A web search for Side-effects of spironolactone (Brand Name Aldactone) yields this from the Mayo Clinic website: Side Effects: Incidence not known- hair loss or thinning of the hair.

Generalized discussions here and there suggest the initial dose of Aldactone and follow up dosing of spironolactone should be closely monitored. Check with your doctors.

While reading up on prednisone I found both hair loss and increased hair growth mentioned as side effects.

Be careful with the use of Oxycontin.

Cleveland Clinic is one of the several major Medical Centers I have been to. It was the head of the Neurology Department of Cleveland Clinic, at that time, who stated “No, I don’t think you have CIDP.”

As for if you have CIDP or not, the doctors have to sort that out. Read the Dr Lewis article for a better understanding of the other conditions to consider and rule out. There are many.

Call him and ask why he thinks not. Better yet, collect all the office notes. They belong to you.

I also went to Mayo Clinic. A long time ago. One of the many doctors I saw, in fact, the one that mattered, stated “let’s give you IVIG, if you respond positively, then we have our answer.”

Times have changed since then. The major roadblock to getting IVIG now is meeting whatever criteria the insurance company that covers you has laid down. Your attending physician surely has valid reasons for not allowing the treatment.

So, go forth and find a doctor who will authorize some IVIG for you.

GH summed it up. Getting an accurate & correctneurplogical diagnosis is often difficult. Do your own web search for ‘standard criteria to diagnose cidp’ or, sign up for a free account at medscape and read all about it.

http://emedicine.medscape.com/article/1172965-overview

An article by Dr. Lewis updated in 2016. The article leads off with this: “CIDP typically starts insidiously and evolves slowly, in either a slowly progressive or a relapsing manner, with partial or complete recovery between recurrences; periods of worsening and improvement usually last weeks or months. Most experts consider the necessary duration of symptoms to be greater than 8 weeks for the diagnosis of CIDP to be made.”

Hello Sandra,

Welcome to the forum. You may be aware of the Immune Deficiency Foundation.

Their website is: http://primaryimmune.org

They offer a physician locator service at: http://primaryimmune.org/services/locate-a-physician/

However, do your own web search for Immunologist and you’ll likely get the same list the IDF will send you.

I too have CIDP and I believe that I developed a compromised immune system characterized by very low IGg levels after taking immunosuppressants.

However, I see an Immunologist for the immune condition, not a neurologist. Those are two distinct specializations. The only interaction between the two diseases that I just made up is that they are part and parcel of the same system but act through different agents.

A quote from the IDF: “Common Variable Immune Deficiency (CVID) is one of the most frequently diagnosed primary immunodeficiencies, especially in adults, characterized by low levels of serum immunoglobulins and antibodies, which causes an increased susceptibility to infection. While CVID is thought to be due to genetic defects, the exact cause of the disorder is unknown in the large majority of cases.”

Notice the generalization… ‘thought to be due to genetic defects…’ Maybe so, but mine did not manifest until the various CIDP treatments were in play.

Some people find relief from the side effects of IVIG:

1. As you stated, slow it down. Must infusion centers probably have automatic, digital, battery powered pumps by now. It’s hard to verify the rate the nurse puts in. If necessary, have your doctor write an order for the desired rates. Some patients simply cannot handle the IVIG manufacturers’ stated rates.
2. Drink a lot of water the day prior to and the day of infusion.
3. Take an NSAID- ask your doctor
4. Pre-treat with benadryl. Some people take their own, some people get an RX for the infusion center from their doctor.

Ask you doctor about 3 and 4.

I see in your reply that the doctor is already giving him more IVIG. And, I understand you wish it were you. I bet if it were you he would wish it was him.

I realize you are still working so how much you cannot do, that is, limits on your performance, seem a little out of your control.

If you have sensory involvement it’s expected you would feel that damage and the corresponding recovery and relapses.

There are probably several things going on simultaneously with your neuromuscular situation. First of all is the damage to the nerves themselves. This may take the form of simple myelin damage, or it may progress to include axonal damage and, sadly, axonal loss. I think of it as rats chewing on the wires to my motors. In the sections where the rats ate all the way through, my motor is not going run.

Secondly, I do not mean that p/t is not useful rather it has similarities to a spinal cord victim. The signal will not go through. That section of muscle is not going to respond because the signal is gone, at best, not correct. Imagine the muscle fibers with good nerve conduction still working trying to do what it is you could do before. Not gonna happen because not all the muscle fibers are firing correctly yet.

Thirdly, You’ll self-discover your limits. Keep track of them and try not to exceed them. Whenever I did I paid a bad, severe cramping and increased fasiculation price. From finger cramps to leg cramps to muscle failure your body will yell at you when you’ve done too much.

Recovery is time and treatment dependent to the extent there is not irreversible axonal loss. Myelin and axonal recovery takes time. It occurs sequentially from your core out, not concurrently everywhere at the same time.

Same as Jim-La I have a list of things I was previously unable to do. Turn a key in the ignition, pull zippers, do buttons, hold chopsticks, open a water bottle, hold a pencil, open those stupid little packs of pretzels or peanuts on the airplane and on and on.

I am able to do most of those things now. As Jim stated, little by little over at least 3 years. And, same as Jim, I have areas of loss that will never recover.

There is a different condition previously called ‘tulip-bulb digger’s palsy’ or ‘potato-grubbing palsy. The idea was that if you spent too much time on bent knee you might get numbness and even foot drop. It’s the reason for some of us to have the PM-22 gene deletion genetic tests.

How is this relevant? Be aware that if you have myelin sheath damage to your sensory nerves, therefore, the nerve bundle may be sensitive to pressure damage. Consider your limbs’ position prior to the numbness. In my case both of my arms are particularly sensitive to lower arm numbness at night when I’m asleep and I cross both arms across my chest.

When I’m driving with either arm on the car door or between the seat arm rests for a long period of time is also problematic for me. The peroneal nerve bundle is at risk at the point where you cross your legs.

Observe your episodes and see if you get relief from avoiding pressure points.