What's wrong with me?
 

Hi Folks

My story

Everything started 6 1/2 months ago.

I had shoulder surgery on both shoulders for rotator cuff tears - 5 weeks apart. 3-4 days after the first one I got numbness at the base of my thumb / wrist. Next came a severe pain when straightening my are all the way - that went away after 4 weeks. Ortho said no idea whats going on. I went to a Nero and after doing nerve and muscle test ( ~30 days after surgery ) found no issues. Thinking from Nero was slight nerve damage from surgery sling at triceps. Felt it was OK to go ahead with 2nd shoulder in a week - sent note to Ortho do protect the tricep.

8 days after second surgery - same nerve problem on that side without the pain. Just numb - sensitive to touch - tugging feeling and pins and needles.

5 months after last surgery - no changes BUT I started getting pain in my left toe when stretching. 3 weeks later The left side of my foot and small toe got numb and toe pain got worse. Now hurts with shoes on. At this time I'm starting to feel pin prick like feelings in my legs and arms. Both upper and lower. Some around my stomach also. My legs and back get itchy. Now 3 weeks later ( yesterday ) my right ( opposite foot ) big toe ( tip ) is slightly numb and the bottom my right foot feels slightly numb. I get small pains ( last a second or so ) around my feet / ankles. The bottom of my feet feel a little sensitive.

I have had a FULL blood work done - heathy as a horse!

I'm 57 and very " healthy ". Race motorcycles - mountain bike - very active. Physical work also. Very good shape. Never had any health problems - on no meds.

After about 3 months from surgery my Nero had me get and MRI. Came back with a not so great C6-7 - pinching on nerve. The nerve from there goes to the very part of my thumb / wrist area I've been dealing with from day one.

So my Nero feels that is my problem, but how does that explain the new feet and leg issues?

Things seem to be getting very slowly worse - as in more areas are getting numb and more quick shots of pain here and there.

The feet thing is REALLY freaking me out bad!!! I am self employed with a kid in college. Not to mention all the activities I love to do.

I'm going to see my Nero tomorrow - was there last week - because of the new right foot issue and all the other pins and needles around my body.

This is a very scary deal - not knowing how bad it's going to get and when it will stop progressing!

Does this sound like PN to you guys? My Nero never mentioned it. I just came across it doing research.

Does PN come on like this - slowly? Is there I can do to help it from progressing?

Please help if you have any thoughts on my condition.

Thanks
Dan:)

Some questions -
What symptoms & testing for the original dx of rotator tears ?

No MRI of C spine before the surgery ??

Same Nero this whole time? Did he do the surgeries?
Might be time for second independent opinion, they usually won't want to admit if there was an error..

Get copies of all tests and imaging reports, in case you decide to get other opinions, it's easier if you have then yourself vs having to have things sent from one doc to the other docs..

Some people do create excessive internal scar tissue, but may or may not be the case.. keep looking for answers.

I don't know if any PT or chiropractic or bodywork of some sort might be helpful or not, I'd be tempted to try some of those at least a few times..

Thanks for the reply!!

I had a MRI of my shoulders. I had been struggling with shoulder pain for 3-4 years. Originally thought it was bursitis but after much PT and time we did an MRI and then did both shoulders.

The nero is not linked to the Ortho in any way.

No MRI's of spine before surgery.

I have a folder with all the medical stuff - MRI discs and reports.

Did PT for ~10 weeks after second surgery - for both shoulders.

I have gone to my Chiro once.

I've been doing deep tissue massage every week or so.

I have been to acupuncture 3 times now.

It seems like some of this helps a little every now and then. Still going to all above.

Does my case sound different than PN ?

As I get stronger I do more work - which works the upper back and shoulders kind of hard. I also go to the gym and have been building up slowly on the weights - more reps not heavy weight. Loss a lot of muscle while rehabbing.

Both work and working out seem to heighten the nerve issues in my wrists.

Now I'm wondering if the added work load and working out is adding more inflammation and causing the new symptoms with the feet??

The Nero said to keep doing what I"m doing as long as I don't over do it?

BUT how can pinched C6 neck ( bulging disc ) and or shoulder scar tissue and up effecting my feet - legs and all else?

Thank you
Dan

Dan, practically all of us were fit and healthy and active and then Boom! You have something going on since pins n needles and numbness are nerve related.

I hope for your sake Im wrong and that this thing quickly passes however Im guessing you were always going to get PN but the surgery or the meds taken have been the trigger.

good luck and good support here

Hi Dan and welcome,
Before I developed neuropathy I was as the gym 5-6 days a week lifting and running. As zorro said many of us here were very active.

Mine was different from what you shared it came on very quickly. Within in a month I had it full body except the left side of my face.

