Problems

Hi everyone.

background before questions-

Around 10 years ago I had an injury where my nose was broken directly with a lot of force that went directly into my head. I was completely knocked out. I also was diagnosed with a brain stem injury from that event.

About 2 years later I was in a motor vehicle accident where the vehicle was written off. I suffered a WADS grade 2 (musculoskeletal whiplash) injury as well as collarbone damage. I was not assessed completely at the time and do not know if there are other effects. Years later my collarbone xray reflected it in a twisted state and bumpy looking.

I have had a lot of pain, short term memory, stiffness, and other issues ever since.

Then a few years ago I had my wisdom teeth out under anaesthesia after which I've had some ongoing jaw problems.

About a year ago I began to have double vision and the opthamologist said I had a problem with a cranial nerve/a palsy type thing.

One side of my face is a bit more swollen than the other side and it causes a lot of pressure near my eye but I can't pinpoint how far back that started. This is non cancerous but it is uncomfortable whatever it is. I have jaw pain and my jaw locks sometimes, sometimes it hurts to swallow...I cant open my mouth wide and sometimes my jaw clicks. My glands in my neck hurt and swell sometimes.

Treatment overview

For the first few years, Id say about 5.. I lived in misery basically! I sometimes went to the doctors but they just kept writing prescriptions when I really just wanted to be treated by someone who knew what could be wrong with me. I'm from a family that doesn't really use pills so I naturally avoided that kind of thing. It was a bit my fault I wasnt treated as well since I was shy to be upfront about how unwell I was feeling and I do have a dislike for hospitals! :) I'd throw all the prescriptions out that I was issued right after leaving the doctors offices...and the frustration continued...I tried private physio which fell through and the public physio ended up in me being unconscious from one of their treatments. After I mentioned to her that she could try other treatments on me, she still saw me as a liability and never took me back. It was discouraging since where I live there are not a ton of care options. Chiropractors will not screw around because of how bad my neck is on their scan readings. My neck area comes up with severe warnings on their scans. And also my allignment was off over an inch when they tested my spine a few years ago. The only prescription I did take was naproxen and ativan for a short period right after that accident (maybe a few weeks) and then later migraine medication since my migraines were very severe and I just had no choice as nothing else worked. And some advil.

Around the past few years, from lack of medication and pile up of my health problems causing me to literally fall over and have weird vision problems as well as really intolerable pain, I became so bad friends would take me in to emergency one night, then the next night, by the second night an angel showed up... and people had been praying for me so I think that had a big effect, but on midnight on a Friday night my specialist showed up and told me he could help me. Since then I have seen him but he is very busy, and he has helped bring some improvement and he understands my health a lot. He is kind of that guy that all the patients who are really bad and regular care is not helping them get sent to. After time went by he talked about me having Guilliane Barre as well as those other issues. There have been times in emerge or other places that doctors have noticed a lot of lymph nodes, and I do often feel there is more to whats going on with me than 'old injuries'. My arm sometimes goes numb, and I sometimes lose control of my muscles, walking without feeling my legs beneath me, those kinds of things have started this year mostly. My face is constantly in pain and my shoulder pulls often since its twisted. About 2 years back my lower back started hurting to, and my lower back has never hurt prior to that. I am at a point where I do take some pain medication, and this past week or two has been so bad I had to increase how much I took, but not on an unhealthy level. I saw my doctor right away yesterday and told her I had to increase it and that I need more help I dont like relying on medicine because Im getting worse and not being treated. I sometimes get a "drunken" feeling suddenly.. it might be lightheadedness but it sucks. My eyes move differently..

Im sure like a lot of you the list goes on, but I will end soon! I know a lot of you are in a much worse condition than me, I have read some of the other discussions and my heart goes out to you. But I guess... I am where I am and am hoping to prevent this from progressing

Im in Canada are there any clinic in US or Canada I can go in get a bunch of tests and get out knowing how I can be treated? Going to regular doctors is not going to help with whats going on. Any and all suggestions on what you know are appreciated as I am pretty much grasping for straws as far as information goes...

