Recently diagnosed but unsure if I have CIDP or not
AnonymousJune 21, 2009 at 5:21 am
I am so confused & really don’t have much faith in my Drs.
I was diagnosed a couple of months ago, had a nerve conduction test, blood tests & an MRI. The bloods were all normal & MRI was all ok too. Neuro has made his diagnosis on symptoms & the nerve conduction test.
I have pernicious anaemia & believe my symptoms are related to that so started on extra b12 shots & it helped all of my symptoms to the point where I have gone from having real trouble walking, awful balance & being unable to lift even a carton of milk to back to normal in less than a month however the symptoms creep back only 7-10 days after my b12 shot & the neuro says the b12 has nothing to do with my recovery (even though he was really surprised at how much strength I had gained since the last visit) he thinks its just coincidence. I have had 4 shots since my diagnosis & it has been like a rollercoaster of getting better after a shot then symptoms returning & getting better again after the next shot. I am almost normal for one week out of the month & useless for the other 3, my dr refuses to give shots more than once a month.
I have read a lot of the posts here & hope I can try to get some answers.
I have not had any treatment other than the b12 shots .
is there a test that can confirm CIDP?
I don’t have any pain at all & no numbness or tingling in my limbs, my hands & feet are always ice cold & hard to warm without a bath or shower.
I do have some twitching but its all over the place in my eyes face tongue stomach back as well as limbs is that a normal CIDP thing?
Is it normal for symptoms to regularly come & go weekly or fortnightly?
Am I in denial? or could I have been wrongly diagnosed?
Any help would be greatly appreciated.
AnonymousJune 21, 2009 at 7:43 am
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.
AnonymousJune 21, 2009 at 10:37 am
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.
June 22, 2009 at 1:31 pm
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
AnonymousJune 22, 2009 at 3:22 pm
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.
AnonymousJune 23, 2009 at 3:05 am
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
AnonymousJuly 2, 2009 at 10:04 am
Well I had my last b12 shot 10 days ago, amazingly i am still feeling pretty good, I say amazingly because I am currently getting over the flu(possibly the porcine variety but not tested) & I should be feeling much worse. I still have a fair bit of strength & no jelly feeling in my arms or legs at this stage.
I have been panicing a bit as I have read some people have relapses after the flu.
LindaH ( 🙂 I’m a Linda too) I have had a celiac test I think & it was negative. My serum B12 levels are high round 1300 I think maybe because my iron has been seriously low I have not been absorbing the B12, thats my theory anyway.
My Dr has agreed to a shot every 10 days now until I see the haematologist, I’m hoping that seeing as I have gone 10 days so far without too many symptoms I might be able to stretch it to 2 weeks.
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