Waiting for diagnosis — need thoughts/ideas. LONG.

Hi Brit,

Welcome to the Forum. Wow you have quite a story there, but you’ll find out a lot of us went the long route as well trying to figure out what was wrong. I’m not really sure what to tell you about what has taken place. Some could be CIDP, some sounds like MS, the pupils uneven I am not sure about, etc.

So, in other words, I am no help:) I would probably suggest getting a second opinion from another neurologist. Also on the LP, are you sure they didn’t check for protein or oliglonal banding? You might want to request some of your records from your current neuro to take somewhere else.

I asked my old neuro if I could see someone else. He was more than happy, since we didn’t know what was going on. My current neuro is fantastic and knows what he is talking about.

The other advice, is keep a running record of what is going on with you. What you wrote already is very good. As time goes by you forget who you went to, what tests you had done, how you felt then and now, etc. Good luck to you though and let us know what happens…..Gabrielle

Wow, this really sounds frustrating. You will find that GBS or CIDP is extremely variable in different people and despite what textbooks say, there are a lot of cases that do not fit the typical pattern. There are a few things about your description that to me are a little concerning for this NOT being CIDP. 1. Vision is a central process–not peripheral. Your blind spot was very transient, so this might not really be relevant, but with CIDP you really should not get blindness (double vision, blurring can happen because the cranial nerves that are peripheral can cause these but the vision nerve itself is really a central nerve). 2. Your symptoms fluctuate more rapidly than I have heard in other GBS/CIDP cases. Most of us have changes associated with fatigue over the course of the day or after doing too much. 3. Your symptoms are not broadly distributed. GBS/CIDP is often stocking and glove or pretty big patches of area at the ends of the arms or legs and symmetric from one side to the other. Lots of people (including me) have some assymmetry. It is usual for someone to have this severe problem with the right arm and the left be normal. Again, many of these can happen in CIDP, but they are atypical.

The tests you need to assess for CIDP are spinal tap to look at protein and cells AND an EMG. You should also be tested for MS with the spinal tap.

It seems to me that at the young age of 20, another thing really to consider is an arteritis or vasculitis. Temporal arteritis can give severe frontal headaches and affect vision. You should have lab tests such as an ESR and ANA. Spasms in vessels can cause transient pain and neurologic symptoms.

Please also make sure that you take the MRI scans themselves to the new neurologist so that he/she can relook at them especially for signs of thickening of nerves and at the brainstem. Sometimes subtle things can be missed.

Best of luck and I hope you all figure out what this is and you feel better.
WithHope for cure of these diseases.

Glad you got some helpful information here. I am sure you are frustrated. If it were me, I would ask for my records from the neuro, all MRI’s, any lab work, and see about going to another neuro for another opinion. Ask them about the arteritis/vasculitis. There is also a number of other syndromes, Lyme Disease, Sjogren’s, heavy metal poisoning, toxic neuropathy, etc. It does sound like some type of neurological issue with the burning, numbness, etc. Is there a university or some large institution you can go to?

I guess the good thing is you know from the MRI’s it is not a tumor or some other catastrophic issue. That doesn’t solve your problem, but once I ruled out cancer and brain tumor, I chilled out quite a bit and then tried to figure out what was wrong. Take care, Gabrielle

Britt, have been following your post but have not had any advice to give as this really seems over my head, but I am glad you are seeing a new neuro next week. Let’s keep our fingers crossed for you.

