not diagnosed but full of questions

Your symptoms could be almost anything and it is hard to comment without all appropriate testing. i.e. NCS, LP, bloodwork for autoimmune factors. My husband has CIDP–MADSAM and he has almost no sensory sypmtoms. He has muscle atrophy, decreased reflexes, and lost of function of rt hand and foot drop. i.e. couldn’t hold a coffee cup, turn a key etc. Sounds like you have some sort of peripheral neuropathy happening. Good luck in finding answers.
Laurel

In general, CIDP usually presents symmetrically, if one foot is numb the other is numb. Begins in feet and/or hands & proceeds in an ascending fashion (up the legs or up the arms), with loss of feeling & motor function. Reflexes usually absent. These are just generic symtoms as to how it usually begins, one must have an EMG & spinal tap for a more definitive dx. They used to also give sural nerve biopsies routinely, but not so much anymore. Your symtoms are so varried, leads me to think maybe something else might be going on?

Your symptoms are very similar to my husband’s . His starting with mainly sensory and progressed to weakness in arms and legs and some cranial symptoms over about 8 weeks. He also was refereed to a psychiatrist and was ignored as his symptoms were not “classic”. They did not show on MRI or EMG but were definitely REAL.

Finally he went to NYC (we live in Ontario Canada) where he was diagnosed, after a spinal tap, with a post-viral , small fibre neuropathy and given 4 days of IVIG. It helped immensely,

He has seen 6 neurologists (5 in Canada) but has received no further treatment since returning to Ontario in April .

Keeping pusihng because without “classic” CIDP symptoms it is hard to get treatment.

Keep us posted.

Kathy

[FONT=”Microsoft Sans Serif”]this could be anything and your symptoms, while i/we are not doctors or diagnosticians, sound very disturbing and some things may be time sensitive.

that’s my opinion.

prednisone may be a cheap initial treatment to consider if your doctor thinks the condition is autoimmune/inflammatory in nature. just a thought.

it also may be prudent to begin setting up medcaid in the US: [url]http://en.wikipedia.org/wiki/Medicaid[/url]

just for fun, i tossed your symptoms in a search on found this:
[url]http://www.fibromyalgia-treatment.org/Symchart.htm[/url]

best of luck–keep us posted.

alice[/FONT]

Yep, I agree it could be almost anything. And, yes, standard CIDP is generally believed to be symmetrical. However, other variants of CIDP may not be symmetrical.

First of all, I wanted to understand that word you used, ‘formication.’ Interestingly, to me, it is a word not found on a search of this site except in your post. So, I looked it up as much for my sake as for the other readers here.

“Differential diagnosis

Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as diabetic neuropathy, skin cancer, syphilis, or herpes zoster.

Formication can also sometimes be experienced during high fevers. Itching, tingling and formication often occur when surfacing from a dive or during ascent to altitude (decompression sickness or the bends).

It can be a side effect of Ritalin (methylphenidate), Adderall (dextro/levo-amphetamine) and Lunesta (eszopiclone) and other prescription drugs or of cocaine or amphetamines. (Accordingly, it goes by the slang term “coke bugs”.) Formication can also be a withdrawal symptom of weaning oneself off of cocaine or amphetamine. It can also accompany alcohol withdrawal in alcoholics, along with delirium tremens, and can often be accompanied by visual hallucinations of insects.”

Now, I’m not suggesting you have any of those things. Only that nobody here has used that term before.

Dr Lewis says, in an article linked to by Emily’s mom that “Papilledema with pseudotumor cerebri syndrome (eg, headaches, transient visual obscurations, pulsatile[COLOR=”Red”][B] tinnitus[/B][/COLOR], visual field defects) are observed rarely in patients with CIDP and are due to a very high CSF protein level (usually >1000 mg/mL).”

So, the spinal is a good test to rule things in or out. However, even a negative spinal tap does not rule out CIDP.

Time may or may not be of essence. My question would be- what tests can I get done, at home, in the next month? If you have to wait for 3 months to see a specialist why, heck, make the appointment and take your trip.

good luck

Cope,

I would have to agree with Alice that this may be fibromyalgia if your tests are “normal.” I presented with very bizarre symptoms, a lot of neurological symptoms, after the H1N1 flu vaccine last year. I went to 6 neuros in total and all my tests were “normal”, (3emgs/ncv’s, no spinal tap, skin biopsy, sweat test, numerous blood tests, MRI’s) despite losing my reflexes, having arm weakness, numbness/tingling, hypersensitivity, etc. The neuros said it could be mild GBS or dysautonomia (where your autonomic nervous system goes out of whack.)

I am now treating with a rheumatologist who is on the working diagnosis of fibro, but is still doing tests. My nerve issues have improved, but are not gone completely, and have been replaced by muscle and joint pain and a host of other issues, all very uncomfortable and unpleasant. Mind you, I had NO to few problems before this vaccine so it was all triggered by this, even if the medical community will not totally accept this. I would recommend that you keep exhausting your options with the neuros, and make sure that you see good ones.

