Becca, it sounds like CIDP to me, especially if the IVIg helps for a short period of time and then the symptoms start to come back. In fact your symptoms sound similar to how mine started out. I hope you get to the Mayo for a proper diagnosis. It took me a year before I finally got to Johns Hopkins and got diagnosed. Don’t give up, keep trying for a diagnosis and if the IVIg worked then I would ask to stay on it for a trial period until you get to the Mayo for a diagnosis. Ask your neuro to make sure he/she puts suspicion of CIDP on the request or else insurance might not cover it.

Good luck,

Julie

Becca,
I remeber you from a while ago, you have not posted lateley, I just figured you were ok. I am sorry to hear you are in a medical limbo. I hope you get answers soon. I will say a prayer for you.
Dawn Kevies mom

There is a group of CIDP’ers who do not have elevated protein levels in their spinal fluid, have normal EMG’s & never lose their reflexes. I honestly believe with time this little group will eventually have an official title of an obscure variant of CIDP. This group of people are only dx’d after receiving IVIG or PE & getting some relief of their symptoms.

That being said, I would go back to the neurologist to beg & plead for more IVIG. If it worked for you before, why can’t it work again? Maybe you’ll never get an exact diagnosis but you’ll be getting treatment which will stop the progression of whatever you have – which does sound like CIDP to me.

Ask for a loading dose which is usually 5 consecutive days of IVIG. Then go back & report to the dr any improvements that you have. Just that alone should convince him/her to stay with this course of treatment.

I really hate to see people not getting a diagnosis & continuing to deteriorate. With any autoimmune disease the earlier a treatment program is established the better the long term outcome.

If your dr is going to take a lot of convincing then Google “CIDP, CIDP & normal EMG, CIDP & normal reflexes, etc”. Then print out every single article supporting your theory of CIDP & take it with you to the appointment. Some dr’s require the evidence to be put right in front of their faces like that.

Good luck.
Kelly

Hi Becca,

I was doing some casual reading tonight, and the article rang a bell – I thought of you immediately.

[url]http://www.medicalnewstoday.com/articles/92472.php[/url]

[QUOTE=article]
Myasthenia gravis affects roughly 400 per 1 million people. The severe muscle weakness caused by the disease brings a host of other complications, including difficulty breathing, difficulty chewing and swallowing, slurred speech, droopy eyelids and blurred or double vision. By preventing or reversing the muscle weakness, the other symptoms are prevented or reversed as well.
[/QUOTE]

I then looked up Mg:

[QUOTE=wikipedia]

fluctuating muscle weakness and fatiguability
chewing, talking, and swallowing are especially susceptible
neck and limb movements can also be affected
unstable or waddling gait, weakness in arms, hands, fingers, legs, and neck
Often the physical examination is within normal limits

If the diagnosis is suspected, serology can be performed in a blood test to identify antibodies against the acetylcholine receptor. The test has a reasonable sensitivity of 80–96%
[/QUOTE]

And – it responds to plasmapheresis and ivig:

[QUOTE=wikipedia]
If the myasthenia is serious (myasthenic crisis), plasmapheresis is used to remove the putative antibody from the circulation. Similarly, intravenous immunoglobulins (IVIG) are used to bind the circulating antibodies. Both of these treatments have relatively short-lived benefits, typically measured in weeks.
[/QUOTE]

It may be worth taking a look at – do you still have an ongoing relationship w/ your neuro? One thing that you might also want to do, is gather all your medical records together and find out about the results in those tests that you took. There may be hints that, all together, point the way to a diagnosis, or at least, you will have baselines to compare to when you get to Mayo.

BTW, I am shocked your doctor just quit on you because “he” couldn’t find anything wrong! Sure hope it wasn’t the neuro – that’s why people go to specialists.