Good Luck:)

Sometimes you have to put things in perspective and I’m sure you will figure things out. Just keep doing your own research, but don’t get too deep or you will have yourself dead and buried by Monday:) Just look into neuropathy, read some of these posts, and write down your questions. Good luck at your appt and let us know what happens! Gabrielle

Britt,
I was diagnosed with peripherial neurapathy about four years ago, but I had a muscle and nerve biopsy done on my leg a couple of months ago and was finally diagnosed with CIDP. Have any of your doctors metioned doing a biopsy? That would help to diagnose anything going on with your legs…not just limited to CIDP. Good Luck!! -Amy-

Hi Britt. I have had CIDP for 8 years. I agree with Gabrielle about the other lab work for Lyme’s disease, etc. My spinal tap showed normal protein so the lab work ruled all the bad stuff out. I was finally diagnosed after the 2nd EMG and a second opinion with a neuro doctor. Too bad about UCLA but the best you can do is keep journaling all your symptoms and take that, your labs and MRI and other x-rays to your next neuro visit, that will really help him start with you and go from there. Good luck to you. It is frustrating to be patient while the doctor has to rule out all the other bad stuff, but that’s how it’s done. Hang in there and write down all your questions and be sure and get them all answered. Emma

Hi Britt,
Sorry about all of the confusion you are going through. Regarding your initial l/p, w/cidp, there does not have to be an elevated protein level, although Kevin did have one. Have you had a ncv/emg? When Kevinwas at the peak of his attack, he did always complain about it being difficult to breathe and catch his breath. They did a pulm. study, all was fine. The lungs do get affected, as do other functions, Kevin started having bladder issues
(never felt like he completeley emptied as well as constipation) He was in picu for 10 days because the breathing continued to be an issue. Once ivig was administered things improved instantly.

Was the breathing cidp, or anxiety over what was happening? hard to say. I think it may have been both. You may not think you have anxiety issues, but they just creep out. It is so stressful not getting a dx, not knowing what is next etc. Just be watchful as you are and go to the er as you did when in doubt. Was transverse myelitis ever brought up? just a stab in the dark. Good luck!
Dawn Kevies mom

Hi Britt,
Forgive me for not remembering the whole history. When did your symptoms start? How long have you had them? The palate/tongue issue IS SOMETHING to be ALARMED by. It is traveling. As I mentioned I DO beleive some of Kevin’s breathing issue was an autonomic response as well as some anxiety. Just because you are not stressed that particular day, you still can be stressed later. The traveling upwards to the mouth now does seem to indicate an active attack and possible respiratory involvement. Personally, I might go to a different er. Where in SOuth. Ca? Can you go to Cedar Sinai? Also, there is a clinic in Arizona, Pheonix run by a doc who is on the foundations board, Maybe a doctor Saperstein. Call the office in the am and ask for the pheonix linic and if they can get you in (of course if it is doable for you) At the very least, the foundation could direct you to someone in your area. Most certainly, where ever you go, I would insisit that the new doc does a ncv/emg if he himself does not suggest it. Also, what did they do test wise to r/o ms? Did they do mri? If so and no lesions, it is probably not transverse myelitis. But worth asking the professionals. Try to convince someone to give you ivig, that is the only thing (first line of defense, other treatments also available, steroids, pp) that will stop the continuing demylienation.
Keep us posted and please watch that breathing and tongue issue, try to eat in front of someone.
Dawn Kevies mom

BRITT!!!! Thank GOD you are changing docs, with that list and no answers I would check to make sure the last neuro you went to wasn’t actually a manicurist!!!! Regarding the eating, yes, risk of choking, stick to small soft stuff. Now that I think back, Kevin actually would bite his tongue alot, I wonder if he also had numbness in the tongue, but being only 10 was too young to articulate the symptom. Make sure it is a ncv/emg together and ask for a copy of the report to keep with you. If you ever get another (and you will) it is good to have a comparison so all of the same nerves can be tested preferably by the same doc. About the mri, I think for ms/transverse myelitis, they also would do an mri of the spine. If they admit you and you are there anyway, ask for it. Make sure you ask for copies of all of your records you will need them for yourself and if you have to continue switching docs. Just a little trick, if you like your g/p, or which ever doc you like, ask if you can have the copies sent to their office. You will have to sign a release of record sheet and on it if you check the area that allows your doc to receive the records, you do not get charged. If they are sent to you, they charge by the page. The first time, it cost me $125. Next time you go to the hosp for tests, try to remember to ask for that sheet of release so it is on file and you do not have to make a special trip just for that paper. Keep detailed notes to bring to each appoint. I have a binder (we are up to the 5″ one now) with tabs in it, a diary section with changes noted, a treatment section with all ivig lot numbers, a question section, a informative section with abstract info I find, of course an insurance section and finally a copy of all docs phone #’s and addresses. Just now, 21 months later I started leaving my monster binder at home because things are pretty routine now. But before, it went everywhere, I could flip to the question section and be ready to ask. When we had repeat ncv/emg, and they did not have a copy, I supplied it to insure the test was being duplicated. Unfortunateley, you have to take charge of your own condition because you know what you are feeling and in some cases until you find the right doc as we now have, you know more than the doc!!
Good luck, if you would like to talk, pm me and I can give you my number.
Dawn Kevies mom

