Tricky diagnosis

bd 9/3/53
Onset -Feb/March after long bout of bronchitis and flu with high fever.
dx with asthma, anemia, depression at time; previous dx hypothyroidism
sx: sudden onset of severe gait problem w/in days of starting Advair, but doesn't seem to be med related; a few days later, tremors in r leg, followed by tremors in r arm, both upon rest.
Additional sx:  weight gain, fatigue, swelling under r eye; fingers on r hand and little finger on l, and upper lip numb; some numbness on r and l arm/leg; memory problems; sometimes use wrong word in sentence.
tests:  MRI w/wo contrast of brain (2) & cerv spine (1);
ANA, sl elev, repeated, norm; assorted bl tests - neg; evoked pot neg (but staff didn't know how to do shock portion) - norm; lp neg except for 60 prot.
today sent in labs for heavy metals/ Wilson's

Local neuro stumped.  Sent to Wake For for consult. Stumped.  Please help

mamafigure

[CCF-Neuro-M.D.-JT]

Please keep in mind that I have not reviewed your tests nor have I personally examined you. But gait change with numbness, tingling and tremors in the setting of a post-viral illness could represent what's called CIDP or chronic inflammatory demyelinating polyneuropathy or a variant of this disorder , which can be diagnosed with spinal tap (usually very increased protein), EMG and neuro exam. It's due to an autoimmune response that follows an infection and attacks the myelin (nerve coverings) in the limbs.  Steroids and other immune modulating treatments are available. Talk to your doctor about getting an EMG or wait for one at Wake forest. Good luck.

[lil sunshine]

Hi,
What do you mean by heavy metals/Wilson's. I am being sent for patch testing to determine if I'm allergic to my limb salvage prosthesis which is 10 lbs of Cobalt, Chromium, Titanium and Molybendium{sp}. I have also been having some unexplained neurological problems. I have had numerous MRI's with 3 lesions being found. The neuro Dr is saying old age or migraines. I'm only 41 which I do not consider OLD!!! I had some symptoms when I was younger but after I had the tumor removed and the prosthsis installed I went haywire.
Bonnie

[mamafigure]

li'l sunshine,
I am being tested for Wilson's - which has to do with copper not being metabolized correctly.  The heavy metals that I'm being tested for are arsenic, lead, and mercury.

What did your doctor say about the lesions??  Seems like they are keying  on something.

mama

[lil sunshine]

Hi '
My doctor isn't saying anything about my lesions. I have left eye twitching/closing, facial numbness, hearing problems, speech  problems such as stuttering and using wrong words, urinary and bowel problems, tremors in legs which I think might be those faciculatins{sp} that some people talk about, numbness, tingling and burning in my feet. I had what I thought was a stroke where the whole left side of my body went numb and I fell. I went to bed {my husband wouldn't take me to the ER because he said they will only send you to your PCP which they did the next day.  I have also had what one doctor said were partial seizures.  I also have pain other than in my right leg, spasms that start as a burning and a shock- like vibrating.The AF neuro that I saw in TX{we live in Va} said that given my age and symptoms that it was possible that I have MS.We are military , so it's not like it costs anything. I am thinking of going to a civilian after I get the patch testing done as I read that heavy metal poisoning can cause neurological problems.

[mamafigure]

l'il
I live in VA, too.  Could be on the heavy metals, but I would definitely try a new neuro - now
mama

[mamafigure]

Thank-you for your response.  Now there is something new for my neuro and myself to investigate.  I don't imagine that you will have time to recomment, but a question comes to mind.  If this is a demyelinating disease, why doesn't it show up on an MRI, or is it just a peripheral problem?

Thanks again.  

mamafigure

[Abbey]

Mamafigure.....we share many of the same symptoms. I started experiencing them also after what I thought was a viral condition in February. Do you have any breathing problems or chest tightness? Please e-mail me @ ***@****

Thank you,
Abbey

[Supertramp31]

I have been having a difficult time to walk.I have neck and back probolmsand now in my right hip I have this pain and numbness and my legs near come out from under me any idea what it could be I think its cyitac nerve any advice on how to relieve the pain and get rid of it?I am going to have to go to the doctor and wait for a test I suppose eh?

