Diagnose my husband

[karinothing]

I posted this on MMM a while back but they suggested I ask on here since the audience is wider so...

DH has been having nerve pain. It is all over his body and not localized to any one area. IT basically feels like his skin is on fire. He says he experiences it about 99% of the time and the 1% is when he first wakes up, but it starts soon after. 

He has had MRIs of the spine and brain. He has had x-rays. He has had an NCV and EMG. The images showed mild degeneration normal for his age and the other tests were normal. Lately he has also experienced back pain, but he has full ROM (Not sure if these are connected). 

Any ideas?

[karinothing]

Jan 4, 2016 15:26:04 GMT -5 tillie said:

Has he had bloodwork? Diabetes gives people nerve pain.

Yes all blood tests have been normal 

[Deleted]

How is his Vitamin D?
Any recent traumatic events?
Does anything help the nerve pain?

[Deleted]

Is it only topical skin, or muscular?
What type of specialist is he seeing?

[scottyderp]

Diabetes? Sjogrens? MS? Shingles? Although the latter wouldn't be widespread I wouldn't think.
www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#3208_4

[karinothing]

Jan 4, 2016 15:25:31 GMT -5 Lucy Honeychurch said:

CRPS?

Hmm. It doesn't sound like this from the description since there is no swelling or skin color/temperature changes. It also seems like CRPS is more localized? 

[karinothing]

HE is currently seeing a neurologist. I am not sure who else he should be seeing. He has had blood work testing vitamin D and iron levels, all normal.

NO recent traumatic events, appears only topical, and nothing helps.

[Deleted]

Perhaps seeing a rheumatologist may be helpful?

I feel for him, burning nerve pain sucks so hard.

Is he on any medications? Cymbalta and Lyrica may help? They did for a short while with my nerve pain (I now know the source, but didn't for a long time)

[karinothing]

Jan 4, 2016 15:28:18 GMT -5 scottyderp said:

Diabetes? Sjogrens? MS? Shingles? Although the latter wouldn't be widespread I wouldn't think.
www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#3208_4

MS would have shown up on MRI. No evidence of shingles. Sjogrens generally impacts women, but he doesn't have any of the tear/salvilary gland symptoms which are think are the key there. Doctor said not shingles or post shingles pain

[karinothing]

Jan 4, 2016 15:34:50 GMT -5 calamity said:

Perhaps seeing a rheumatologist may be helpful?

I feel for him, burning nerve pain sucks so hard.

Is he on any medications? Cymbalta and Lyrica may help? They did for a short while with my nerve pain (I now know the source, but didn't for a long time)

Thanks, he isn't taking any medication yet. The doctor mentioned those, but I think he is afraid of the side effects. I will suggest a rheumatologist next. 

[scottyderp]

Jan 4, 2016 15:35:04 GMT -5 karinothing said:

Jan 4, 2016 15:28:18 GMT -5 scottyderp said:

Diabetes? Sjogrens? MS? Shingles? Although the latter wouldn't be widespread I wouldn't think.
www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#3208_4

MS would have shown up on MRI. No evidence of shingles. Sjogrens generally impacts women, but he doesn't have any of the tear/salvilary gland symptoms which are think are the key there. Doctor said not shingles or post shingles pain

No offense, but my doc is considering an MS diagnosis for me and my MRI is clear. She is a good doc.

[karinothing]

Jan 4, 2016 15:38:48 GMT -5 scottyderp said:

Jan 4, 2016 15:35:04 GMT -5 karinothing said:

MS would have shown up on MRI. No evidence of shingles. Sjogrens generally impacts women, but he doesn't have any of the tear/salvilary gland symptoms which are think are the key there. Doctor said not shingles or post shingles pain

No offense, but my doc is considering an MS diagnosis for me and my MRI is clear. She is a good doc.

No offense taken! I just assumed the MRI would have showed it. I will ask DH more about it (I haven't been to the Dr with him, and he isn't the best at relaying information) he just said they ruled out MS I am not sure what tests were done to do that, but I will make sure to ask. He is male (obviously) and hispanic so I know that puts his risk of MS pretty low. 

[scottyderp]

I hate to bring this one up because it's tricky and makes people extra-nervous, but Lyme?

[Deleted]

One neuro told me a clean MRI of brain and C-spine ruled out MS, but another said it did not.

Has he been tested for Lyme?

He needs to find a "Dr. House" who sees him as a challenge

[fortnightlily]

I don't have any advice, just wanted to say I'm sorry you guys are dealing with this

[karinothing]

Interesting about Lyme, I will have him bring it up to the Dr. He hasn't experienced any of the other symptoms of Lyme, is it possible for it to have nerve pain as the ONLY symptom?