I re-read your post, I noticed you had eye involvement. Ask the doc to see what he thinks about the Miller Fisher varient of cidp. I do not know enouch about it to comment. For instance, I am not sure if un-even dialation of the pupils would be a symptom or if you also must have the droopy eyelid. Neurotnin I believe, would only aid in pain control, not making the symptoms go away, so it was interesting that the eyes became equally dialated w/the neurotnin, maybe it was just coincidental and that part of your attack was over. It seems like your symptoms have been around for about three months, and continue to travel, so I guess it would be safe to say you are in an active attack. Is it possible for you to articulate in an emergency fashion to the doc today that this is going upwards to your lungs,toungue, and palate?? It seems as though ivig asap would be prudent. Maybe just go to a different er. Try to remember the holiday is soon approaching, and Monday is a long ways away!!!!!
Dawn

I haven’t had time to read all of the posts, but what I’m seeing or hearing from you is that you are possibly is you headed for gbs/cidp quickly… YOU had better go see doctor… I had that numb tongue thing, and that was about the last symptom before things got ugly.. Good Luck let us know..deanop

MF CAN be associated with cidp. Emily, Kelly’s daughter has cidp with Miller Fisher varient.The year and a half ago would for sure point me to cidp. You may have dismissed the symptoms initially, and believe it or not, with all the time that has passed to now, and the amount of disability you have, or don’t have, might actually put you in the mild category. Compared to those on walkers and wheel chairs. Please don’t blow your opportunity tommorrow. Convince that doc to start you on ivig and admit you tommorrow. You have to be stern about the breathing and traveling. You don’t want to end up on a respirator. Most importantly, the longer you wait, the more damage. In the beginning, it is on top of the myelin sheath that the inflamation is. As time goes by, it goes through the myelin sheath and attacks the axons. Once the attack reaches the axons, they don’t repair. The damage is permanent, even with ivig. You do not want to get to that point. Good luck!
Dawn

In preparation for tomorrow, think or write down for each of your list of symptoms details maybe in a table with start (about when it started), duration (how long it persisted), frequency (if it returns), severity (how bad is it), change (has it changed over time), and modifiers (does anything make it better or worse).
Since you do not know the new doctor and how well he/she handles lots of details, ALSO make a list of the three things that most worry you, the things that are the worse, and the things that most affect life. You could also star or mark these on the table, but this allows you to say it all and give perspective about what is most important to you so that does not get lost in the details.
Since you are dealing with a lot including really important things like swallowing and breathing !!!!, also think about pushing to be admitted in the neurologist is not sure of an exact cause and also maybe getting seen while in the hospital by a rheumatologist.
I have another thought, is there any chance that you have been exposed to chemicals or “poisons” against weeds/animals/insects?
I hope all goes well for you and that you get answers.
WithHope

Britt,
I wrote you a long post yesterday but for some reason it didn’t show up. Most likely I’d exceeded my daily forum output. 😉 The symptoms you list are very similar to mine. I also had/have cranial nerve involvement, the unequal pupils, numb tongue etc. I don’t have much to add to what everyone else has said except that you should be careful. I went from “not such a bad case” to barely being able to breathe shortly after my face started drooping and my tongue went numb. Things had progressed very slowly, taking 10 months to travel from my feet to my arms and face – then once it hit my face it only took days before I was having difficulty breathing.

