What do I ask my doctor?

I would ask what the long term treatment plan will be. Is it steroids or IVIG? Then you need to talk about the benefits & risks of both.

In my experience with dr’s it’s best to say “I want….” instead of asking for what you want. So if you want to have an MRI then you say “I’ve been doing some research & I feel it is essential that I have an MRI, when & where can we schedule that?” Saying it that way lets your dr know that you know what you are talking about & you are ready to take control of your health care.

Also ask your dr how many other patient he/she has treated, what the treatments were & what the long term outlook for those patients is.

Remember dr’s work for you! You need to make sure you are getting a dr that knows about your illness & can treat it appropriately.

Good luck!
Kelly

were you definitely diagnosed with GBS/CIDP…if not then the only way to diagnose is with a spinal tap..they need to check the protein level in your spinal fluid..

Not sure why you are asking for an MRI. IVIG doesn’t work for everyone and if that’s the case maybe he should explore plasma pharesis (if you have been definitely diagnosed).

If your neuro isn’t familiar with this illness you might get a copy of the handbook for physicians and give it to him. (as long as it wouldn’t offend).

Take care and good luck

I agree with Kelly. Ask him how may other patience he has treated with similar symptoms and what their progress has been. Stormy bring a good point about the spinal tap. You can still have CIDP with normal spinal tap, but if there is a high level of protein in the spinal fluid there is a good possibility that you have GBS or CIDP.

If he seems vague about the number of “similar” cases, you definitely need to get a second opinion. GBS and CIDP is normally bilateral. That the symptoms appear on both sides of the body [both legs, arms]. When I looked at your past post, I noticed that you said he did only test on one side. If you had symptoms on both side, you might want to ask him why he tested only one side.

Fatigue can have many causes. If you get up and go has got up and gone, that one thing. However, if at the same time you feel sad, it could be a sign of depression. Unfortunately CIDP can some times be diagnosed as depression and they begin treating the symptoms instead of the cause. So you need to take some time before you see him and write down how you feel and review it a few times until you think is says exactly what you what you are feeling.

Good luck and keep you in my prayers. Let us know how you make out.

All Smiles,

I have read your treads, this one and “new and have questions”. I won’t try to diagnose or confuse things but a few things have caught my attention and the order of things.

Not all Emg’s are created equal. One emg on your leg stated demylenation. If that shows up it could be hereditary or not. All four extremities should be tested to compare. Most doctors only do the ones you complain about though. Interpretation is critical. I was told ulnar carpal tunnel in the wrist by the emg tech and basic neuro. A later emg by a highly competant neuromusculat doctor said focal demylination above the elbow?? Go figure.
The type of fiber damage tells them alot.

Diabetes-I wasn’t sure if you did the OGTT 2 hour test. Overnight fasting bloodwork can be fine. the glucose drink and test every hour test is best.

I thought it odd that you had IVIG and had not mentioned the Spinal Tap or Brain MRI. If things are hereditary, the IVIG or steroids probably won’t work.
Or did they tell you that the IVIG won’t work?

I was told by my neuro that hereditary neuropathy’s can subside and you can make improvements but basically the body doesn’t repair the damaged area’s
or at least that is my understanding. Having a family history of CMT is affecting things although you tested neg. I guess what, like 20% can’t be found on the test. If there was no family history, they don’t care about the 20%. Being there is family history, they may not believe your negative.

They looked at my elbows for scoriasis. scoriatic arthritis can mimic things but I don’t think it damages the nerve like the one EMG. Multiple things may be in play.

Also bending your legs seems difficult. Don’t know there.

Yes, note all your questions and ask them one by one unless they are answered as you go through the appt.

Question the demylination, that is key to what you are experiencing. with any demylination comes the need to test further and other area’s of the body if it is hereditary or not. One would think to at least know the extent of the situation. Good Luck on Your Visit. We will all be thinking about you!

