hmm. How long is a piece of string?
For me, the symptoms started in 1999 with an odd feeling in my feet. I assumed these were caused by ill-fitting shoes, too-long hikes (I used to hike ten miles at a time), etc. In early-2000 the symptoms started in my hands, so I went to my GP. She checked my reflexes and sent me to a neurologist. When I saw her a few months later, she started tests that took me to August 2001, when I was then diagnosed with CIDP.
PS: The following is a rant against television doctors and is based on something that happened a few days ago that I won’t go into. Regrettably, the diagnostic skills of Dr House, particularly those that only take a few days, are a myth. (Happily, most of his regrettable bed-side-manner skills are also a myth.) CIDP is a rare autoimmune neurological disorder. Like all rare disorders, it’s hard to diagnose — the symptoms overlap a number of other, more common disorders and all these have to be ruled out before CIDP is diagnosed. Waiting for a diagnosis is hard, but it’s better than getting a wrong diagnosis.
Okay, rant over.
AnonymousAugust 29, 2009 at 10:35 pm
When I was ultimately ‘diagnosed’ it too fivek months [total 14 months from onset to treatment]…only because I would NOT/Could NOT accept the progression of my ‘benign neuropathy’! Two additional neurologist opinions, four months of various tests and I received adequate treatment. Soo now I have been going far better [but, for one really good recent set-back] far better that could be expected.
I truly wish that I had gotten those additional ‘consultations’ long before the damage was done? And it was and I am powerless to complain, criticize nor educate the very first neurologist who I had trusted to make me better ultimately making things much worse.
I too, used to be very active physically. The initial medications for my pain both muddled my mind and my body in regard to healing. Reconciling my ‘past’ life with my current one is full of frustrations, but, at least, I have/had the joys that came with that life to re-live in my mind’s-eye.
IN the meantime? We do what we can to educate other treating doctors about our condition[s] and get along without ever giving up!
AnonymousAugust 30, 2009 at 3:48 pm
not having a diagnosis is like standing in a room with the lights out and you know some sort of monster is loose in there. you would hope that when the lights turn on it is way across the room and can be contained in a jar or smashed with a shoe. but you are also aware of the possibility that when the lights turn on it could reveal a humungous monstrosity, standing two feet away from you, ready to devour you whole. too late to run.
AnonymousAugust 31, 2009 at 7:47 am
I guess I was extremely lucky in a way…I went from totally normal to totally bedridden in just under 3 months…went to the ER and got very lucky and had the right neuro resident on duty that day and had an initial dx. of GB that night. He ran more tests that night than my reg. dr. had during the couple months before when I started not feeling right. Had the final dx. of CIDP within 3 or 4 days of going to hospital and was released to the rehab. hospital after about 10 or 11 days.
AnonymousSeptember 1, 2009 at 1:20 am
Took over 7 years from a major onset to being bedridden. The pain was all I knew. Doctors run from patients who have pain.Was diagnosed with Fibromyalgia and thought that was it. Just by accident went to a neuro who was sharp. Been on IVIG for 4 years.
Yes, having good doctors is important. I didn’t have them then.
Read quite a lot of here about how family/friends react when you’re ill and not sure why. Then how they react when diagnosed.
AnonymousSeptember 1, 2009 at 9:58 pm
numb toes in 1989. undefined peripheral neuropathy diagnosed. told to quit drinking and remove stress from my life. 1995 EMG re-confirmed PN, and neuro eliminated a lot of stuff, but no diagnosis. 1999 confirmed worsening, 2000 diagnosis and treatment started.
AnonymousSeptember 2, 2009 at 9:43 am
in 1994 I was diagnosed with severe spinal stenosis which required laminectomy back surgery. Several weeks to a few months after, I started developing CIDP symptoms, which neither I or any of my Dr.’s knew or thought about. It took 4 full months for me to recover enough to get back to work. A few years later my CSF was just slightly elevated & a full EMG at a University Hospital that showed chronic, progressive damage occurring in my legs was attributed to nerves cut during surgery. One of the top doctors at their MS Clinic actually said, Go out & live your life & come back & see me when you can no longer walk. I left with a perscription for 25 mg of Amitriptyline. In the 15 years it took to get my diagnosis I went through 3 GP’s, 2 Carpel Tunnel Surgeries, a rhumatologist, and a second back surgery in 2007. Finally & unfortunately I started falling down at work due to loss of balance (May 2008). By this time I had stopped driving. I called my wife & told her to pick me up & take me to the ER at our hospital. A 3 week stay there & 2 months of outpatient PT & I was still no better. Ultimately I was sent to another, (different), university hospital and finally EMG’d properly which led to the CIDP dx. Without meaning to sound cliche, it was a long hard road and not anywhere near what others have told about on this post. What I found most disturbing about this disease, is that you must be your own self advocate. It is easy and aggravating to see when a doctor is patronizing you. Holding your hand and giving you their “bedside” manner when they have convinced themselves that their is nothing that THEY can find medically wrong with you. It is most important to be persistent when communicating with doctors & adamant when you know they are not “hearing you”. I had to INSIST on further medical treatment for finding the proper dx. They wanted to send me back to work with “accommodations” & follow up a year later? Huh ? I could not drive or walk due to the severe sensory symptoms. I thought I’d never tell the above on this forum because I did not want to come off sounding like a complainer. So many other folks have had such a harder time & I have found a Great Respect for all of you! Ultimately, I’m glad I got it off my chest.
