[ridehard2208]

Hey all, I have had Complex sleep apnea, Arthritis, and, PN for 30+ years now. Over the years the conditions got worse and symptoms increase. While in the Army in 1976 we got a swine flu shot I had a severe reaction (like the most severe case of the flu I’ve ever had), so in 1977 I asked to skip the shot and was told my mind and soul may still belong to me but my body belonged to Uncle Sam and to get my butt in line and get the shot again same reaction. In 1978 they discontinued the shot due to high incident rate of GBS. In basic training I separated my left shoulder and still completed the last two weeks of training with no time to let it heal proper. In 78 thru 80 I was stationed in Alaska 4/9th Inf. At FT. Wainwright where we had two months of summer and ten months of winter. A lot of my time was spent in the wilderness living in tents most times was -65 degrees outside and +38 in the tents which felt real warm considering. One field problem it dipped down to -88 degrees and with wind chill -125 I was on premier for a little over an hour and when I went in the tent to thaw it felt like all the bones in my body were exploding, I found out what the true meaning of bone cold was, believe me it was very painful. Even back at post we did physical training outside every day up to -45 degrees to include a five mile run; when we came back into the bldg. after the run we could see our breath due to our core temp. dropped so low. On one such run with poor visibility and icy roads a large truck came around a corner lost control and was sliding sideways toward our formation everybody was trying to get out of the way when my feet slid out from under me straight over my head and I came down on the base of my neck and left shoulder. The next day when I complained of back pain I was sent on sick call where a field medic checked my prostate and said he couldn’t find anything wrong, about a week later the pain got so unbearable I could barely walk so again I went on sick call to find the same medic on duty and did the same routine, and since he wasn’t buying me dinner or at least giving me a kiss I never went back, just learned to deal with the pain with massive amounts of ibuprofen and rest when I could. Now they finally found that excessive exposure to cold can cause PN among other problems. Upon getting out of the military I underwent an exit medical exam which they noted the left shoulder condition, the two knees condition, curved spine, shorter left leg and abnormal high arched both feet. Able and willing to continue employment and obtain other medical options even though I had service connected disability and could use VA medical, and save this benefit for those who really needed it. Year after year the conditions got worse and symptoms multiplied and I got medical attention time after time but I have moved and changed cities or states about every 3 yrs. and changed Drs. Also so keeping track of medical history was not easy to track as I really didn’t ask for or keep good medical records, until I finally settled down in Virginia where two of our children also settled. In 1998 I was having quite a few cases of Bronchitis one day my wife took me to the ER because I couldn’t walk 5 ft. without losing my breath the ER doctor did her tests said bad case of bronchitis and was going to send me home. My wife pleaded with her to check further because she had seen me with bad bronchitis before and this was different; the Dr. said she could run a blood gas check which she did. The Dr. later returned thanked my wife and admitted me to the Hosp. for three days due to 47mm oxygen count for the next four years my oxygen count remained from 47mm to 65mm and no reason ever found, in 2002 corrected itself and showed 95mm at rest and 105mm with exercise. Also in 2002 for four I went to every type of specialist known to man and my EMG & NCV showed mild polyneuropathy and was told to take some vitamin B. I then continued to function on my job of 24 years which required 10 to 12 hrs daily 95% on my feet at a very fast pace. Meanwhile the conditions worsen at a faster rate and symptoms continued to increase, while my performance didn’t. In 2008 I had a large bone spur removed from my left shoulder which popped into my rotator cuff and was cutting the cuff. Also another appt. with a neurologist that had me walk while he watched then told me it was all in my head, and an orthopedic surgeon who told me the same. After a month I asked my PCP to send me to another neurologist which he did and this time he had a little more of a understanding of PN asked me to take off my socks and shoes saw my high arches and immediately said I know you have PN so he did another EMG & NCV and confirmed 2002 DX, but also noted Tech error and excessive soft tissue making it hard to find landscapes, explaining the reason for no response from both sural nerves. Again take vitamin B and back to work, a lot of days my feet felt like all the bones in my feet were all broken and hurt so bad it brought tears to my eyes, and my legs felt like they weight 100lbs. each. Then some days my lower back hurt I couldn’t stand up straight and walked like an ape, still more Drs. But no help. In 2010 Jan. 22 I was going to work and had a car accident on icy roads tearing the meniscus in my left knee adding more pain to the list, it took until Mar. 17 to get repair surgery and I worked till the day before. After this surgery I still had pain and was taken for total knee replacement on Aug. 16 which he gave me a spinal block before the surgery so for a week after I felt very little to no pain so I was ahead of the recovery bar until it started to wear off then pain surged through my body again. The orthopedic surgeon kept only concerning himself with only the left knee and kept showing all attention to that only as a cause for pain, and kept giving me monthly notes for desk work only, which my company wouldn’t accept anything but a full work release. So over the next year the orthopedic Dr. kept doing monthly notes (even though he said I would never be able to return to my current job, oh he also charged me $20 Ea. Ins. Note each month $40.) and said he couldn’t approve anyone for permanent disability just for arthritis no matter how bad it was (who died and made him disability God). Then Jun. 30 2011 I was released from my job and lost my medical Ins. But still had my LTD that was 45% of my income still better than zero. My other lucky break in a way that others didn’t have was the VA for medical concerns, which I started two months before I lost my job, which turned out to be the thing I needed in my life. When you are accepted in the VA medical program they give you a medical team who are the same team you see every time, and they did a full medical work up on me which orthopedic was a part of it, they did blood tests a EMG & NCV. A week later I went to get the results and was told I had severe nerve damage in both legs and both sural nerves were dead. I heard him but really didn’t understand, but due to other worries like might lose my LTD income my house and car (the house isn’t the biggest or the fanciest on the block but is our home and took us until the 50’s till we could achieve this American dream due to my wife’s bout with stage 3 Hodgkin about 17 years earlier) and my pain level was about an 7.5 and I was trying hard to remember to ask for a work note for the LTD and other policy that held off a payment for up to two years. When I asked for the note he said he would type it up on letter head and mail it to me, the next week as promised it came in the mail when my wife and I read it our jaws dropped to the floor (it read in his opinion I was unable to maintain gainful employment and was permanently/totally disabled). This was not good news by any means but did slap me in the face and make me come to terms with how serious my condition really was. Then after reading PN info, forums, and some personal stories even though I’m an old dog who has had these conditions for a long time I need to learn some new tricks from people who have experience with treatments and meds for a better quality of life. Any and all ideas, suggestions, and opinions welcome. Many thanks!