[1kath]

HI
I ALSO HAS RESPITORY PROBLEMS ABOUT A YEAR AND A HALF AGO.  I NOW HAVE FATIGUE, SWELLING OF HANDS AND FEET, ARTHRITIS FEELING IN HANDS AND FEET, STIFFNESS IN THE MORNING, HEART PALPITATIONS, CHEST TIGHTNESS, STILL DIFFICULTY BREATHING, PAIN FROM HIP TO HIP THAT FEELS LIKE BACK LABOR, WEIGHT GAIN, NUMBNESS IN MY LEFT LEG AND BURNING IN MY LEGS WHEN AT REST. I HAVE LOST MY BALANCE A FEW TIMES ALSO.  THESE SYMPTOMS SOUND SIMILAR TO YOURS. IF YOU GET AN ANSWER PLEASE POST IT HERE.  
THANK YOU

[1kath]

SORRY I SENT MY COMMENT TO SOON, I ALSO HAVE SWELLING UNDER LEFT EYE AND SOME MEMORY PROBLEMS, I HAVE HAD A HARD TIME CONCENTRATING ON WHAT CAME EASY BEFORE.  I HAVE HAD BACK PAIN MOST OF MY LIFE BUT HAVE NEVER THOUGHT MUCH OF IT UNTIL ALL OF THE OTHER SYMPTOMS STARTED.  X RAY OF THE NECK AND LOWER SPINE LOOK FINE EVEN THOUGH I CAN FEEL PAIN DOWN MY SPINE AND EVEN INTO MY TAILBONE.  BLOODWORK IS ALSO FINE. KEEP ME POSTED
THANKS

[Abbey]

You described most of my symptoms to a tee. I also have stomach problems which have stawrted about the same time but I really feel everything you desecribed is back related, even the breathing problems. My concentration has been bad as well. I really wish someone could help us. I have had SO many tests...........

Abbey

[graham]

Having read the various comments and symptoms of the initial questioner and the various respondents, I would like to put foreward an idea which perhaps may be of help.

Having had many of the above symptoms, in fact most of them, and being given no proper explanation, I have delved through the net desperate for answers.

What I found out was that a particularly badly understood area, vitamin b12 deficiency, can cause serious problems from fatigue, poor memory, dementia, adverse hearing and eyesight problems and if unchecked serious neurological problems.

I know from having communicated with several people recovering from undiagnsed b12 deficiency that many doctors are not aware of this problem and some do not seem to accept that serious damage can be caused when the serum b12 level is still within what they believe to be "acceptable levels".

Now perhaps this is not the case with any of the persons posting here, but I would certainly want to know if my b12 had been checked and at what level it was recorded.  In the US many doctors think that if you have a b12 level above 200pg/ml (in the UK it is even less) then you cannot have a deficiency.  This flies in the face of countless reports that highlight the problem at considerably higher levels, at least into the 300's.

If your b12 level was checked and is anywhere in this area I would ask them to check serum homocysteine and methylmalonic acid, these can often detect deficiency before it appears in the serum b12 test.

I know at least one person mentioned stomach problems, this can oftem be where the problem lies and for various reasons b12 cannot be properly absorbed.  Tests for parietal cell and intrinsic factor antibodies may point to the problem being in this area.

I don't want to sound like some kind of expert, I most certainly am not, but when you are left with no answers you can decide to give up or do what many doctors seem to hate most, try to find out for yourself.

Good luck to all
Graham.

[mamafigure]

Graham,
Thank-you.  I am pretty sure that I had that run, but will check.
mamafigure

[mamafigure]

I will let you know if I ever get dx.  Do you have an email for me to contact you at?
mamafigure

[1kath]

***@****

[CherCO]

Just for ruling out purposes!   Do you have any fossil fuel burning appliances in your home?   Do you & possibly other family members often feel "flu like" symptoms?  Do you have a "digital" carbon monoxide detector in your home?

[mamafigure]

Thanks for your suggestion, but we live in a double-wide trailer with no basement and use electric heat.
I've been looking up the dx suggested by the physician, and I fit everything except the reflex test (mine are rather brisk).
mama

[Spring-02]