I’m glad you are heading back to the doc and getting more aggressive. Let us know how it goes. 🙂

Julie

Good morning Britt,
Glad you are going today. With Hope brought up a great point, I totally forgot about that. The reason she brought it up (I think, I don’t want to speak for her, but in case she does not read your question before you go to the doc) is some neurological symptoms are caused by chemicals or heavy metal exposure, I think if the exposure is removed, the symptoms go. It is a blood test. Also Lyme’s disease is another test to ask for as it causes neurological issues (from ticks, deer ticks in particular, I think) It too is a blood test. Remember, if they admit you, and push for it because of the breathing and tongue/palate issues, ask for every test. Maybe you could ask for the mri of the spine to r/o transvers myelitis, and of course, the l/p. I am not sure what checking the pressure means as you expressed in your post, but they need fluid to check the protein level. Not sure again, but ask, I think there is something specific in the fluid that they check for to r/o ms too. If they do admit and do ivig, ask (if you can, due to shortages) for gammaguard LIQUID, it seems to be easier in the reaction department. Ask for a fluid iv in case you have not had much to drink prior (they probably will do it anyway as protocol, but you never know, same thing for pre-meds, tylenol, benadryl, followed 4 hours later w/motrin or as Kevie uses, aleve) This too is protocol, but you never know, does not hurt to check, you will get the headache (maybe not, and you will be one of the lucky one’s) not them. Be sure to DEMAND a SLOW FLO RATE. Kevin’s is really slow, you may be able to go faster, some adults on here go anywhere from 50-120, for a first time and being in the hospital anyway, why not go slow, maybe 50-100, somewhere in that range. Drink fluids throughout the infusion and pre-medicate around the clock, even when not being infused and evne a day or two after.. You have to ask the doc for this as he has to put it in the orders, otherwise, it does not happen. It usually takes 4-5 days, so bring stuff to do. Most hospitals have computers you can use, but they are shared, being the psycho germa-phobic that I am, I brought my own AND a can of Lysol, keep in mind, I AM PSYCHO about germs, so don’t put too much stock in that! Good luck, Hope I am not jumping the gun. In any event, you will have this info for when you do get ivig!!!
Dawn Kevies mom

Britt,
Time to get a new doctor. Trust yourself and your family, not someone who sees you for 15 minutes every few months. Get all your records if you can, let him do these tests and get the results, then cart yourself off to someone with a more open mind and less of an ego.
Julie

[QUOTE=britt]
Except that the neurologist that I visited literally thought I was insane. He’s convinced that whatever I’m feeling may be not an “organic” issue. Meaning yeah, he thinks I’m crazy. As my boyfriend put it, he seems to be doing these tests out of pity. But I guess the reason he thinks that is because my responses to his little tests all over my body were normal.[/QUOTE]

The first 4 Dr’s and first 2 Neuros told me that everything that I was going thru was “in my head”. All they’d do was give me antidepressants. The 5th Dr said I had fibromyalgia. He’d at least listen to me, and I don’t blame him for thinking it was fibro as most if not all my symptoms mimic’d that. I figured out I was hypothyroid (subclinical) and finally convinced him to send me to an endo. The endo didn’t think I was hypo due to my levels, but he felt sorry enough for me to treat me (and he let me pick the type of med I wanted instead of making me take the normal synthetic hypo meds). Ha, I was right and 13 years of pain disappeared plus all of my other hypo symptoms. After getting sick this March again, my regular Dr announced that there was something wrong with me as I could not walk. I now have a new neuro who is convinced I have CIDP and is treating me.
Moral: Trust your body as you are the one to know when it is working right and when it is not working. And, an MD after a persons name does not make them a “Dr.”, search till you find one that listens and works with you.
Kristin