Im also working on a medical record/history so my doc gets more whats going on... any suggestions on what to include or not include would be greatly appreciated! new to this

one last question I am wondering if anyone experiences rapid weight loss

oh and also if there are any Canadians on here I would like you to friend me or add to discussion as I am wondering how you have approached your needs through what clinics etc, or if this can be covered under our public health care to receive treatment.. how did you approach this condition?

also can u get GBS without having had the flu shot.. thats where Im confused. I didnt get the flu shot, not unless it was when i was very young and Id have to check.

sorry for all the questions

Ok.. is me going for minor surgery to get my wisdom teeth out a risk factor? Or is it just hard to say why people get this. Right now I want to go for more testing that is my next step.

I too experienced rapid weight lose. I started with symptoms 11-9-13 and wasn't diagnosed until 12-19-13 that I had GBS and during that time I lost ruffly 25 pounds. With the rapid lose I also lost muscle mass especially in my arms. I have put that weight back on but have not gotten the muscle mass back in my arms. I am told by physical therapy that it will come back with time. That is the main key with GBS everything takes time. I am now 10 months out and am doing OK, but I also am doing therapy 3 times a week. If I do more than that I get very fatigued but that also should get better with time. The main thing with GBS is to take things slowly and to keep a positive attitude.



mdolich said:

Yes I did Confused. I went from 215 down to 185 (30 lbs) in about 5 days while comatose. It's rare, but it does happen.

As far as clinics in Canada goes, I'd try the "GBS/CIDP Foundation International", they keep a list of qualified neurologist/clinics in the US and I believe also Canada. I sent you the link to them in and message, so check your in-box.

Hope this helps, ""Stay Strong and keep a Positive Attitude""

Confused said:

one last question I am wondering if anyone experiences rapid weight loss

hi everyone. as a follow up,

i found out the specialist said "le barre" not guillain barre big difference! Anyways he said that without testing me... also I am still not at the bottom of the problem but getting closer. I dont think I have GB but I can't be positive about anything yet. I have some spinal issues I found out, neural foraminal stenosis and retrolisthesis (an almost dislocated disc basically in the wrong place) as well as some facial swelling, I get random arm pains now and my hand goes crooked sometimes.. thats new. The total loss of feeling in the legs while walking has happened again recently, I would say that is the worst symptom I have had. I think I will stay on the forum until I know for sure what the root cause of everything is as I am still getting tests in. hope you guys dont mind. I have jaw problems and pain, sometimes its hard to open my mouth. that could be because of the facial injury.

I dont know if GB can develop from previous trauma leading into any of the issues... any advice always appreciated, even if its a certain specialist you suggest

Hi, Sorry I spelled it wrong I was just going from the words he said verbally but I had them backwards, I was also super tired when I wrote that message, sorry for the confusion! I will cut and paste it it is

Barré-Liéou “syndrome”



mdolich said:

I never heard of "le barre" so I tried to do some research, but couldn't find anything on it being associated with any type of neurological disease/disorder.)

The only thing I found that was called "Le Barre" is a type of workout/exercise. So I don't know what your neuro/doctor is talking about. If you find out what it is, or a link explaining it, please share it with the group.

GBS can be also called "Le syndrome de Guillain-Barré", but it's still GBS (Guillian Barre Syndrome).

Good Luck, "Stay Strong and keep a Positive Attitude"

Confused said:

hi everyone. as a follow up,

i found out the specialist said "le barre" not guillain barre big difference! Anyways he said that without testing me... also I am still not at the bottom of the problem but getting closer. I dont think I have GB but I can't be positive about anything yet. I have some spinal issues I found out, neural foraminal stenosis and retrolisthesis (an almost dislocated disc basically in the wrong place) as well as some facial swelling, I get random arm pains now and my hand goes crooked sometimes.. thats new. The total loss of feeling in the legs while walking has happened again recently, I would say that is the worst symptom I have had. I think I will stay on the forum until I know for sure what the root cause of everything is as I am still getting tests in. hope you guys dont mind. I have jaw problems and pain, sometimes its hard to open my mouth. that could be because of the facial injury.

I dont know if GB can develop from previous trauma leading into any of the issues... any advice always appreciated, even if its a certain specialist you suggest