Hope this shot-in-the-dark helps,
best wishes for a good outcome,
cd

Becca, I agree with Kelly’s Mom that we’ll eventually end up being a subcategory or something. However, I went through the same progression as you – at first my local neuro thought CIDP, then changed it to MG but tests showed it was not MG so neuro sent me to Rheumatologist who ran tests etc. etc. and eventually I ended up at Hopkins with a neuro who says I have an “atypical” case of CIDP “until a different diagnosis comes along.” So you say you have tried to get IVIg again but cannot – is it your insurance company that is denying it? Maybe your doctor(s) need to work on their language then, even your Rheumatologist can order more IVIg, particularly if it worked. I’m so sorry to see you go through this – it’s eerily familiar to me. I did get better on my own between relapses but never enough until I started getting IVIg again last fall. Since then I have slowly begun to get better and better rather than just getting back to functional so I hope you will be able to get back on some kind of treatment. If you are having trouble getting the IVIg how about a short course of prednisone to see if it helps? That might be easier to justify to your insurance company and most people tolerate it reasonably well. Just a thought for some relief…

Take care,

Julie

P.S. My first neuro kind of quit on me too but it was because he was stumped, couldn’t figure it out and suggested I go to either the Mayo or Hopkins. I appreciated his willingness to admit he was unsure and to send me to someone else. I plan to go back to him eventually when we get me on a regular cycle as it’s a long drive to Hopkins and my doc is more of a research doctor than maintenance.

Sounds like I may someday fit into this “subcategory” also. It is VERY frustrating! I really can empathize with everyone who cannot get a firm diagnosis — ESPECIALLY when it causes them to miss out on a treatment that could help!!

Actually if you haven’t been to a Rheumatologist I would highly recommend you visit one to see if they can help with the diagnosis. Although the Rheumatologist did not find the cause of my nerve issues he did run exhaustive tests that potentially could have caused similar symptoms. There are some really weird diseases out there that can cause neurological issues similar to CIDP and GBS (like i have to tell anyone here) and it’s worth getting the 180,000 blood tests to eliminate them. (just kidding, but it was a lot of tests) It’s been awhile but some of the diseases he eliminated were Sjogrens, Sarcoidosis, Vasculitis, and Lupus, there were many more but I remember these as having the potential to cause similar symptoms.

What the Rheumatologist did do for me was 1) find some genetic mutation I have that makes me susceptible to blood clots in my small veins which is good to know since I get IVIg treatment and don’t move around a lot, I now take low-dose aspirin and Foltx (a B-vitamin complex) to work around that issue… 2) the doctor also kept encouraging me to get a second, and then third neurological consult. He was convinced that it was a neurological issue and when I felt like giving up he kept encouraging me to try Hopkins. At any rate, a Rheumatologist is a natural addition to your pack of doctors as GBS/CIDP is an autoimmune disease and as my Neurologist told me – frequently they like to travel in pairs so once you have CIDP you may be more prone to getting another autoimmune disease like lupus. In addition, since you responded to IVIg I am suspicious that there is some autoimmune component to your illness and since your neuro can’t find it you should go to a Rheumatologist as your next detective.

I am assuming they have also eliminated Lyme disease – if they test me any more for Lyme I’m going to turn green – but we live in the Lyme capital of the United States and so many people have Lyme around here we have doctors that specialize in nothing BUT Lyme. Lyme can be very hard to diagnose (as they keep telling me test after test) and frequently mimics many other neurological diseases.

There were many times when I wanted to give up the medical mystery tour but I had people who believed in me, who wanted to see me better, who went to appointments with me and encouraged me to keep going when it all seemed a waste of time and good veins. You are going through what was the hardest part for me, not knowing what is wrong can make you think you might really be crazy. Don’t give up on your search, take breaks from it if you need to, but keep trying. If you don’t find any answers with a Rheumatologist then head over to Infectious Diseases and let them empty your veins for West Nile, Lyme, etc. Any doctor can also test you for heavy metals – mercury, lead, arsenic etc. – that’s worth looking at too.

If you need some more suggestions on tests and where to look let me know. I got so tired of different doctors running the same tests I finally did a spreadsheet of all the tests, when they were done, the normal and my result. It helped save me more than one stab with a needle and it’s pretty thorough in terms of what Rheumatology and Infectious Diseases think could potentially cause similar symptoms.