After three appointments with a neurologist, I have been referred to another one for a second opinion.  MRI, EMG and EEG tests were all normal yet there is no explanation for my symptoms.  These unexplained symptoms seem to be very real to myself and to those who have posted to this forum.  When you can't walk normally anymore, you start stuttering or misplacing words or can't get them out, suffer from chronic pain and can't sleep, you begin to lose hope and feel very helpless.  I had tremors and vibrations starting with my left leg.  I had foot drop and the sole of my foot feels like stabbing pain or pins and needles feelings.  Now my right arm is sore and numb and it is even more difficult to sleep, with the upper and lower extremities being affected.  I have hyper reflexes, swollen eyelids and allergies. I had Bell's Palsey, chicken pox, and came down with an unexplained rash before my foot drop. The doctor said it wasn't shingles, but it must have been some sort of virus.  Either my foot and leg is cold and numb or else hot with burning pain.  My brother also has had drop foot and his left leg had the same type of pain as mine.  He has to wear special boots to help his walking.  I was told that they suspected my problems were connected to a central nervous system disorder, but all the reports to date are normal. The blood work was fine as well and I am completely healthly as far as reports go.  I also over react to loud noise, bright lights or sudden movements. It is embarrassing, as I scream and my heart feels like it jumped out of my chest.  I feel so weak and overwhelmed after this happens.  I have been off work for nearly a year but can't get disability coverage as I don't have a medical dignosis for my problems.  My right hand was so weak, I couldn't open the car door.  I can't open jars any more and have difficulty with my fine motor skills.  I feel like so many others out there, that we are just falling through the cracks.  No diagnosis, no problems, yet our lives are turned upside down and the simple act of walking requires concentration to stay upright, keep your balance and keep from listing to the right.  Thanks for allowing me to vent but with so many people suffering from similar problems, there must be an explanation or relationship somewhere as to the cause.  I was told that it was great news that I didn't have a brain tumour or a life threatening disorder.  Yes, that is a consolation, but not having a label to attach to your problems can be very frustrating and scary. If you have a broken leg or an identified disorder, you at least get some sympathy and understanding. However, when there is no visible or detectable reason for your pain, you feel misunderstood and think that people feel you are faking it.  No wonder people feel so depressed, at least that is how I am feeling at the moment. Maybe my next neurologist will detect something the other guy didn't.  I was told I may have to wait two years or more to get a diagnosis.  It seems that many more are in the same boat.  All the best and God Bless.
Spring

[graham]

Hi Spring, I'm sorry you have been feeling unwell for so long now, I know how that feels and it certainly isn't fun.

I know you said all your bloodwork was ok, but if you read the post I put in above which mentions b12 deficiency you will see that there is an area which is often overlooked, or misunderstood, and can cause symptoms very much like your own.

I don't want to make out that this is the answer to your problems, it may be nothing to do with it, but I would definately at least ask your doctor if they tested your serum b12 level and get him to tell you what it was. As I said before, a lot of doctors do not understand this proble, fortunately there are others who do.

I hope you get answers soon

Good luck
Graham

[mamafigure]

Spring:I am sorry that you feel so terrible.  I can relate to a lot of what you said.  

I did go back to my local neuro. Hesaid that he could attribute my sx to nothing, and no idea what my problem(s) is, so he decided that it must be anxiety and wants to put me on meds.  I am furious.  I wish that I knew what to do now.

mamafigure

[graham]

Hi mamafigure, sorry to labour the point, but did you find out if your b12 level was tested and did they tell you what the result was.

As you are stll being offered no explanation I think it is worth following this up, even it it turns out to be no part of your condition.

Don't accept being told it is okey, ask what the figure is. If it is  anywhere in the 200's (pg/ml) range, bring this up again with your doctor for further tests as above.

Good luck
Graham

[mamafigure]

I looked up my B12 - It is 415.  
Is it possible to have a CIDP or CIDP-like disease with 3+ reflexes?

mamafigure

[graham]

Hi Mamafigure, I don't know about CIDP so I can't comment there. Your b12 level may not be seen as particularly low although I have seen people advised to try and get it higher.

It all depends which "experts" you want to believe. In japan the normal level is 500-1300 pg/ml. It certainly would not do any harm to supplement with b12 but there are people who could advise you better on this topic if you want to log onto Braintalk.org and click on the peripheral neuropathy forum where there is real expertise in this field.

If you wish to address a question re your b12, Rose has great knowledge on the subject and would give you good advice.

Good luck
Graham

[mjfromep]

This sight is great. Not because of all of you are so miserable, but because this weird, one of a kind problem
I have is not one of a kind. I have had everything but the swelling of my face. My drs. and neurologist have no idea
what it is. They sent me to Mayo clinic for testing. Two weeks in Dec. and two weeks in Jan. They did every test possible, except for one, a sweat test. They know I have nerve damage, but don't know from what or why. They said they can usually come up with a diagnosis after about a week of testing, but I have them stumped. And now it just keeps getting worse. After having been so active, this has really done a number on my
attitude. Oh well, I guess we deal with it the best we can.

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