Britt, Sorry to hear about your session with the Neuro.. Remember, Doctors are only practicing medicine.. That does not make them right all the time, and they are not GOD! You may or may not be suffering a neuro disease, but don’t feel bad… I know it is frustrating.. It took 5 doctors, 2 emergency visits, several wrong diagnosis over the course of two weeks to get a correct diagnosis.. One of our doctors up here “practicing medicine” totally screwed up the dx.. I figure they could have saved me many months of rehab., had this been caught sooner.. Hang in there. The good news is, that many things can mimic a serious neuro. thing, and maybe there is something simple going on with you that can be fixed… I wish you luck…deanop P>S> early on, I told the neuros about the numb tongue, and they had no clue, etc…:rolleyes:

Britt,
Take a deep breath, you WILL get this figured out. Kevin’s first diagnosis was conversion disorder (psycho) he said it is not uncommon right before school and after summer sports for boys who are pushed to much to exhibit this reaction because of overload. I explained this was Kevin’s first year ever even playing a sport for 6 weeks, and he could not even play outside with his friends. He could not lift a rag to wash himself, he fell in front of his classmates. He gave me a peds psychiatrist card and told me I should take the whole family for counseling. For about 1 minute I thought maybe it was my fault and then I called Kevin’s podiatrist who takes care of his in-grown toe nail issue. He is also an orthoped. dr that deals with muscular dystrophy. He examined Kevinand agreed weakness, ordered blood test for md, lymes, heavy metals, etc. as well as emg,ncv. The ncv indicated conduction block and slowed velocity, not psycho stuff. That neuro who did the test said it was cmt, charcot marie tooth dis. So that was our 2nd dx. I started investigationg that as it fit the profile except for the duration of time that it would take to get to Kevin’s disability (years) went back to podiatrist, he saw Kevin was QUICKLY worsening and agreed. Sent us to current neuro. who did L/P to check protein because he suspected gbs. He started ivig the next day. The reason I tell you this is because about 3 weeks went by from first doc to dx. not including the pediatrician who said it was because he needed to loose 4 pounds and was tired from carrying too much weight! Try to be patien, more so vigilant. It is not like a cold and you will wake up one morning feeling better. IT GETS WORSE!!! Forget about yesterday and move on to the next neuro. Go to a different town, go to LA, better yet, go to the clinic in Arizona that deals specifically with gbs/cidp. Don’t wait, the more damage that happens makes it even harder to get everything back. If they do not think it is cidp, then maybe transverse myelitis, maybe cmt, but they have to dx something with the symptoms you are experiencing. What tests did this guy do that were normal? Did he check reflexes, have you sit on the floor pretzel style and ask you to get up, have you put your arms up like you are flapping your wings and push down to check your resistance, did he check the resistance of your ankle when he held your foot and told you to pull? Did he have you hold your arm as if you were going to do a weight curl and pull at your hand while you resist, how about walk on your tippy toes or heels. Are you able to do those things FULLY? If not there IS a problem clinically not to mention the symptoms you describe. So far, you have no diagnostic evidence other than some blood work and mri of brain and an l/p measuring pressure, what ever that is and no protein levels. You really have no diagnostic tools. Is it a ncv/emg, BOTH! If so,that will be a good peice to the puzzle from a diagnostic perspective. Just so you know, not all people have an elevated protein in the l/p, so should you get one and it comes back ok, do not get discouraged.
Dawn

Britt,
I also posted elsewhere for you to re-calculate the mathematical formula for ivig, my mistake, it is 2.2lbs that equal 1 kg, not 2.53. Sorry! Be strong, we have all been in this diagnostic nightmare. You just need someone strong by your side to help you fight until you get an answer.
Dawn