[zorro1]

You sure its not your prostrate?
What a great story especially being stationed in Alaska sounds like you've had a very productive life even though you have multiple disorders, very inspiring indeed.
What meds are you taking now for P/N pain?

by the way i also have sleep apnea and cpap though not central, there isnt much info about sleep apnea causing P/N but one would imagine a low or dangerously low amount of oxygen in the blood would effect the nerves in some way.

[mrsD]

Welcome to NeuroTalk:

I am finding it difficult to read your post, with no paragraphs, or spacing. Hard on my old eyes.

But I do see you have had foot pain for many years.
Whether the vaccines triggered this or not is hard to say. Also exposure to extreme cold, could affect the nerves. But over time, they may regenerate. During the regeneration they may send pain signals.

Can you tell us here, what you take in the way of drugs daily and supplements. I see a brief comment about Vit B... Can you provide more details on that?
Have you been tested for B12 and Vit D? Low Vit D leads to poor immune resistance to viral and other infections. The chronic bronchitis suggests, some nutrient deficiencies.

Have you had thyroid evaluations? Are your hands involved, or only your feet?

There have been some posters here in the past who have increased PN symptoms after joint replacements. This may have an autoimmune component, and be difficult to treat.

Have you been tested for Charot Marie Tooth? This hereditary PN is evaluated by DNA testing.