Take care and happy hunting! 😎

Julie

Becca,

It is so frustrating… you know we all understand. I’ve been to neuros every few years and wonder if I really have one of these other illnesses. I think I only got tested for about 179,000 diseases (good one Julie). I guess we just have to settle sometimes and deal with the symptoms we have.

For myself there are two things I have done recently that I think help, some… getting rid of sodas (mostly, it is real hard) especially the dark colored ones, and taking strong vitamins with lots of the B’s.

Keep us updated.

Becca:
I hope we are not on the same course. After lots of pushing and some crying my husband has decided to get another opinion. He will still get the nerve bioposy and hoping this will show something. What I want to know did you investigate this at all. He would not have agreed to it if spinal tap showed cidp.Did you get either of these done? I do not know your earlier threads as we are new to this.

I would like to know what some of these initals are: mg,pe’s ncs/emg’s . He has had a nerve induction test 2 times now and some blood tests,mri,and cat scan. Also on vitamin B 12 and lyrica for pain and cymbalta

I surely hope you find someone to help you. Going to John Hospkins, Mayo ,or any of these are probably your best bet. We are hoping the neurologist will send us to u of Alabama. Mr. O. as our neur studied under him.
Thanks and hope you get help
Joanf

Hello and welcome smk,

We have a wonderful supportive community, and it is because of this that we know quite a lot. Whatever advice or information you get on the forum are our personal views and experiences, and obviously not medical expert advice.

From what you write, you could easily have had GBS, SIDP or CIDP. It is so hard to understand which one you could have. Many on the forums have residuals such as pain and fatigue many many years after the original onset of GBS, and it sometimes flares up and we feel as if we are having another ‘attack’, or in some rare instances there is a reoccurance of GBS. However having said that, it could be CIDP. It is unfortunate that your doctor did not send you for a spinal tap when you first showed symptoms.

It is extremely frustrating and stressful trying to explain to doctors what you are going through. Feeling that they are brushing you off in a way takes an awfull toll emotionally and often we begin to second guess ourselves. The hardest thing is that most of us look so ‘normal’, and I’m sure thats they way people see you, and they dont understand how awfully ill we feel.

What has your neuro said to you about a diagnosis, does he have any ideas at all? What dose of Gabapentin are you on at the moment?

Smk,

Here is an article I seem to post quite often. If you have not seen it, it is well worth reading. Also, sign on to the Foundation’s homepage and request some literature, it is extremely informative, and you will get a newsletter quarterly.
[quote]

What’s In a Name? Important Differences
Between GBS, CIDP and Related Disorders
__________________________________________________ ______________________
David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ
This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.
GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration.
Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.
A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).
The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.
A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued progression of symptoms (not continued persistence of symptoms).
In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.
Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.
Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain).
Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders.
Article from the Summer 2006 GBS Newsletter

[/quote]

Sandy,

I was wondering if they have a teaching hospital near you that you could possibly go to. Often these are wonderful places to go to to get a diagnosis. Also they have some of the ‘better’ specialists and prof’s there.

There are two international chapter contacts for Australia, one in NSW and one in Tasmania. Are any of those relatively (and I use that word losely:p ) close to you? Let me know if you want their contact details and I can private message (PM) their contact details to you.

Sandy,

There is no direct test for CIDP. It is usually “guilty by association”, that is, after everything else has been eliminated …..

First off, a neuro will eliminate the most common things, like vitamin def. heavy metals, diabetes, etc. After that, he/she will attempt to classify the diagnosis through symptoms. Try to remember everything.

Then come the bigger tests. I would think first would be an EMG/NVC battery. This is essentially sending shocks through the limbs and measuring the speed of conduction, and to measure if the nerves are indeed functioning properly. A skilled team can determine demyelination and severity of loss. This will also serve as a baseline for future tests. If this suggests demyelination, a spinal Fluid test cold be done to test for proteins associated with active CIDP. If this number is elevated, and demyelination is shown with the EMG/NVC, they might start with a coritco-steroid like Prednisone. Prednisone has been effective with CIDP. If the attack is severe they might try IVIG.

A final determining test would be a nerve biopsy to definitively check for certain nerve damage and demyelinaation/remyelination.