Britt-YOU ARE NOT CURSED!!! Remember each one of us had different problems, pain,dx. and each reacts/needs different treatment. Dawn is right-time is really important with the ivig and necessary treatment to get you better. If you have good luck with your gp-tell him/her your frustrations and ASK immediately for a referral to Arizona and they really should make that referral for you. That is how I have to do it with my insurance co. You keep going to a new physician until you get the necessary diagnosis and treatment-going to a university is what helped me the best-they had the most experience and understanding of cidp. I used to get so mad at my first neuro dr because the last test he made me always do was cross my arms and get out of a chair using only the strength of my legs-how stupid–I had to lean forward to get my body centered(physics, people) and then could stand up and he said “NO, only use your legs; you can’t lean”–I finally made him sit in the chair and do it and guess what-he leaned too–that was the last time he made me do the test. LISTEN TO YOUR BODY and write down what it is telling you and get your gp to help you find someone who can help you–he likely gets a consultant note from all the specialists, so he has your complete chart(mine does)-let him keep finding you someone to help you until you do-your body needs help to get better. All my best, Emma

[COLOR=black]Hello Britt,[/COLOR]

[COLOR=black]UCLA, USC, and UCI have reasonably well regarded neuromuscular clinics. I don’t know about Loma Linda’s or UCSD’s. I know UCLA is out for you at this point, but USC and UCI (a bit of a hike, I realize) might accept your insurance. Generally, you will need a referral from a doctor, and get your insurance all lined up, but call the clinic first to find out just what you need.[/COLOR]

[COLOR=black]I will ask my neurologist if he knows of others in private/non-university practice that specialize in neuromuscular diseases in Southern California. If he feels like he can recommend outside Kaiser, I will let you know.[/COLOR]

[COLOR=black]Godspeed in your search for a firm diagnosis, treatment, and for a good neurologist.[/COLOR]
[COLOR=black]MarkEns[/COLOR]

[COLOR=black]Hello Britt,[/COLOR]

[COLOR=black]I am happy to help and I am glad that you were encouraged. However, I fear that I might have inadvertently given you a false hope. I am not asking my neurologist to give you a referral. I am merely asking him for recommendations. It would be considered unethical for him to refer you, because he has never examined you. You will need to get your doctor to make the referral to one from my neurologist’s list (should he have one).[/COLOR]

[COLOR=black]Being in Kaiser, I would never be referred to a doctor outside of Kaiser except in extraordinary circumstances. So I don’t understand when you said, “apparently my insurance prevents me from needing one in most situations.” I think I am stumbling over the word “prevents.” Do you mean that your insurance does not require referrals?[/COLOR]

[COLOR=black]At UCLA, the doctors you would want to see are Michael Graves (although good luck as he is extremely busy), Perrin Pleninger, Perry Shieh, and possibly Martina Wiedau-Pazos. At USC, the doctors would be W. King Engle and Said R. Beydoun, and possibly Valerie Askanas. At UCI, the doctors would be Tahseen Mozaffar, Annabel K. Wang, and Luis A. Chui.[/COLOR]

[COLOR=black]I give you this list so that you can be more specific with your referring doctor, making sure he refers you to a neuromuscular specialist. However, you will still probably not get to choose which doctor in the neuromuscular group you will see; it will be a more or less random pick. Take it and get established. Unless you have zero rapport with the doctor, stick with him/her for a while. It takes time to build the trust that is part of the doctor/patient relationship. If you still find that you don’t think much of the doctor, it will be easier to select a different doctor.[/COLOR]

[COLOR=black]An NCV (I am not sure and EMG would be necessary), a whole host of blood tests, and a repeat of the LP are needed to help determine if you have CIDP. It is good that you are getting these tests done soon. By the way, don’t get upset or take umbrage if the blood tests include tests for syphilis and HIV; the doctor is just doing his/her job.[/COLOR]

[COLOR=black]Again, Godspeed in your search for a diagnosis, treatment, and neurologist.[/COLOR]

[COLOR=black]MarkEns[/COLOR]

Britt-all my best wishes. The EMG, spinal tap, and all the blood work will give the doctors important answers and then keep your list handy of all the problems you are having and then they can put it together for you. Be positive, be patient, but also be persistant to get the help that you need.
So many here have give you wonderful idea of questions and what you need, so you really have a better understanding of yourself and know what to ask for to get results.. Emma