I really don't see how when you were in the army, examination of the prostate was done when you had shoulder pain? It sounds funny... but when my husband broke his foot in the army they made him trek on it anyway for over a day! When he finally went to sick call..he had to stand in line for hours...finally two orderlies came and carried him off. They couldn't even get his boot off.(it was so swollen he couldn't wear boots for along time after!) He really started to hate the army then! (not that he liked being drafted to Vietnam at all in the first place). But still they would not discharge him, and gave him a desk position instead.

edit to add... hubby says they didn't check HIS prostate when he had his broken foot...they even Xrayed it!
But he thinks that prostate exam may be a way to discourage malingering at sick calls..which is pretty common. Most guys would avoid the finger you know where, unless they were really having some issue he thinks.

[daniella]

Have you had an mri of your brain and spine? Also I remember Mrs D stating I think about being sick and it causing nerve condition? I picked up on that because I had pneumonia a few times. I could be off in a little bit of what Mrs D was stating so sorry. Since you mentioned being sick with bronchitis and needing to go to the er why I thought of it. Also have you been tested for auto immune conditions?
Sorry if I repeated what you had stated already. I also had a hard time following the post. I have bad eyes too.

[mrsD]

Yes, lots of infections? Perhaps Cipro or Levaquin or Avelox?
Known nerve damage from these antibiotics.

[ridehard2208]

Originally Posted by zorrro13

You sure its not your prostrate?
What a great story especially being stationed in Alaska sounds like you've had a very productive life even though you have multiple disorders, very inspiring indeed.
What meds are you taking now for P/N pain?

by the way i also have sleep apnea and cpap though not central, there isnt much info about sleep apnea causing P/N but one would imagine a low or dangerously low amount of oxygen in the blood would effect the nerves in some way.

Hey zorrro13, sorry for the rant of my life but I was trying to give a full account of all of my memories that I felt might be a causing effect. 1st I have been on bi-pap for 15 years now the obstructive part is my tongue is large and they had talked about reduceing it a few times but I not too sure about that.

2nd the meds I take is Tramadol 200mg a day, Gabapentin now 1800mg a day and climbing, Diflunisal 1000mg a day for imflammation, a Depression med, and sudafed.

3. the low blood oxygen can cause PN from something I read and for 4 yrs. recorded at least mine was 47mm to 65mm which s/b around 100mm. there was the effect of this before being found and from time to time now I know it is still.

Thanks again !

[ridehard2208]

Originally Posted by mrsD

Welcome to NeuroTalk:

I am finding it difficult to read your post, with no paragraphs, or spacing. Hard on my old eyes.

But I do see you have had foot pain for many years.
Whether the vaccines triggered this or not is hard to say. Also exposure to extreme cold, could affect the nerves. But over time, they may regenerate. During the regeneration they may send pain signals.

Can you tell us here, what you take in the way of drugs daily and supplements. I see a brief comment about Vit B... Can you provide more details on that?
Have you been tested for B12 and Vit D? Low Vit D leads to poor immune resistance to viral and other infections. The chronic bronchitis suggests, some nutrient deficiencies.

Have you had thyroid evaluations? Are your hands involved, or only your feet?

There have been some posters here in the past who have increased PN symptoms after joint replacements. This may have an autoimmune component, and be difficult to treat.

Have you been tested for Charot Marie Tooth? This hereditary PN is evaluated by DNA testing.

I really don't see how when you were in the army, examination of the prostate was done when you had shoulder pain? It sounds funny... but when my husband broke his foot in the army they made him trek on it anyway for over a day! When he finally went to sick call..he had to stand in line for hours...finally two orderlies came and carried him off. They couldn't even get his boot off.(it was so swollen he couldn't wear boots for along time after!) He really started to hate the army then! (not that he liked being drafted to Vietnam at all in the first place). But still they would not discharge him, and gave him a desk position instead.

edit to add... hubby says they didn't check HIS prostate when he had his broken foot...they even Xrayed it!
But he thinks that prostate exam may be a way to discourage malingering at sick calls..which is pretty common. Most guys would avoid the finger you know where, unless they were really having some issue he thinks.

