Doctors acknowledging GBS diagnosis

Im so terribly sorry that you are going through this. I understand your dread (because it is dread) at a doctor glossing over what you tell them. Many of us have unfortunately been through the same thing with doc’s not listening, or discounting what we say, or in fact not believing us.

Do you still live in the country, and if so, how easy would it be to get to a university hospital? Do you have medical insurance at the moment. Also, if you dont want to say over the forum, please pm me where you live and I may be able to get you in touch with someone who may know doc/neuro’s near to you that you may be able to see. I think the highest priority at the moment is to see a doctor who is willing to sit down with you and listen to what you have to say, specially about your past, then to do what tests are necessary to see what can be done to help you out. The fact is that you cannot go on like this, stress is also probably not helping out at all and will only cause more problems and cause GBS (including other illnesses) residuals to flare up.

Im sorry, I didnt even take the time to welcome you 😮 . Welcome to the forums – I hope we can help you in some way!

hi cyn & welcome,

you need an emg/ncv done by a neuro or better yet a neuromuscular doc to determine the status of your nerves & muscles. where do you live? i may be able to suggest one. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi and welcome,

Your symptoms can be many things. I do not have GBS or CIDP, but this forum has been my family of help during the time when I was undiagnosed. I just love them all 🙂 My symptoms turned out to be hypothyroidism/Hasmimoto’s (the autoimmune variant) with B12 vitamin anaemia.

When I first went to hospital, I was examined for GBS, MS, Borrelia, celiac and a lot of other things. I had CT, MRI, blood tests, emg test, etc. The doctors did not find out anything and sent me home not being able to walk on numb, aching, sleepy, tingly legs with weaker and weaker muscles. This was all over my body. Aching muscles everywhere – pain moving around. Not being able to distinguish hot from cold in certain spots on the skin. Dropping things from my hands, not being able to carry (had to use backpack). Tongue feeling larger, hair falling out creating small nests when bathing, extreme fatigue, memory and concentration problems, depression etc.

Thyroid problems are common when being pregnant and right after birth, if you have family with thyroid or autoimmune diseases, if you are in your fourties or older, etc. – look this thyroid thing up on the internet.

You should be checked for the following too by blood tests:
diabetes, Thyroid: TSH, T4, T4 free, T3, T3 free, TPO antibodies, TRAS antibodies, deficiency in B12 vitamin also called cobalamin, iron deficiency, ferritin, transferritin, D vitamin, Calcium, Potassium and what others in this forum recommend.

Thyroid problems are often accompagnied by other co-morbid conditions, and thyroid problems can be a bit difficult to get diagnosed as well.

I hope that you find out what is wrong with you.

All my good wishes to you !

hi cyn,

if the pain is neurological, as gbs pain is, you need neurontin. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. for the fatigue you must rest a great deal lying down. it may only help the fatigue a little, but it is a must for nerve healing. the nerves to pick for the emg/ncv are up to the doc. that is one of the probs of this otherwise good test. pick the wrong nerves & the test is worse than useless. it becomes an incorrect benchmark that no one is aware of. do not believe it takes weeks to analyze the test. the doc knows immediately, as he is doing the test, the results. if he says nothing looks bad, make him try other spots on your body. blood tests can only rule out non-gbs disorders except if you acquired gbs from food poisoning.

MICH U of M Neuro-Muscular clinic in Ann Arbor Michigan She, Dr. Feldman ordered an EMG & recommended immediate IVIG. We were told “you have come to the Center for GBS. We have been studying this disease for over 20 years and consistently explore the latest advancments in it’s treatment and recovery”. dr. parry is at u of m, world reknown. Mayo in 2002 (I have a severe case of CIDP), but actually had better luck at the U of MN than the mayo w Dr. Gareth Parry, & his is a specialist in GBS & CIDP. His nurse’s name is Denise, & her phone number is 612-626-9919. His phone number is 612-672-6300. You have to ask for his office & then you can leave a message on his answering machine.

Our Primary care Doctor is Dr. Clark Headrick and the Rehab Doctor is Dr. Dara Headrick, husband & wife both gbs experts.

Bon Secours Hospital located in Grosse Pointe (313) 343-1000, I went to their ER Nov. 21, 2002 w/numb hands & feet, after countless tests they called in a Neurologist: Dr. Policherla (313) 882-8600 he had experiance w/GBS before me & ran a lumbar puncture & nerve conduction test & determined it was in fact GBS

*NOT RECOMMENDED* So you see i am not alone in my opinion of him………………….I was beside myself. His name is Dr. Richard A. Lewis, M.D. Professor and Associate Chairman Department of Neurology, Wayne State University School of Medicine.

Dr. Richard A. Lewis @ the Detroit Medical Center. His office is 4201 St Antone, 8D UHC, Detroit, MI 48201 – Office #313-745-4275
He is the Associate Chairman of the Department of Neurology & on the gbsfi Medical Advisory Board.

