Will symptoms get worse if not treated

Gabby,

If you have CIDP, GBS or one of the variants, the symptoms will continue to get worse because your immune system will continue to attack your nerves. Treatment is always started asap to minimize any damage to your nerve or the myelin coating. Be persistant and push for a definitive diagnosis so treatment is started asap if in fact it is needed.

Jerimy

hi gabby & welcome,

ditto jerimy. demand an emg/ncv. if the ncv shows damage, they should Dx you as gbs & start ivig yesterday. you will get worse until your immune system stops producing the bad gbs antibodies. take care. be well.

gene gbs 8-99
in numbers there is strength

ABSOLUTLY, your symptoms will continue to get worse as your body continues to attack and kill nerves. Soon you will not be able to walk and maybe not breathe.
Find a nuerologist that knows about GBS; immediately.
I don’t want to be a worry monger but things can happen quickly….
AND if you have GBS; the sooner the progression through your body is stopped the better and more complete will be your recovery.
AL

Just want to add my voice to the chorus. GBS will continue to get worse until it has run it’s course in your body, unless you get treatment. It allowed to run rampant, you can end up with a worse case, longer recovery, and possibly more residual problems, some of them permanent.

Don’t take no for an answer when it comes to pushing for a diagnosis. Time is your enemy with this disease.

Best wishes, Suzanne

First, I just want to say what a blessing to have found this site. My symptoms sound just like the majority of you cyber-angels. I am a 37 year old mom of 2 small children.

My background:
1. My bloodwork is normal
2. My reflexes and other physical exam stuff is normal
3. I had the flu about a week before the first symptom

My symptoms:
1. tingling – legs, arms, face, back
2. fatigue
3. joint pain started yesterday
4. I walk normal. I talk normal

My question:

I will have the MRI in 3 days to rule out MS. But my neurologist said I had to wait another 1.5 weeks to have an EMG. Does that seem right?

Absolutely not! Has your Dr. suggested any reason for waiting. Do not wait, if the progression reaches the chest prior to treatment you could lose the ability to breath on your own. It has been quite long enough. Have the emg/ncv yesterday and get the IVig ASAP!!!!! Get to a different doc now! gene may be able to suggest someone in your area.
And remember what Shannon said, “Time is your enemy with this disease.”
Best wishes and welcome.

GBS symptom progression takes 4 weeks to reach its ‘worst’ point, SIDP sypmptom progression is more than 4 but less than 8 weeks. If you have GBS then whatever tests are done in 1.5 weeks are too late, that means that IVig and PP will be pointless and with no benefit as they are done to try and stop further damage to the nerves. Going back to SIDP, this even seems less ‘known’ than GBS and is also treated with IVig and PP, so Im not even sure its a diagnosis that will easily be made by a doctor.

Hi aj,

Since your a Sparty does that mean an MSU grad??

Ask your Dr. about an NCV test and/or checking for proteins in your CSF. Since he wants to wait for an EMG and MRI it would seem like he doesn’t think GBS/CIDP is a possibility. Otherwise he wouldn’t wait so long. I would push for an answer sooner if possible, if it GBS etal then the sooner treatment is started the better. Take care and please come back and ask any questions you might have.

Jerimy

[quote=spartyaj]First, I just want to say what a blessing to have found this site. My symptoms sound just like the majority of you cyber-angels. I am a 37 year old mom of 2 small children.

My background:
1. My bloodwork is normal
2. My reflexes and other physical exam stuff is normal
3. I had the flu about a week before the first symptom

My symptoms:
1. tingling – legs, arms, face, back
2. fatigue
3. joint pain started yesterday
4. I walk normal. I talk normal

My question:

I will have the MRI in 3 days to rule out MS. But my neurologist said I had to wait another 1.5 weeks to have an EMG. Does that seem right?[/quote]

Yes. I am a MSU Alum.

Thank you all for your advice. Please keep it coming!

My neurologist at my first consult said, “it could be GB or some neuropathy but it is too early to tell”. We talked through my medication – no factors, diet, alcohol consumption etc.

Getting progressively weaker and the joint thing starting yesterday, I called my neurologist back this morning. I told him it was all I could to work and then crawl into bed. He asked if I was having trouble breathing – I said deep breaths only and walking – only tired…. He offered ibuprofen for the pain and a drug for the symptoms (I declined). He stated that I should keep both appointments MRI monday and EMG a week from Tuesday. When I asked if we could do the EMG earlier, he again said “it is too soon”. Which is where I was this morning.

I just put a call into my pastor at church to see who is a neurologist in our congregation.
Thank you for listening.
AJ

aj,

It bothers me that he is aware that it can affect your breathing, knows you have to crawl into bed and still seems to want you to wait it out. Find a new Neuro for sure, if your breathing is really affected go to the ER as soon as you think you need to. Your onset seems like what might be CIDP rather then GBS, I hope a new Neuro might be available in your church.

Not sure where you live but if your still here in Michigan and wouldn’t mind coming to Ann Arbor, I could get you into my Neuro. asap I would just need to call him since he is booked solid.

Please take care, if you need anything email me [B]jerimyschilz at hotmail dot com

[/B]Jerimy

hi aj & welcome,

as said before me, do not wait for the emg/ncv. your doc is wrong in saying it is too early. not to make you worry, but fyi, if you stop breathing in your sleep… you prolly need ivig yesterday. it is not a cure, but has abt a 70% chance of stopping further damage. see my post 2 before your 1st post. take care. be well.

gene gbs 8-99
in numbers there is strength