As for tinnitus, you should have a hearing exam by an audiologist. I have had moderate to severe hearing loss since birth, and oftentimes get tinnitus. It can mean that there is some hearing loss going on, but most often, it is benign. Go get an audiological exam to be sure. If there is hearing loss, you want to catch it early, and see an otolaryngologist to see if there are any preventative measures. I was recently told by my audiologist that if you have a virus that can cause hearing loss, there is a 48 hour window in which to prevent this. Now who knows that this is happening and can catch it in time? Beats me, but I suspect that may be what happened to me since my hearing loss was not diagnosed until I was 3. I learned to read when I was 3, so I must have had hearing at some point. If you do get hearing loss, there are hearing aids and cochlear implants. I have worn hearing aids my whole life, and have gone to normal schools and law school, so try not to worry about this so much! 🙂

Good luck.

I wanted to add that I have had muscle twitches for a YEAR, daily and hourly, constant. They started one month after the vaccine and have never gone away. Muscle twitches are a part of fibro, but they can also be indicative of another disease, like CIDP, RA, etc. so you really need a thorough exam.

Years ago I had tinnitus and saw a doctor about it. He held my hand and questioned me about anxiety. In the end he told me that it was likely anxiety related and he was right. Once he discussed what was bothering me in my life (I have MS not yet diagnosed then), the tinnitus went away and never returned. Maybe your other sx’s are so anxiety inducing that they are causing tinnitus?
Laurel

Every month counts… especially in terms of treatment, and recovery! It took me 14 months and it wasn’t a minute too soon! For several years things were in total abayence, meaning things didn’t get worse, and..at times even better!
Note also that set-backs are the norm, and be prepared for that.
As for Nerve testing? I showed only slight diminishing of functions at first. It took a good 6-9 months of partial immobility and inactivity, plus increased nerve pain progression. It’s well documented that many CIDP cases do not show total disability to the degree of GBS folks.
Read this web site about nerve and muscular diagnostics…it’s VAST. It also will let YOU know that your doc can’t know about ALL of this?
urlhttp://neuromuscular.wustl.edu/alfindex.htmurl and this portion in particular: urlhttp://neuromuscular.wustl.edu/antibody/pnimdem.htmlurl
Do NOT LET THIS SCARE YOU! Use it’s info as your tool to zero in as to what you have! Read up about the testing and know what you are in for…it’s a long road? But much shorter if you go thru ‘the mill’ and get diagnosed and treated! At least? Find out and keep track of the tests that are done – get copies!!! They can tell you more than you mite want to know? Or not much -either way you know where you stand or wobble in some quarters.
Whatever you do? Keep your descriptions as concise and as consistent as possible! IF you have new ‘developments’? You can use your past consistent descriptions to augment or amplify and new ‘developments’!
AS FOR ‘ANXIETY’? DUH!???? Who wouldn’t be anxious with this stuff! If they’re NOT anxious? I’d really worry.
Keep faith, keep at IT and Bless you for your efforts!!! It’s not easy I know, but it’s worth it in the end. HUGS!!!!!!!!

“AS FOR ‘ANXIETY’? DUH!???? Who wouldn’t be anxious with this stuff! If they’re NOT anxious? I’d really worry.”

Sometimes I think the above is why this forum is dying a slow death. i.e. the sarcastic responses. I was just offering a personal experience trying to reassure her, and getting a comment like that makes me want to toss in the towel on ever bothering to respond.
Laurel

Hey, we’re all in this together. It is well documented that anxiety can bring about all sorts of physical symptoms, including tinnitus and even tingling and other neurologic-type symptoms. Some people have actually lost their eyesight!

Having said that, it is vitally important to undergo all relevant medical testing to rule out — or in –an underlying medical cause for the symptoms.

Of course we are all stressed and anxious to some degree with CIDP. It is a formidable foe. All the more reason we need to help each other as much as we can here. Let us not judge others too quickly. People have different viewpoints, and different ways of handling things and of expressing themselves. Let’s respect that, with compassion for others and ourselves.;)

Cope good luck with getting things sorted out when you get back to the States. In all likelihood, the steroids would certainly be a good test to see if they address the tinnitus and other symptoms. And it does seem that there is a lack of consistency with these neurologists as far as what they believe to be symptoms of CIDP i.e. the tinnitus. Many people on the forum have commented on this over the past years concerning many different symptoms. Here is a blog on CIDP in which tinnitus is commented on [url]http://rossanascidp.blogspot.com/p/about-cidp.html[/url] Keep us posted.
Laurel

Wow, I can understand your challenges in trying to cope (smile) with all this.

Please confirm, since I have not had these kinds of tests, that for the evoked potentials you had:

“One set of electrodes, which will be used to measure the electrophysiological response to stimuli, is attached to the patient’s scalp using conducting paste.”

From what I read on-line there are three categories of evoked potentials and they are auditory, visual, and the kind you mentioned “Somatosensory.”

For the auditory you would sit in a soundproof room with headphones. For the visual you would sit close to a screen a watch a shifting checkerboard pattern. Finally, for the Somatosensory you would have tiny shocks delivered to an arm or leg.

The key to all of these are the pads pasted on your head.

Finally, is there any chance the secretary said you had abnormal motor and sensory results? Those kind of sensory tests involve the nerve conduction portion of an EMG/NCV and probably are not evoked potential tests.

No matter what, have the best possible holiday season you can muster.

Discuss with your doctor whether he thinks it is appropriate at this time to do further diagnostic testing, including a spinal tap, nerve or skin biopsy, etc. You can always also go to another neurologist and get a second opinion on your condition and whether you should undergo additional testing.