Not yet diagnosed but symptoms getting much worse after a year

Hi everyone

A little about myself. I'm married, 56 years old with a teenage daughter..

I was an avid runner upto a little over a year ago (January 2014). I stopped running (while training for the Boston Marathon) because of an ankle injury (posterior tibial tendon partial tear). As I was in physical therapy I started getting uncomfortable doing the exercises that put pressure on my forefoot. Over the next several months I would get numbness, tingling, twitching and sometimes cramping in my left foot. I saw a foot doctor at least a dozen times last year. As the months progressed I started getting tingling in one of my hands and a couple months later in both hands. Last summer I was feeling some heaviness in both my legs. I saw a neurologist, and a rheumatologist. Had a brain & spine MRI and lots of blood work as well as a nerve conduction test (probes, not needles). Every thing came back normal. Both doctors told me to go back to the foot doctor. The neurologist thought it might be stress induced but the only stress I had was from the symptoms, no stress before.

I apologize if this is long but also thought other people my be able to relate as well and just want to get a little bit of my history out there for my first post.

Anyway my regular doc prescribed testosterone gel as my levels were on the low side. I don't know if that had anything to do with it but my symptoms seemed to get a little better but didn't go away. I had stopped running but became quite an avid swimmer until a little over three weeks ago. Symptoms have come back fairly aggressively for me and never this bad before. Seeing some muscle wasting in my hand and feet. Both feet numb or burning most of the time. losing weight. Feeling some pressure in the side of my head, feeling off balance at times, hands feeling shaky, both feet numb on and off. Numbness is worse when sitting or driving the car. Wondering each day if I will wake up and be able to get out of bed. Btw I stopped taking the testosterone gel about two weeks ago after relapse or whatever you want to call it. I was taking 20mg of gel a day which I believe is a low dose compared to most who are on it.

Happy to share with anyone further. I know some here have dealt with this for years and my heart goes out to you.

Would love any tips on treatments that seem to help, minor or major. Also I know this is a rare disease but was wondering if any knew if there is any hereditary disposition? Curious as my Grandfather died when my father was a young boy. All I know is that he spent 8 years in a hospital before he died back in the 1930's. I have no idea what his illness was.

Also does exercise make symptoms worse for any of you? I was exercising regulary (mostly swimming and light weights). Have done very little last few weeks and feeling like I'm going downhill fast.

Thanks for letting me share and God bless you all.

P.S. Going in tomorrow for another nerve conduction test with a new neurologist. Needles this time (ouch!)

Swimming, walking and light weights... i use them all and they have staved-off health problems. I'm 65, yet people tell me I look 40 ish and older women at the pool become groupies.. which is annoying to my beautiful young wife.

You're spinning your wheels and wearin out the tread on them if you worry too much. If you get a confirmed CIDP diagnoses life goes on and you adapt to it.

The exercise thing- no problem for CIDP, but not so for Myasthenia Gravis, also a wasiting muscle disease; exercise will make it worse.

At 56 I was surfing 20 foot + waves, at 61 I was crawling from room to room in my house and in pain howls and bellows that would put a pack of wolves to shame .

My HMO, named after the German, Kaiser Wilhelm (I think, lol) misdiagnosed my CIDP for 10-12 years, and I, like you, felt my left foot and leg degenerate, whither before my eye. Eventually I became like Ratso Rizzo in Midnight Cowboy with a dragging dysfunctional handicapped withered limb and embarrassing foot... Surfing? Walking?... No, a cane, a walker and people feeling sorry for me.... and just when my golden years were shinning so bright.

And, I did run marathons (in Kauai, Honolulu, Maui) with no associated health problems. And I was a scuba diver and a professional classical guitarist... wonderful things in my life, ripped from me from a misdiagnoses by the German guy HMO.

I recommend becoming cynical and aggressive about treatment, try to become like a honey badger because you have a long road ahead if you have CIDP or other motor-neuron disease. In other words- learn to badger the insurance companies, the pharma penny-pitchers, the infusers companies watching their bottom lines and scammer rats nibbling at the edges of all who have chronic disease.

There is no cure for CIDP, except HSCT and you should keep that in mind, even directing your energies towards HSCT. IvIgG, steroids, PE and a whole host of exotic drugs may await you and CIDP ain't no picnic, no matter what people here or there or anywhere say. Treatments become a grind, cost time and money, and wear you down, nevertheless, the actual disease, when it really winds up is most times much, much worse then the grind of these treatments.

Swim and look up Franklin Roosevelt , his real health problems. If he'd been diagnosed correctly, CIDP would be a thing of the past.


You are hilarious! I love your sense of humor. Thanks for lightening things up a bit although by the end of your post I was not laughing anymore.

Good info. I was looking at the HSCT treatment you mentioned. It looks promising for MS, not sure what outcomes they've had with CIDP yet? Also looks very difficult (but not impossible) to be a candidate. For myself I think I have a lot more testing (at least several months away at this rate) before I could even be considered. It's maddening how long it takes to get in to see someone while your deteriorating. Have you considered HSCT for yourself?

I also grew up surfing and was still surfing mostly with my teen daughter as recent as last summer. Would love to hear some big wave stories some time. Thanks for your post!

