Recently diagnosed but unsure if I have CIDP or not

Hey RedRaven,

My mom started out several yrs. ago taking sq. B-12 q 2

wks. for pernicious anemia. I am able to give them at

home. Now she takes it once a month usually, but if she

starts noticing her eyelid, lip or leg muscles twitching, she

takes it at 3 wk. intervals. Her internal medicine MD is

in approval of this.

As for the CIDP , it is a dx. of omission pretty much. And

yes that sucks!…….Your cold hands & feet may be from

your incompletely resolved anemia. But… It put up a flag

for possibly Raynauds Phenomena … I am just thinking outloud.

Take care, Jan S.

If you haven’t had taken any kind of immunomodulator (IVIG, steroids, etc) and you are only taking the B12 & notice significant improvement then I would guess your problem is the anemia.

Most people with CIDP have some kind of numbness & tingling. The muscle twitching can be normal with CIDP but I don’t think everyone gets it.

CIDP does not relapse/remit on a daily basis. It’s a longer process than that.

There is no 1 test to confirm CIDP. Basically if you have inflammation showing on an MRI of your brain and/or spine, have protein in your spinal fluid & slowed nerve conduction in your peripheral nerves then you could possibly have CIDP. Sometimes you don’t have to have all 3 but most will have at least 2.

If I were you I would go to another dr.

Kelly

A spinal tap is another diagnostic tool, but not everyone has an elevated protein. There is also another procedure called a nerve biopsy, but it has its complications. It is somewhat antiquated with all of the other tests available, but if you have no other dx results other than the nerve cond and clinical symptoms and the doc wants more concrete eveidence it may be your only option. Some on the site have had a bad time of it after the test some have not. Some have constant pain at the site and some with other conditions susch as diabetes probably have a longer wound recovery. It consists of taking a punc of skin around your ankle area and the look for onion bulbing. Each layer would indicate a new process and then a healing over. It is a clear answer, but the test itself takes careful consideration based on what some members here have experienced after. If the doc is sure it is cidp, another way to confirm the dx would be to treat the cidp properly. If you were to recieve the ivig, you should see improvement w/in the first treatment or a few more threatments thereafter. I have noticed many on this site that do get B-12 while getting treatment. If it helps, go for it! Raynauds as suggested earlier could be a consideration. One of the symptoms is the fingers turn bluish or red. Try to google it. Many on the site have had carpal tunnel surgery because of circulation issues, only to have been misdx and later found out the symptoms in the hand were indeed caused by cidp. So many diseases overlap, it is very difficult to r/o one and make conclusions. Good luck to you!
Dawn Kevies mom

Another thing with most CIDP and variants is that the symptoms are on both sides of the body. Both legs equally, or both hands.

Everybody else hits the mark about testing etc. Basically it is a diagnosis of what is left over after everything else is removed.

I am happy the B-12 has made some difference.

Good Luck
Dick S

Hi Redhaven! I also have Pernious Anemia! But have CIDP too! The symptoms to me that you are describing even though I am not a doctor here and just giving you my opinion.

Depending on how long you went having the anemia it can cause nerve damage and all the symptoms you described. I take B-12 shots every two weeks for mine plus the Sublingual Tablets that you slip under the tongue! That really helps alot. I did the same exact thing you were doing but at that time was not having CIDP issues! Only the B-12 problems!

Bad thing about having this B–12 is because it may have caused Neuropathy you may need something to help ease that neuropathy by taking maybe Lyrica or Gabapentin to settle down the nervous system.

I would keep insisting with the doctor to give you shots every two weeks. I give myself my own shot now which saves on doctor visits. But because it caused nerve damage it takes a while for those nerves to heal back up.
PT helps get you stronger but if you have a swimming pool even if it’s a cheapy that will help alot!

Every now and then also ask him to check your B-12 levels! if the levels are staying the same and are a good number then you know there is something else going on. But the only way you will know that is if you see those levels a good number but still having problems with the nerves. Which may take several more months to regenerate! If they have not improved in a few more months and you are still getting problems then get checked out!

Have you been checked out for Celiac Disease. Very common today and alot of people get a vitamin problem with it causing these same symptoms. Celiac is a allergy to foods that carry glutens. So many people go undiagnosed with it each year and boy can it cause problems.

But right now, I think it’s not enough B-12 getting in your system. Once a month was not enough for me either and when the two week mark hits, I have to have my shot! Hugs
Linda H