In the CIDP process, there is an attack, where you get worse, and a type of recovery, where you get episodically better. Then an attack, and episodic recovery.

Each of these tests lead to a diagnosis. But each of these tests can yield a negative result and you can still have CIDP. It takes a neurologist with experience in CIDP to recognize the right things for a diagnosis.

Hopefully it will turn out to be something other than CIDP. CIDP is a chronic long term issue without a cure. They can treat the symptoms, but it doesn’y “go away”.

I hope you get a good result.

Dick S

Sandy,

I do not take neurontin, but from what I have read on the forum, I believe you are correct regarding the names and dosages. I’m sure someone will come along and give you more info.

I am going out of town in a couple of hours and will only be back on Wednesday, I look forward to hearing about your visit to the neuro.

That is the generic form of neurotin. I feel your frustration. I searched dr after dr for a 1 1/2 yrs for someone to help my son. Meanwhile, I watched him loose the use of his left hand/ wrist one digit at a time while the dr’s did NOTHING! My son has had a nerve biopsy and has been diagnosed with CIDP, but there are different variations of CIDP. my son does not go up and down with it. It pretty much is always present. He also gets IVIG every week and has for 2 yrs now. KEEP SEARCHING! Somewhere, Someone will help you. We’re not giving, We live in Florida and next we found a specialist is Kansas I also here there are neuromuscular specialist that specialize is CIDP at Emory University/ Atlanta GA, North Carolina, and Virginia.
Good Luck to you,
Robin

Sandy,

Recommendations: Take your Prednisone in the morning with food. It may be hard on your stomach. If you take it at night you will be awake all night. Prednisone is an immunosuppressant as well as its other properties. It should help with joint pain as it is a corti-co-steroid.

If the prednisone helps it is kind of an indicator towards CIDP, but nothing final. CIDP responds to prednisone. But so do other things.

It is a safe and cautious course of action for your neuro to take at this time.
I’m sorry, I read prednisone instead of prednisolone. The dosage is different, but the action is similar.

If you want to “treat it and move on” PLease hope for something other than CIDP. CIDP is an autoimmune disease that has no cure. You don’t want it. It is recurrent and a real pain in the butt.

My case is not the norm, but it has disabled me, out of a job, constant pain, nasty drugs, difficulty walking and doing things. It is no picnic. I am not whining here, just stating facts. I hope you have something else that you CAN treat and move on.

I am hoping for the best for you.

Dick S

Dear smk001 I also are from the same State if you wish to compare with notes or treatments. or anything to help
Kind Regards
Paul

Hello SMK,
my first symptoms, slight numbness in both toes, started in 2001. Since it kept getting worse year after year, I’ve seen an internist and several neurologists over the years, in Thailand as well as in the US. They all did nothing but the standard neurological tests, reflexes etc., except an MRI of the brain one time which showed nothing. The best they ever came up with was peripheral neuropathy with abnormal gait, cause unknown, no treatment available. It was very frustrating because this “thing” kept progressing. After returning to Colorado in 2005, I finally found a neurologist through the internet at the University of Colorado who was specializing in neuropathy. She finally did the “correct” tests, EMG which actually showed demyelination, spinal tap which was abnormal, several blood test including a SPEP (Serum Protein Electrophoresis) and immunofixation which shows the different B cells. These last ones are very expensive and the hospital balked at it at first. She then sent away for another test which showed that I have a CIDP variant called antiMAG IgM neuropathy or PDN, Proteinaemic Demyelinating Neuropathy. I never heard of CIDP or PDN before. Symptoms of PDN are very similar to CIDP but it is primarily sensory and progresses vey slowly. Just like CIDP – and this is important to know – unlike MS it is symmetrical affecting both sides of peripheral nerves. Since last year it has advanced to both hands which are getting fairly numb. Fatigue is another annoying symptom. I am very fortunate that I have no pain at this point. I use a walker most of the time but tire very easily.

My point: perhaps you should “educate” your neurologist and ask about different tests I and others here mentioned – if he is open to it – or find another one like I did. You have one advantage I did not have until recently. You’ve heard of CIDP and you found this great support group on this forum.