P.S. I've read a little but still not too familiar with IVIG. Can you tell me how difficult it is to get, how long it takes and does insurance usually cover it? Thanks again

D&C, I thought I replied yesterday but don't see my post. If you didn't get it I just wanted to say thank you for taking the time to respond to my post!
So yesterday I was able to get in on a cancellation to see my new neurologist. She just did the lower extremity nerve conduction test (is that what emg stands for?). She wouldn't comment on it but only said she wants me to come back for an upper extremity test. My wife went with me to the appointment and said she heard her say interesting once during the test. I was too focused on anticipating the next jab and zap that I didn't hear her. She told me I need to be relaxed before she zaps me to do the test correctly. Not so easy at first!

Anyway she came highly recommended from another neurologist so I hope we get somewhere soon. It's tough having to make appts that are 4 and 5 weeks out just to do one more test when you know it's going to probably take a multitude of tests before getting any good answers and you feel your body dying on you.

The mri's I had last summer were of my brain and the back of my neck and they couldn't really find anything of significance. So it looks like the next step would be the spinal tap? I am not diabetic or even close. Weight has always been good although I'm a little worried as I've been losing weight I can't afford to lose the last couple weeks. Heart rate and pressure has always been good but lately the bp has been up. Also feeling tightness in my upper abdomen that can make it hard to sleep sometimes. Ok I don't want wear out my welcome. Always happy for advice and would love to be able to encourage anyone else going through tough times.

Thanks again!
DazedandConfused said:

Hey, Billion. Good to see your post, and something struck me after I read it.

You were a runner for long time. Now, I may be way off base, here...but have you when you said you had diagnostic studies of your "spine", was that cervical, thoracic, lumbar, or all three? When the doctor said the tests were "normal", did he give you a copy of the radiology report, where the radiologist's impressions and findings were listed?

The phrase "normal" is very vague, and relative...for a man who is 56 years old and ran marathons (high spinal impact activities). Just a suggestion, you may want to ask for your records, and then look at the MRI findings. Did the doctor say "normal for a man your age and after having run marathons"? Or, did he just say "normal".

A few things I've learned along the way in my life (having had two lumbar spine surgeries and a cervical fusion) is that both your lumbar spine and C-spine can cause strange symptoms when nerves are compressed or impinged upon.

Maybe you have a couple of problems that are a mimic of CIDP type of symptoms, and perhaps you need to look at it on an orthopedic basis while you are also being worked-up for possible autoimmune problems? Your cervical spine can cause problems all throughout your body, if you have spinal cord impingement.

If you have not had a lumbar puncture, then you probably should ask your doctor about that, because in order to determine if you have many common neurological/autoimmune problems, the lab will need to analyze the spinal fluid for all kinds of fun things, like proteins, sugars, etc.

Are you diabetic, and if you haven't had a glucose tolerance test, perhaps you could also talk to your physician about that, as well.

There are so many things that can cause neuropathy and your symptoms in general, you'll probably (not to scare you) have to undergo quite a few more diagnostic examinations.

The "gets worse while sitting" just "screams" nerve root compression in your lumbar spine, or even an S-I joint problem, bilaterally (hip area).

What body part are they doing the needle EMG's on? Lower extremities, upper, or both? These are the kinds of details that the group tends to need to hear about (just speaking in generalities to guide you) so we can comment with a higher level of understanding.

From my time handling bodily injury claims (I am *NOT* a medical expert, and please don't let the term "Moderator" across my photo make you think I have any more knowledge than anyone else here, okay?) I've learned that it can take up to 6 months to a year for nerve conduction studies and sometimes EMG's to "turn positive" after a nerve lesion, unless it's really a significant one.

I can only guess about the testosterone, but it is a hormone, but also a steroid. It's possible that it acted in part, as a slight anti-inflammatory agent, which may have made you feel a little better(?)

As you read current and past discussions on the board, you will find that many physicians use methylprednisolone or prednisone as a front-line Rx to reduce CIDP symptoms. They are steroid compoungs, so it's possible. Probable? Who knows...but possible that the testosterone helped on an anti-inflammatory basis.

In closing, you should push as hard as you can for a diagnosis, no matter what it may be, so you can begin proper treatment for WHATEVER is causing your symptoms. The faster you can begin proper treatment, the less nerve damage can occur (it varies, of course, depending on the severity of the initial onset and subsequent flare-ups).

And while you may have stress, every time a doctor reached his or her knowledge limits (because CIDP is relatively rare, and most physicians have only read about it...IF they have even heard about it), their likely response when out of ideas is to blame the patient. Not all doctors do, but enough to make you frustrated, and to make you feel possibly upset that they are telling you something you know is not true.

Perhaps the doctor was implying you were/are having panic attacks. Well, they don't last for days or weeks, in my humble, non-medical experience.

As I've said to others on the site, you know your body better than anyone, because you have lived in it for your entire life. The doctor works only on what he or she can "see" on a scan or on a lab report.

Just because they cannot see it, doesn't mean it doesn't exist. So, steel yourself for future situations where a doctor may tell you "it's just stress" and if you are seeking one "recommendation", it is to see the right specialist.

If you want to be worked-up for a neurological disorder, then go to a neuro-physiologist (not just an "average" neurologist).

Good luck on your EMG's, and please let us know how things work out as you go along.