I don't believe problems in your C spine would cause you to have nerve issues in your feet.
Unfortunately, doctors will run many tests to rule out a lot of things.

One thing you said sounds familiar to me. My complaints of itching was what clued my neuro to look for small fiber neuropathy.

Do you have burning pain in the areas of your feet that u mentioned? That is what mine feels like. My neuro did all the EMG tests and nerve studies but found the answer with a skin biopsy.

The most important thing is to keep pressing your neuro. The sooner you get treatment for neuropathy usually the better the results.

Good luck to you. Everyone here realizes how freighting this is for you.

Come back with any questions you may have. Their are many people here with a wealth of knowledge.

Hopeful

It's been almost a month since I posted here and I have more questions.

Is it the norm for symptoms - numbness and small pains - to go away, or almost and then come back a day or two later? I had this happen to me last weekend while camping with my family and friends. Wondering if it was do to being in a better place mentally and having fun or ?

Do you find that there are things that make the symptoms better or worse?

So it seems the symptoms are very gradually getting worse - more numbness on the bottom and sides of feet and some pain. Do most people have it developing so slowly? I have a little bit of stuff going on with my hands but very little for now.

Have any of you gotten better and or completely healed from this?

I'm wondering were the symptoms will stop at - just feet or ??

I started taking Gabapentin 100 mg and now taking 400 at night a 1-2 during the day. Haven't seen any effects - good or bad. I understand this is a good drug ? What are your thoughts?

I have a Dr friend of mine say she has seen MANY cases of PN and her best guess for me was it may be Alcohol related, even though i don't drink that much - a few beers during week and I will have more if at a dinner party or function. She said some peoples systems get sensitive to the alcohol and may have PN from just a small amount? Man I could really use a good drink with this crap ( LOL ) but I am staying away from even one beer or glass of wine.

Thanks
Dan

My symptoms have also been very slow and gradual. They have their own periodicity too - I have weeks where i feel great, then WHAM, the symptoms come back. This seems to be closely tied to my stress levels and my sleep patterns. As for the progression, it's very hard to say. I think the general tendency is that if the cause of the PN is overlooked/missed and not treated, it will progress. Be sure to have your vitamin levels checked -b12, e, etc

Thanks

I have had extensive blood- urine work done by my Nuro.

Everything is good.

I had shoulder surgery 6 months ago and that when some of the symptoms started - nerve issues in my wrists.

My feet started having issues about 2 months ago. The Nero has no idea why the PN started - feet first.

As I said before my neuropathy came on very quickly with no known cause. It also progressed really quickly. My neuro told me he has never had a patient that it progressed so quickly on. Lucky me haha!!

It sounds like yours is slower moving. Hopefully, it will stay that way. I have seen just a few reports on here that say nerves can be healed. Who knows, it's something to hope for!

In the mean time there are some very supportive and knowledgeable people on this site. Many of the supplements etc have helped me a lot. You may want to give them a try. I just make sure I make my doctor aware I am taking them.

KTMAN:

I had a couple of numb toes, then itching pricking, sometimes all over, some days but not all.

This is what kept that away for me... for 13 months.
https://www.google.com/#q=benfotiami...09015904079260
Benfotiamine, Life Extension brand, one to four per day.

Now it's not working anymore, so I was left to itching and pricking, sometimes all over - horrible isn't it? Surprise surprise - just found out that I have psoriatic arthritis - didn't know at all. When that started to get treated, surprise surprise, itching and pricking subsided. The rheumatologist asked for all "neurological symptoms" when they see you cause, guess what, surprise surprise... infectious types of arthritis, like what I have and rheumatoid, give neurological symptoms such as pricking and itching, tingling, yada yada the whole PN ball of wax. I only figured it out when one of my finger joints swelled up and I went and had it checked out, no referral, I did it on my own.

You should get checked out because you could have it before it shows up and you don't want your joints getting mis-shapen if you do. Joints in your toes, bones in your feet, all of those could be affected, not just hands.

Also I found out, although I had taken plenty of supplements before PN... I had to go back and figure out, one by one, if each and every supplement were adding to the tingling, pricking or other types of nerve pain.

I was relieved of a lot of foot tingling by stopping coconut oil and a lot of nerve pain by stopping fish oil. I have also found out I cannot take canola oil.

So, if you don't have an arthritis issue that you are unaware of - then you have to go back and check out everything health wise you are doing. Supplements or health foods that you have used all your life, well guess what, now they could be causing your grief.

I was riding my bike everyday when I was stuck.. and guess what, I am still riding my bike everyday. You will figure it out. Just make sure you check in here a lot because a lot of info you need will come from other sufferers. It just so happens that what works for one person, will not work for all. So you have to hear what helps a wide variety of ppl and be willing to try things.