You started off saying that there is a strong family history of CMT(-like) and that your neurologist says that you have a hereditary demyelinating polyneuropathy. It also sounds like they have done a number of tests to figure out what else might be going on–since even autosomal dominant inheritance is only 50%. If your neurologic symptoms are like other family members (realizing that there can be a good deal of variability in severity and onset even with the same genetic change), your doctor might NOT do a lot of other tests like an MRI and spinal tap. These might not be necessary with the family history that you have. My little suggestion for you specifically is to ask what about your symptoms and course of disease makes him/her think that this is indeed hereditary. Ask what other hereditary things than “classic” Charcot-Marie-Tooth this might be and how many of the hereditary neuropathies cannot be found by genetic testing?
Personally, I would start of saying that you are confused about why he/she said that this is hereditary polyeuropathy and yet the genetic testing could not confirm that and could he/she explain that to you more.
I missed it if you have gotten IV IgG. IV IgG will not help the hereditary polyneuropathies because the reason for them is not due to attack by the immune system on the nerves. My guess is that you were told that IV IgG would not help and this is why.
Good luck. WithHope for a cure of these diseases

When I came down with the gbs/cidp, they did lp catscan mri.. I think an mri helps them to rule out other diseases and disorders…deanop

ask your doctor if you could try another brand of IVIG.
I know that some brands work better for me than others, and of those that work best, I get different side effects.
Doesn’t hurt to ask.

Hi,
Some things to remember with future neurologist appointments. You may find that your doctor will say “I don’t know” to questions and it probably is because he doesn’t know. That’s kinda the meaning of syndromes as opposed to diseases or injuries. If you came into a doctors office limping and complaining about your ankle, it was bruised and swollen, the doctor would SEE the signs and know you had a sprained ankle, but he can’t see inside us and know what’s wrong. How you feel must come from you!!! It can help if you keep a diary so you have a record of how you feel.

I agree with Liz on this issue! Keeping a log of what goes on with you and also writing down any questions that you get when you are home. You would be surprised how many questions I ask myself just being home about what is happening to me. Then when I see the doctor, I have forgotten half of them to ask. I now hand my doctor my papers every time I see them. It helps them answer faster and saves time on them and you both. Good luck!

Wishing you my best and hope all goes well. I had a steroid injection a few years back with my spine and that required a spinal type of method. It was not that bad but being awake was my problem. Fear of coughing or sneezing! But it’s really not that bad! You will do fine! Good luck!

All Smiles,

You’ll be OK with the LP. Just drink alot of fluids along the way. just not so much your going every 10 minutes. If helps replenish the spinal fluid. I went in on short notice and didn’t drink much so they made me sit through a bag of IV before I was cut loose. I had mine on Christmas eve. 🙁

All you feel is a little pressure. they will numb you up locally. The sooner the tests are done the sooner you’ll know where you stand. Good Luck

All Smiles,
I wish you well. Good Luck. Now I will be honest with you, I did not have a good experience with my spinal tap, but I was an absolute basket case because it was done on the day I went paralyzed & I was scared to death.
I was having a hard time relaxing so if I can giveyou any advice it would be try really really hard to relax :rolleyes: and of course what TJRPT6 said drink alot of fluids.:)
Hang in there & keep us informed.

Its Funny now but it wan’t then. I was in the ER on Christmas eve. bad enough. the doctor who was doing the LP was like a fill in or something. I had this bad feeling right. So he knumbs me up, puts the curtain on. I am in a brand new little mini hospital called Westfield. Started by a doctor who does eppidurals, pumps and all kind of Pain Mngt stuff, so I thought it would be cake. Not.

the Doctor didn’t seem real confident, so he starts pokin a #23 needle in me. and can’t get through the tissue. 5 pokes later he leaves the room and let me in the fetal for over an hour. Finally I get pissed, get up with the gown on, grab my clothes and sneakers, poke my head out of the room and start tip toeing to where my wife and daughter are waiting. There is like nobody in the place cause of Christmas.