The neurologist who treated me [quik confirm dx & quik ivig] was Dr. Darryl J. Varda, 2855 Michigan, NE, Grand Rapids MI 49506. Phone (616) 957-4090. Family Practice Doctor [quik dx] is Dr. John Hamersma, Allendale MI 49401. Phone (616)895-2000

Dr. Robert P. Lisak, Bloomfield Hills, has been chair of the department of neurology and professor of immunology and microbiology in the Wayne State University School of Medicine. He also serves as neurologist-in-chief at the Detroit Medical Center and chief of neurology at Harper Hospital. His primary research has been in neuroimmunology, diseases of the nervous systems caused by abnormalities of the immune system such as multiple sclerosis, myasthenia gravis and Guillain-Barre syndrome. Harper Hospital (Detroit Medical Center) Detroit, MI 313-577-1249

U of M in Ann Arbor Neuro. whom I think is wonderful. His name is Dr.Teener.

take care. be well.
gene gbs 8-99
in numbers there is strength

Hi cyn, Have you ever been tested for MS? You might bring that up to your Dr. Have you ever had a lumbar puncture? It tests for protein levels, and any odd cells. U of Mich is a good place to go. I went there in Oct and was treated with alot more respect and knowledgable drs than I have been in the last 2 years. Its better to have your dr fax/call in a consult request. They have many campuses around Mich, there should be one up near you.
You don’t need to apologize for the length of your posts, the more info the better:) . Yes alot of us have the symptoms you have described. No its not in your head, alot of us have heard that before also!;) Has your B levels been checked, along with your potassium levels?

cyn,

pain & numbness is normal w gbs. if neurontin doesn’t work for you, you can try these non narcotics; elavil, topamax, lamictal, trileptal, keppra, carbamazepine, cymbalta up to 90mg, lyrica [similar to neurontin]. Cymbalta® joins a group of other antidepressants such as amitriptyline (Elavil®, Endep®), which are known to be effective in treating neuropathy. take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=cyn926]First, I want to thank everyone for your suggestions and welcome. It is so nice to talk about this without people giving you that sympathy/confused look.

Second, you mean I’m not really crazy? You have all heard of this type of thing and maybe actually experienced it? Wow, I can’t tell you what a relief that is, I’ve been so isolated with it for so long, I’d about given up hope ever finding people who understood. Before they diagnosed my cervical herniations, I thought I was heading right back to where I had been. My hope was the surgery would fix everything, but all it did was fix my neck lol. The rest is obviously not related. I still think my spine took such a big hit from that paralysis I had, my discs running amock just seem like it’s part of the package.

They have checked my thyroid on and off, and it seems to be fine, though it is something to think about keeping an eye on. I’d never considered diabetes, though my sister had it, I probably should.

Other than the pain, I’m greatly concerned about my limbs falling asleep as they do. This isn’t just here and there, it’s anytime I try to lie on my side, either side…it’s also accompanied by the pain, be it in my legs or my arms and hands. You can imagine, then, how rare a good nights sleep is. Having to wake up and reawaken a dead limb takes awhile, by the time that happens, I can’t go back to sleep. Usually, I just toss and turn which stops the complete numbness, but sometimes it gets too far gone. I thought the leg thing was Restless Leg Syndrome, but with my muscles rippling like they do, and the pain that’s involved, I doubt that’s it.

And with the cold, my hands pain, well I would rather have the herniated discs than deal with that…it’s just brutal, a deep ache that won’t subside and you want to just scream, it’s that intense.

For awhile, I assumed it was Chronic Fatigue, but the paralysis with my mono just doesn’t cover that. Mono isn’t supposed to paralyze. If my ex husband says something is bad, you know it is…and this scared the heck out of him. Oh, one thing I didn’t mention was my vision was affected for quite some time, especially at night when I’d see doubles. My ex had to stop me from driving after dark for several years. For some (this is going to sound strange) reason when I was on a rather high dose of tranquilizers for the muscle spasms, my vision corrected itself. Doctor couldn’t figure it out either.

I now live in Western Michigan, about 50 miles north of Grand Rapids. Any referrals you can suggest would be awesome, though I don’t have the best insurance.

So, my question on the nerve tests is how do they even know what nerves to check? And what would the blood tests indicated? This time I am bringing a close friend to the doctors with me so he can confirm this is a real problem, maybe someone else that has seen it will get the doctor moving. I also have to get some pain management resolved, they yelled at me when I was eatin Tylenol like crazy, but don’t want to give you narcotics. I’ve never gotten “high” on them in my life, they just take away the pain to some extent. Some pain goes through no matter what, but it’s always relieved. We tried some prescription anti-inflammatories, but I had bleeding in my stomach from that; and steroids, but that made me so jittery I nearly hit the roof.

Sorry I’m so chatty, just hoping you guys can relate to some of the stuff I’m talking about and not think I’m just a baby or exaggerating. Do you deal with the “falling asleep” and RLS? One thing I do know, is there is some damage to my spinal cord from the herniation, and I have hyper reflexes, rather than the slower one people with post-GBS have. Tap my knee and it kicks straight out…even baffled the neurosurgeon.

Thank you all again, and any help you can give will be much appreciated. I will give the doc the list of tests…he’s usually pretty good if I tell him to test for something, he just gives up if nothing shows up. Again, thank you, and have a wonderful holiday weekend![/QUOTE]

Hi-
I was reading your post. You mentioned you are in constant pain and need pain managment. I have cidp. I do not suffer from nerve pain that people with cidp/gbs get. I do however suffer from constant back pain because of the curvature in my spine. I had my spine fused when I was 15,could not get as straight as everyone thought because my doctor had to “go in blind”-the electrodes did not work. Anyways so because I still have a curvature and suffer from pain my orthopedic surgeon at the university of michigan refered me to the pain managment clinic there. I take ultracet for my pain. It some what works,I think I need a stronger dose. My doctor does not want me to up it-however when I see him in 2 weeks I will find out. Just wanted to let you know about ultracet,it may be easier to convince a doctor to give you this and could help with your pain. Ultracet is an a-typical opiod it has 37.5mg of tramadol(the pain killer part)and 325mg advil. Anyways it may be easier to get because it is not currently scheuled and so therefore is not a narcotic,so doctors do not have to worry about the dea..lol You may need to bring this up to doctors and if they tell you it is a narcotic,tell them to look it up on the offical dea site. Some people for some reason in the medical profession seem to think it is a narcotic..Anyways sorry to go on and on. I hope you can get your pain under control:)