Hey mrsD, Thank you for your response, 1st let me tell you I have read a lot of your post and replys and you never seem to disappoint and deliver good info and insight.


Sorry for the post my computer skills have gotten lacks due to not using for aabout 30 years and I also have a hard time reading it so thanks for helping me become more aware of that aspect of my quest for info and feedback most people will not read if too hard and I might miss valuable info.



The exam in the service where the medic kept checking my prostate was for lower back pain wihch could have been prostate but should have checked further with mri/x-rays etc.. which would have done if sent to Hosp. to see a Dr. which is next step. Also your husband is right I felt they were trying to discourage any from going on sick call cause they were a hard core Inf. unit but I did enjoy ny time there.

Finnally The four month I was out of work before the blood oxygen corrected it self I saw every specialist known to man and that took me as far as 100 miles away from where I live, they did every test for everything you can think of but CTM

Meds Tramadol 200mg a day, Gabapentin 1800mg and climbing a day, Diflunisal 1000mg a day for imflummion, a depression med, and sudafed


Sorry forgot about the foot pain yes every day since the 1st I had to wear Army boots which was 1976
From my reading the curved spine and high arches could point to hereditary, lost both parents at young age so???
The Swine flu shot cause GBS which meant it caused nerve damage so could be possiable cause.
The shoulder seperation in basic untreated, knees, back, and neck injurys which I had a profile for not to run over 1 mile, no bending or squating, which was ignored.


And I almost forgot the most important thing mrsD Thank your husband for his service to our Country, God Bless Him!!!
Again thanks!

[ridehard2208]

Originally Posted by daniella

Have you had an mri of your brain and spine? Also I remember Mrs D stating I think about being sick and it causing nerve condition? I picked up on that because I had pneumonia a few times. I could be off in a little bit of what Mrs D was stating so sorry. Since you mentioned being sick with bronchitis and needing to go to the er why I thought of it. Also have you been tested for auto immune conditions?
Sorry if I repeated what you had stated already. I also had a hard time following the post. I have bad eyes too.

Hey Daniella, Sorry for that crazy rant post it was the 8th time I tried to get it out and my thought process wasn't the greatest I ever had.

I even forgot my bout with pneumonia when the muppets creator Jimmy Henson died with the same strain I had. My wife had to come to my work and take me to ER and she told me I threatened the ER Dr. with a law suite if he wouldn't let me go home, then 24/7 my wife stsyed by my bed side wipeing my forehead with a cool cloth and making sure I got my meds. I don't remember that week at all

Also I've had several (about 6) MRI even a bone scan. I have never had a spinal tap as far as I can remember, but just thinking of mrsD's suggestion of hereditary even though my father died young I do know he had a shorter left leg like me.

again thanks for your ideas!

[Rosie33]

Your words, not mine, but I want to thank you personally for serving our country so we can be free, "Thank you, my friend, God Bless".

[daniella]

Originally Posted by ridehard2208

Hey Daniella, Sorry for that crazy rant post it was the 8th time I tried to get it out and my thought process wasn't the greatest I ever had.

I even forgot my bout with pneumonia when the muppets creator Jimmy Henson died with the same strain I had. My wife had to come to my work and take me to ER and she told me I threatened the ER Dr. with a law suite if he wouldn't let me go home, then 24/7 my wife stsyed by my bed side wipeing my forehead with a cool cloth and making sure I got my meds. I don't remember that week at all

Also I've had several (about 6) MRI even a bone scan. I have never had a spinal tap as far as I can remember, but just thinking of mrsD's suggestion of hereditary even though my father died young I do know he had a shorter left leg like me.

again thanks for your ideas!

No worries it is my eyes that have a hard time focusing. Have you been to a rheumatologist? Before I developed rsd and pn I was sick all the time. We are talking every other month for a few years with a fever. They could not figure out why. I still feel though no doctor of mine makes a connection that the constant sick issue and then developing PN and RSD at a young age have a connection. I am not saying your pneumonia and bronchitis caused the nerve condition etc but just some thoughts.
I agree with Rosie thank you and everyone on here or a family member that served or is serving.