August 8, 2014 at 6:37 pm
I am just having trouble getting any kind of diagnosis for my symptoms because of normal test results – has anyone had any trouble like this, or have any ideas??
I have weakness in both legs, hips, hands and arms, tingling and burning/aching when I use them much… I cannot climb stairs very well and walking is very difficult so I do use a cane…
My symptoms are bilateral, and also get worse when I get colds or flus for some reason. I have been hospitalized 3 times because the weakness progressed over a period of 7 weeks and I was unable to sit up or stand on my own, weakness progressed to my trunk and neck, and basically was immobilized… would be in the hospital for 1 week, and then symptoms reverse and begin to improve again slowly.
Sometimes it goes away completely for a while, but a flu will retrigger the whole thing again.
I don’t have any joint pain or swelling or any other symptoms except progressive bilateral weakness, tingling and aching described above….
They initially thought GBS, and then CIDP because of the recurrent aspect, but ALL tests, including reflexes, are normal throughout the whole process…
So, I get no treatment because of no diagnosis… the doctors I’ve seen said CIDP would definitely show up on the tests, somewhere, but I’ve read here that there are some cases that all tests are normal and a treatment of IVIG was finally done to see if it helped…
I am 35 and this relapsing remitting course has gone on for 7 years now… just don’t know what to do to say the least!! Any ideas would be greatly appreciated… Have had MRI’s, CT scans, EMG/NCV, Spinal tap, blood tests, etc… you name it, I’ve had it…
Anyone at all like this???
Any ideas for another step, or how to find a doctor that might help prescribe IVIG or something to see if it helps and thus help in diagnosing?? They say they cannot because insurance won’t cover unless there is a dx first, which is completely understandable, but leaves me in the brink! My poor doctor is at her wits end too, as we have run out of options…
thank you for any help that you may have…
August 9, 2014 at 12:53 am
Diagnosis of neuropathy is often difficult, but usually not so difficult as in your case. The spinal fluid test will usually identify it as either GBS or CIDP, but not always. The test can be negative if taken too early, then positive later, so is sometimes repeated. Was your test taken early? Was it completely normal or just too close to normal to be a definite positive?
When a diagnosis is inconclusive, sometimes a nerve biopsy will be done. This is an invasive procedure, so is usually not done if not strictly necessary. Have you had this?
Perhaps you should go to a Center of Excellence for diagnosis, if you are able. Where are you located?
August 9, 2014 at 11:43 am
Thank you for your reply…
No, I have not had a nerve biopsy done… I had just one spinal tap, but am not sure what the actual result was, just that it didn’t show up as conclusive to anything – I actually cannot have another as that one didn’t go well at all, and had some real bad complications unfortunately :(….
I am near Seattle here — been through the major hospitals here, but haven’t gone to a Center for Excellence — with all tests being normal, am not sure what more they could do??? It would have to be diagnosis based on symptoms alone….
August 9, 2014 at 5:20 pm
There is no C of E in the Northwest, but Swedish Hospital in Seattle has an excellent reputation. Have you been there?
I would not assume that everything has been done. Until you get a good diagnosis, you should keep looking for a neurologist who might have more insight into your disorder. Leave it to them to decide what they can do.
August 9, 2014 at 8:23 pm
Yes, been through 2 Swedish hospitals here, they are good, but still couldn’t make a diagnosis — I guess we just have to keep searching for a neuro, one that is perhaps willing to try treatment first… argh…
thanks for all your help…
August 9, 2014 at 9:03 pm
Why not discuss the nerve biopsy with your doctor?
August 12, 2014 at 12:28 am
Hi, welcome, and so sorry you are going through all of this..
I have been going through this for 3.5 years, and my tests are not conclusive really either.. I had bilateral onset weakness, with numbness as well, progressed from feet to head over the course of three months.. clinically sounded like CIDP.. but the only findings on NCV/EMG were slight demylenation around my knee on 1 of the 4 emg’s in 4 months! Dr’s brought up ALS and many other possibilities that freaked me out! Anyhow I crashed, couldn’t breathe and ended up in the hospital when they tried IVIG, since cilnically I sounded like CIDP.. it saved me.. turned me around – I could grab onto crayons with my kids again, i could smile again (my face didn’t work before), I could breathe and swallow and walk without a waddle again..
I did have an epidermal nerve biopsy (for small fiber neuropathy).. this came back extremely abnormal.. showed a severe non length dependent neuropathy.. they thought this kind of sealed my diagnoses.. of “inflammatory neuropathy” (my ANA was pretty elevated).. The epidermal nerve biopsies I guess they don’t do many places, but I would ask your doctor about them..
How much numbness/tingling do you have? Do you have muscle wasting? With your crashing with colds (similar happens to myself.. i get noticeably weaker the day before I even realize i’m getting sick – with any immune stimulation it seems to flare).. Have you thought about myasthenia? Lambert Eaton? have they tried you on oral steriods? Have they tried you on ANY meds? Mestinon or anything?
August 12, 2014 at 1:19 am
bny806, you and I share many similarities. Last year my GP pushed me to have 3 vacinnations on the day (all were unnecessary) and triggered an autoimmune reaction in my neurological system. Weakness in legs, numbness everywhere, pain, shaky hands, lack of balance, weak jaw and face. I do not have much demyelination but have much axonal damage. I also have mild SFN but all symptoms are autonomic. I was checked for autoimmune Lambert Eaton because it, like CIDP, is often caused by vaccination or infection. A fact even less talked about than the more infamous CIDP – vacinnations link. I was of course thoroughly checked for cancer too and I am clean. My doctors are all very positive it was an autoimmune reaction to the vacinnations.
Have you tried DAP along with mestinon. It might help too. I am only on ivig. Every week. I respond well but I am far from normal. It is hard to live like a 24 year old being hooked up 2 days a week. If I stop I go down more. And because all my damages are axonal I can afford to stop the weekly infusion.
August 12, 2014 at 1:21 am
Alisa, have your doctors considered Lyme? Or even MS? I would think so but just want to make sure.
You must be logged in to reply to this topic.