Undiagnosed after a year... any suggestions appreciated
 

My husband has been suffering for over a year now with an as-yet undiagnosed illness that include symptoms of peripheral neuropathy. There is so much first-hand experience on this site, I hope maybe some suggestions could come my way.

Here's a summary of symptoms and events that may or may not connect, but worth mentioning.

• Elbow tendonitis for 8 months - not unusual due to occupation
• Sinus and ear infection that lasted over 4 months, 4-5 different antibiotics tried
• Not long after sinus infection seemed to resolve, developed tingling sensations down outside of both forearms
• Within 2-3 days, tingling sensations down both lower legs into feet
• Pain - pins and needles in muscles, severe joint pains - lasting several minutes to half an hour
• Progressive muscle weakness, starting with hands / forearms, progressed to legs
• Loss of reflexes - tapping with hammer shows no response
• Neuro symptoms - transient - difficulty speaking, difficulty forming words, stuttering (no history previously), mental fogginess, memory difficulties
• Transient bradycardia - heart rate 50-55 bpm

History of: diverticulitis, asthma, allergies

Only unusual family history: Father has Myasthenia Gravis

Radiology: MRI of brain & spinal cord, CT of abdomen both normal

EMG and NCV: Normal

Lab tests: Only blood work abnormal is Sed Rate (>100 mm/hr) and C Reactive Protein (>12).

Muscle biopsy: Totally normal

His 'diagnosis' right now is fibromyalgia, but we and the doctor both know that's not all this is. He is on a pharmacy of meds: Lyrica, Cymbalta, Seroquel, Tramadol, Hydrocodone as needed, and prednisone.

The meds help, but don't eliminate, his pain. Prednisone is the ONLY thing that improves the muscle weakness. However, having already been on it for 6 months and seeing another rheumatologist, he is being weaned off of it for further testing. The more the dose is decreased, the more weakness returns. He's also having headaches every day, which are progressing to starting earlier and earlier each day.

The new rheumo mentioned Gullian-Barre or another viral syndrome, but he's had no paralysis.

Any thoughts would be appreciated. If the new rheumo can't diagnose him, our next referral will probably be several states away to a large clinic.

Welcome to NeuroTalk:

I wonder in reading this history if your husband was given antibiotics in the fluoroquinolone family, or Flagyl? (there are others also less commonly used like Zyvox and Tindamax).

Fluoroquinolones can cause tendon damage and ruptures. The ruptures may occur up to a year or more after use of the drugs.
This family of drugs are also neurotoxic and can cause peripheral nerve damage and in the elderly can affect the CNS as well.
This is thought to be permanent, but Dr. Jay Cohen, MD thinks some supplements may work for it.

More information and links here:
http://neurotalk.psychcentral.com/post661103-2.html

There are suggestions that use of steroids and/or NSAIDs with fluroquinolones may make the reactions worse.

The mechanism of this damage is not understood clearly yet.

Thanks for the reply! I went through his script history and found that for at least 4 days approximately 5 months before onset, he did take Levaquin and Medrol (methylprednisone). I remember he asked the doctor to switch him to a different antibiotic, but I can't remember right off why (we weren't married or living together). I'll ask him. Then about 2 months later, he was on Cipro drops for what the doctor said was an outer ear infection. I looked at your link and for the last hour have been searching around the internet... his symptoms all fall within what other people have reported as adverse reactions, and it makes sense that prednisone alone helps this condition. We will definitely look into this possibility more.

A side note... this information has me worried for myself as well, since in early May I took a course of Levaquin AND Flagyl for C. difficle colitis!

Is he on asthma meds such as Advair? If so, how long? I have many of the symptoms you describe and they all seem to be dose related with the meds. I think my reflexes and speech have always been normal however.

judi

Some people are more prone to damage for some reason.

There is a book written about this by Stephen Fried called
Bitter Pills. His wife developed a permanent seizure disorder from ONE dose of Floxin. Floxin is not used much anymore orally. But Levaquin is a chemical derivative of it.

http://www.stephenfried.com/bitter-p...pillsbook.html
This is an interesting book, I have a copy of it myself.

Doctor Cohen suggests magnesium for fluoroquinolone side effects. And with your hubby's high C-reactive protein, you might try high dose Vit C. There are studies showing Vit C will lower C-reactive protein. Also in patients with potential RSD (a form of neuropathy) high dose Vit C works as well.
I'd use Ester C form (easy to tolerate) and at least 1000mg a day. Discuss this with his doctor to see if it would interfere with his other meds.

This is a PubMed paper on C-reactive protein and Vit C:
http://www.ncbi.nlm.nih.gov/pubmed/18952164

I hope he is not on a statin drug at this time...you didn't mention any. Statins are very hard on the nervous system and cause neuropathy in some people.