[lovelyshoes]

I would make sure that he is seeing a neurologist in a big group, or a hospital with a big neuro department. They are all so specialized and it would be good to have a few sets of eyes on him. This is based on my personal experience.

[lg28]

MS?

Whatever it is, I hope they find out soon

[panbitch]

Fibromyalgia was my first guess, I'm not a Dr. I'm an armchair Dr. House.

[Deleted]

Jan 4, 2016 16:35:36 GMT -5 panbitch said:

Fibromyalgia was my first guess, I'm not a Dr. I'm an armchair Dr. House.

Yep, mine too, but I'd because it's in the forefront of my mind.

[rugbywife]

Lupus?

ETA: Lupus is a dx used when no other dx can be assigned and the symptoms fit.

[womet]

It sounds like the all over pain my H has from fibromyalgia. I also think he should see a rheumatologist.

[cleo29]

I would get a second opinion. A little story here. My aunt, who has non-hodgkins, had a chest x-ray to see how her lungs were looking. Just to get a second take, she sent them to her brother who is a doctor. He told her, "your lungs look fine, but your spleen is ridiculously enlarged and needs to be removed ASAP." none of the other doctors who looked at the x-ray said anything to her about it.

A second or even third set of eyes is never a bad thing.

[karinothing]

Jan 4, 2016 18:13:48 GMT -5 womet said:

It sounds like the all over pain my H has from fibromyalgia. I also think he should see a rheumatologist.

I don't know about FMS only because he neve has days where he doesn't want to get out of bed due to pain. I am not sure if that makes sense. Like it never impacts his daily activities. I feel like FMS impacts daily activities.

[Deleted]

Jan 4, 2016 18:25:52 GMT -5 karinothing said:

Jan 4, 2016 18:13:48 GMT -5 womet said:

It sounds like the all over pain my H has from fibromyalgia. I also think he should see a rheumatologist.

I don't know about FMS only because he neve has days where he doesn't want to get out of bed due to pain. I am not sure if that makes sense. Like it never impacts his daily activities. I feel like FMS impacts daily activities.

It can, but not in all cases.

[sparkythelawyer]

Shingles

[karinothing]

Jan 4, 2016 18:38:24 GMT -5 @kittensandkazoozles said:

Jan 4, 2016 18:25:52 GMT -5 karinothing said:

I don't know about FMS only because he neve has days where he doesn't want to get out of bed due to pain. I am not sure if that makes sense. Like it never impacts his daily activities. I feel like FMS impacts daily activities.

It can, but not in all cases.

Interesting. Reading about it, it doesn't sound like it he doesn't have tenderness at all and it's not musculoskeletal pain. He said it feels like pin and needles all the time. I guess the Dr is leaning towards something to do with his back so she ordered more images of a different part. It sucks how long all this takes

[karinothing]

Jan 4, 2016 18:51:03 GMT -5 kooshball said:

Jan 4, 2016 15:48:04 GMT -5 karinothing said:

No offense taken! I just assumed the MRI would have showed it. I will ask DH more about it (I haven't been to the Dr with him, and he isn't the best at relaying information) he just said they ruled out MS I am not sure what tests were done to do that, but I will make sure to ask. He is male (obviously) and hispanic so I know that puts his risk of MS pretty low. 

weird. I never heard there were low/high risk groups for MS.

Caucasian women get it at the highest rate and it is rarely found in asians. Caucasian women are also at highest risk of most of the autoimmune disorders folks suggested. I have no idea why.

[Deleted]

Jan 4, 2016 18:51:03 GMT -5 kooshball said:

Jan 4, 2016 15:48:04 GMT -5 karinothing said:

No offense taken! I just assumed the MRI would have showed it. I will ask DH more about it (I haven't been to the Dr with him, and he isn't the best at relaying information) he just said they ruled out MS I am not sure what tests were done to do that, but I will make sure to ask. He is male (obviously) and hispanic so I know that puts his risk of MS pretty low. 

weird. I never heard there were low/high risk groups for MS.

Caucasian women between ages of 20-40 are highest risk and when typically diagnosed.

Kari, I hope your husband gets some answers. I don't think it'd be a bad idea to get another opinion and try another specialist like a rheumatologist.

[kirra]

Jan 4, 2016 15:32:25 GMT -5 karinothing said:

HE is currently seeing a neurologist. I am not sure who else he should be seeing. He has had blood work testing vitamin D and iron levels, all normal.

NO recent traumatic events, appears only topical, and nothing helps.

Did they check B12?