Then the Pain Center Doctor who Built the faciltiy come in wearing a business suit and asks me what the heck I am doing and where I am going. I tell him the doctor doing my LP doesn’t belong doing this and that I am OUT of Here.
Apparently the Temp doctor called the Boss and the owner of the Hospital center. this guy has stuck more people than an acupuncture tech.

We started over, the Man with the golden hands got the juice right out. He was really good. What an experience though.

Word to the wise, Don’t get a LP on Christmas eve. All the good docs are off drinking egg nog.

All Smiles,
Kevin has had two. The first one worked, the second was an intern. My BEST advice would be to ask for a valium or something to relax you. You will be asked to be in the fetal position. Stay as still as possible. If you do get a valium, be sure the time does not pass too much. The second time Kevin had it the intern went to lunch and came back, by then the local was wearing off and the valium long passed the drowsy phase. If they do not get you by the 2nd stick, demand another doc or better yet aneasthesiology (spelling) Besides fluids, another VERY important thing to do is remain flat, lying down for as long as possible. If you are doing this outpatient, they should have you lay flat a minimum of 1 hour. If you are then driving home, with someone, put the seat as far back as it can go, or even lie down in the back. Try to lay the remainder of the day. You may be lucky and experience no pain, but better to not find out. They told us no shower or bath for 24 hours, don’t know if that matters, but it couldn’t hurt. Good luck to you.
Dawn Kevies mom

Too funny Tim! Better not forget New Years Eve too! Ohh that would have been bad! LOL

Yes, Like Dawn said,

Lying flat is important, don’t tense up, and the after care is important too.
They should give good instruction but basically don’t drive. get right home and don’t move around alot to make sure the hole stays sealed up good.
by the next morning you’ll be fine. Good Luck-Sorry about the bad experience story I put in there. I am sure yours will be better that that.

All smiles, I have had two spinal taps and both went well with no problems with fluid obtained right away and no problems afterward. I just wanted to let you know that it can go smoothly and well. I asked two of my friends to come to the first time because I was nervous and one kept me laughing most of the time and helped a lot for me not to be nervous. She is also a nurse practitioner and has done thousands of spinal taps and said she would be glad to step in to do it if there were problems or the resident didn’t know what she was doing (or started having contractions at that time since the resident looked nine months pregnant at that time!) If possible have someone go with you that is really supportive to you. Drink plenty of fluids the night before. Curl up into a ball as much as possible. This opens up the spaces between the backbones so that it is a lot easier. Lie flat for at least one hour after the spinal tap before getting up. Drink lots of water afterward and like other said try to lie flat as much as possible for several hours. A lot of the time it helps to drink caffeinated drinks–like sodas to help prevent a headache. We even give some of the teens IV caffeine after spinal taps (for chemotherapy) to help prevent headaches in the Pediatric Cancer clinic where I work. Consider taking ibuprofen or Aleve after the spinal tap if a headache starts. Take it with you to take before the headache gets bad. It might be better not to take before the spinal tap. Gently ask if they are sure about all the tests that they might want to do on the spinal fluid. As a teacher, I tell people the the most important parts of doing a spinal tap are having everything ready, having a long enough needle, and having the patient in the best possible position.

the other test you may be having (“EMG for the brain and spinal cord”) might be somatosensory evoked potentials. I had that done and it is a little uncomfortable because, like the EMG, it has little shocks to make the nerves react. To deal with this, think about that it will not last for long and keep thinking that this hopefully will give answers. I kept repeating to myself–I hope this gives answers and this helped me get through nervousness and times of discomfort with all the testing. I also thought about things important in my life that I wanted to get back to doing (not as sadness, but as a reason to put up with the tests with hope to get the best possible answers).
I hope all goes well for you and that you have peace. I would guess from your name that you are a positive and caring person. Use this as the strength it is.
WithHope

All Smiles,

I am a Michigan Liaision for the foundation. If I can be of any help or can answer any questions, please feel free to call (734) 929-4653, I am always happy to help however I can.

Jerimy