He was only on Affair for about a week spring 2011. He did have an unusually bad spring that year as far as asthma.

silly question.. but what was his occupation. was he dealing with chemicals.. or possible plant life.. I know as a past landscaper. that drugs and contact with certain plants or continued exposure to sun can cause adverse reactions to the medicines he may have been taking... even construction workers deal with chemicals through treated wood, ,metals, insulation, paints etc.. I think its all worth looking into... good luck, my prayers be with you

Not a silly question at all. He's in IT, so I don't think there's enough chemical exposure to cause this.

My wife worked in IT most of her life. I just read her the above quote, and her response was, "HA!" :rolleyes: She was constantly assaulted by carpet & adhesive (carpet & wall covering) fumes, air-conditioning contaminants, fumes from chemicals put on the office landscape plants, pvc fumes from vinyl in office equipment, formaldehyde from particle board in office furniture, asbestos insulation in older buildings, cyanide from isocyanates in urethane foam in office furniture, paints, & furniture finishes, copy toners.... and the list goes on. She also has tinnitis she suspects may be due to decades of white noise generators.

Offices aren't any safer than other environments when you think about it/dig in a little... ;)

Google: chemicals found in office air

Doc

Great points I hadn't thought about. I guess in reality everyone is exposed to far more chemicals than is safe. We have an appt with Rheumo next week.... none too soon either as he is deteriorating again since tapering down the prednisone.

Hubby is getting worse as we taper the prednisone. He's on 7.5 mg now and is having pains in tendons in both ankles, stabbing pains in random muscles, and - the most disturbing - headaches within a couple of minutes of being in an upright position (standing or sitting) that we and our GP believe are coming from orthostatic variations in blood pressure (which we've proven is happening). He has a rheumo appt. on Thurs for them to start looking for things all over again on the lower pred so it doesn't mask illnesses... any advice, suggestions, etc before we go?

Sounds like he needs Immune Globulin especially if they think he has Gullian-Barre. GBS is not easily diagnosed by many doctors; but just ask if he can be infused to see if it helps.

Thanks. I was very disheartened by the rheumo visit today - we didn't even see the doc, only the NP, and all she did was an exam, repeat his sed rate and creatine kinase, and say come back in 2 months after you're off prednisone.

Hi medtchva,

Did you make the appointment to see the doctor or an NP? Maybe I've been fortunate, but anytime they've tried to pull the ol' switcheroo on us, they've at least advised us ahead of time so we could either insist on seeing the doctor we're paying to see (the bill is the same either way), or opt out of the appt.

To pull that kind of switch without notice is, IMO, unethical.

Please don't misunderstand me; NPs, PAs, etc. have their appropriate functions, and we have certainly seen them, but it depends on what for. I don't know that anything can be done about what's happened (except charge you for another visit) except let them know that when you make an appt. to see your DOCTOR, THAT is whom you expect to see (or be advised ahead of time so you have the option of rescheduling).

I have "fired" a couple of doctors who felt they were too important or too busy to see me personally, but there was a little more to it than just that.

Doc

What we were told at his last visit is that when he came back, it would be to see the doctor. At first I thought the NP was gathering any new history, etc. since the last visit and the doctor would come in. I'm pretty sure we're not going back. The really disheartening thing is that when she said they'd repeat the CK, CRP, and liver profile, I said "Is that all you're drawing today?" She said "Well, all his other tests have already been negative." So what the hell are they going to do in 2 months, if they don't seem to have any new or repeat tests in mind?

On top of this, he's getting worse. His blood pressure is jumping up and down and he's having headaches if he's upright (sitting or standing) for very long. Sometimes it's 15 minutes before it gets so bad he has to lie down... other times it's only a couple of minutes. The last 2 weeks he's spent most of his time lying down... it's so sad!

We have looked at an integrative medicine physician near us. However, she doesn't accept insurance and I just don't think we can swing the up front costs. We live in central VA, so now we're considering UVa or Duke.

Has your husband ever taken any of these antibiotics: Ciprofloxacin, Levaquin or Avelox. They cause all of these symptoms. I have had a reaction to Ciprofloxacin which has caused me to have tendon problems in both shoulders and have numerous other side effects. These antibiotics which are called fluoroquinolone have a black box warning on them because they can cause tendons to rupture. I belong to groups on facebook called Fluoroquinolone Toxicity Group. They have a lot of information. Please go there and read about these drugs. I hope you can find help for your husband.

Yes, he did take a small dose of levaquin and external cipro before this happened. Another person in the forum responded with this info to my initial post, thanks.

We went to see a holistic and Chinese medicine practitioner last week. He thinks the problem is something infectious. We're waiting on the results of two additional Lyme's disease tests - hopefully will find out this afternoon.

Also more great news (HA) - his long term disability insurance cut him off as of last week.