AnonymousSeptember 2, 2009 at 10:04 am
From another Jeff here who has had neurological (and I think neuromuscular) issues for several years, I am still searching. I’ve had some minor imbalance issues, very minor sensory issues (mild burning and tingling).
My muscles are slimming in all limbs, and I have perceived but real weakness and muscle shaking. I am still highly functional fortunately but I am really wondering if you had any motor issues (atrophy and weakness).
Thanks for sharing your story. Encourages me that even though this is BAD, it might not be the WORST.
By the way I’ve had that “you are fine – it’s all in your head” speech so many times enough enough to make you sick.
AnonymousSeptember 2, 2009 at 8:23 pm
I had 2 of the top neurosurgeons say I needed TWO back surgeries for spinal stenosis and then I’d be fine. The recovery for each would take one year. After seeing how crippled back surgery made my dad I dug in my heels and said no.By accident I went to see a neurologist. He turned out to a neruomuscular specialist and knew immediately it wasn’t my back. He said I am going to find out what you have but he thought it was too late to help.Where had this man been all those years???
One of the neurosurgeons said I’d crawl back when the pain got so bad.
I really stated having symptoms in 1997.The doctors blow me off and then sent me to a pain clinic. I did have advocates but we didn’t know where to look. It was a maze without a road map.
I recently read a book on how physicians think in boxes. They may think our illness is Box A then maybe Box A-2 then Box A-3. They just can’t move over to the idea it’s Box B or Box C.
I’m sending JJM a PM.
AnonymousSeptember 4, 2009 at 11:13 am
Jeff, glad to know you.
In answer to some of your questions, (I hope),… when my regular neuro was at a loss, and at my wifes, more than mine, adamant insistence, he decided to send me to a Neuromuscular Disease Center affiliated with UIC Med Center in Chicago. These folks had me take a special EMG administered by 2 doctors who’s specialty was this test only & it’s interpretation.
During the administration of the EMG, interactive questions were asked by the 2 doctors each time a reading was obtained. This was to clarify or to confirm the readings as they were obtained. I found it impressive, that they could take a reading, and then say something like, “you are having problems with grip in your left hand with the last 2 fingers being worse than the rest. When they got to my legs, after the first 2 needles, they said your legs are NOT happy & it’s chronic. They kept my wife in the room through the whole test & asked her questions and asked if she agreed with the answers I gave from time to time in order to get a more objective picture. What I guess I’m saying here is that these neuromuscular dr.s seemed to know their stuff.
In regards to motor issues, (atrophy and weakness)… All of my doctors seem surprised at my continued ability to maintain muscle strength & very minor muscle atrophy. My issue has not been strength, but rather, stamina. (No endurance, with a long rest needed in between).
Balance issues for me are persistent. Would not even think about driving a car. Also, some days are worse around the house than others & it takes very little to set it off. Some days aren’t as bad.
I, like you, have bouts of muscle fasculations, (Twitching). Brushing my teeth, & shaving often makes my face numb.
Don’t give up Jeff, Keep searching, & good luck to you.
AnonymousSeptember 6, 2009 at 8:44 am
I went through the back issues first as well. I did have back surgery, and they always saw back problems, so they attributed my problems to them. As a result, when I was asked by Doctors “what do you think is wrong?” I would always talk about the back, because that is what I believed. As a result the Dr.s focused on the back and dismissed other things because there was a back problem.
Once the problem was obviously more than a back issue they looked elsewhere. One Doctor said something like, “When you are in the ocean, look for fish, not gazelles.” I think Doctors work that way, look for the most common thing first, and don;’t look for things that are uncommon. That philosophy is probably good, but doesn’t work for us in the rare disease arena.
I am sorry that you suffered for so long without a proper diagnosis. I am happy that somebody looked deep enough to find the correct answer for you and that you can now get some positive treatment. Let’s hope there are better days ahead !!
September 6, 2009 at 8:20 pm
Hi JJM Jeff,
I used to live in Alsip. We go to Rush for my son. We recently had our port taken and a new one put in at UIC. Actually, I went to UIC. do you take ivig?
Dawn Kevies mom
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