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Old 06-26-2011, 06:29 AM   #1
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Neuropathy perhaps?

I began having health issues in the spring of 2010 and it has been a rollercoaster of symptoms and tests.
My very first complaint was a pain in my lower jaw and swelling below the ear. I thought maybe I had TMJ, so I thought I would wait to see my Dentist at my next cleaning.
About a month before my appointment I began having severe headaches and nothing seemed to relieve the pain. Then, out of know where fatigue started setting in. I began napping when I came home from work.
My Dentist didn't believe it was TMJ, but suggested I see an ENT or an Oral Surgeon. I saw the ENT a few days later and he ordered a soft tissue MRI of my neck, along with standard blood work. Results were negative.
I then chose to see the Oral Surgeon. He reviewed my dental x-rays and assured me that TMJ did not exist, but still any answers.
Next, I experienced chest pains, which resulted in two visits to my local emergency room and Stress Tests to boot. Heart and gallbladder tests were negative. My white blood count was slightly off count.
I saw a Pulmonary Specialist. He sent me for pulmonary tests and a sleep study. Results...negative, on the pulmonary. Sleep Study, not so good.
Next I get a Family Doctor...more blood tests. Now, I have an elevated liver count and he sends me for an ultrasound of my liver and gall bladder. Something was noted on my liver, so I get to see a Gastroenterologist.
Dr Gastroenterologist thought I need a Colonoscopy and an Endoscopy for safe measure. Results...normal.
Meanwhile, I am beginning to have joint pain (toes, fingers and knees), trouble walking and moments of forgetfulness.
I decide I need a new family doctor. New doctor = more tests.
He looks at things like Vit D, ANA and other tests I had never really heard of before.
Results...Vit D deficiency and elevated ANA.
New referral, I get to see a Rheumatologist. This doctor discovers a Vit B12 deficiency and my Vit D is still low. He does more detailed tests for autoimmune disorders, x-rays of hands and feet. Results...negative. He prescribes a mild muscle relaxer and naproxen. (I've yet to see that these medications have helped me in any way)
I stress to this doctor my aches, pains, inability to walk at times and he decides to send me for physical therapy for my knees. I didnít recall any x-ray or MRI of my knees. I contacted my family doctor and asked for a second opinion. He sets me up with a second Rheumatologist.
By the time I see the second Rheumatologist I have a body rash. This doctor gives me hope; she reviewed all my test results and complaints. I now go for another round of specific autoimmune disorder test and x-rays of my knee.
Results...negative. I am told it looks as though I may have Psoriatic Arthritis and we can start treatments soon, am I getting closer or what? I follow-up with an MRI and a Dermatologist referral.
The Dermatologist administers a steroid shot for the rash/itching and believes I may have an allergic reaction to my medication. He also confirms I have psoriasis.
MRI results show a possible tear of cartilage. Now I get to go to an Orthopedic.
Dr Orthopedic tells me my knees are fine, but writes a prescription for physical therapy.
I return to my Rheumatologist to start my treatment plan. She stops midsentence of discussing my symptoms further and tells me she doesn't believe it is Psoriatic Arthritis, but maybe neuropathic. I am the told we would not be starting treatment and I would need to see a Neurologist (I understand the side effects to any treatment plan and I agree with my doctor). What a bad day, I had such hope walking into her office. I was upset, but not so much with the doctor, but with this whole autoimmune / neuropathic situation.
I have read many articles, medical findings and forums like this one over the past few months to better educate myself on autoimmune disorders, now I am beginning that journey all over with neuropathic disorders.
I appreciate those that had the patience to sit through such a long read, but I am just trying to relate with you on my issues. I am sure I left out other specific symptoms or testing, but this was a challenge in itself.
Accordng to my latest research, it make me lean towards Polyneuropathy, but we'll wait and see.

 
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Old 06-26-2011, 11:42 AM   #2
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Re: Neuropathy perhaps?

Hi Working Dad - Wow! Your persistence and research are wonderful. I wish you luck in your neurological search, and for the benefit of us all, do hope you post further on what you find. Only thoughts I had were you didn't mention any numbness, which I think accompanies neuropathies. Also, if your neurologist does EMG/NCV tests and they are negative, that doesn't exclude having small fiber neuropathy (SFN). Also, regarding your initial jaw swelling, I wonder if you were tested for Sjogren's. If you have a very dry mouth or dry eyes, you might think about that. Even though I tested negative for Sjogren's, I have all the symptoms along with my SFN, and my rheumatologist said the test isn't conclusive. Best of luck to you. - Ruby

 
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Old 07-09-2011, 08:03 PM   #3
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Re: Neuropathy perhaps?

Quote:
Originally Posted by Ruby8 View Post
Hi Working Dad - Wow! Your persistence and research are wonderful. I wish you luck in your neurological search, and for the benefit of us all, do hope you post further on what you find. Only thoughts I had were you didn't mention any numbness, which I think accompanies neuropathies. Also, if your neurologist does EMG/NCV tests and they are negative, that doesn't exclude having small fiber neuropathy (SFN). Also, regarding your initial jaw swelling, I wonder if you were tested for Sjogren's. If you have a very dry mouth or dry eyes, you might think about that. Even though I tested negative for Sjogren's, I have all the symptoms along with my SFN, and my rheumatologist said the test isn't conclusive. Best of luck to you. - Ruby
I have had numbness in my forearms, hands and fingers just recently. Also, I have started experiencing shooting pains throughout my face (predominantly cheek area).

I have an EMG scheduled in the next week.

I have not been tested for Sjogren's.

Thanks Ruby!

 
Old 07-14-2011, 03:06 PM   #4
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Re: Neuropathy perhaps?

WorkingDad, yours is truly a facinating post and not at all difficult to read because it's reasonable and to the point, and yes, WOW! What is stunning to me is that I came to my PN through a very similar process. At first no pain in my feet and loss of strength, no weakness or pain of any kind. (I do have a lot of it now.) MY PN started exactly like yours. I just started feeling tired in no dramatic way, especailly after a workout. I lost my abilty to recover and needed to nap, something I never did, after a workout. Consequently, I let it go until I started to lose the ability to swallow. Naturally that encouraged my neurologist to treat and she found the answer on the first choice. Plasma Transfers. I'm dx as having PN and my feet can get so painful I'm unable to walk. But the PT have changed all that, and yes I can now swallow. From the neck down, how ironic. Of course for me the cause of PN is an autoimmune disorder. That's not at all uncommon. Best of luck.

 
Old 07-15-2011, 06:08 PM   #5
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Re: Neuropathy perhaps?

Quote:
Originally Posted by awlright View Post
WorkingDad, yours is truly a facinating post and not at all difficult to read because it's reasonable and to the point, and yes, WOW! What is stunning to me is that I came to my PN through a very similar process. At first no pain in my feet and loss of strength, no weakness or pain of any kind. (I do have a lot of it now.) MY PN started exactly like yours. I just started feeling tired in no dramatic way, especailly after a workout. I lost my abilty to recover and needed to nap, something I never did, after a workout. Consequently, I let it go until I started to lose the ability to swallow. Naturally that encouraged my neurologist to treat and she found the answer on the first choice. Plasma Transfers. I'm dx as having PN and my feet can get so painful I'm unable to walk. But the PT have changed all that, and yes I can now swallow. From the neck down, how ironic. Of course for me the cause of PN is an autoimmune disorder. That's not at all uncommon. Best of luck.
It is overwhelming for me to read other post that are similar to mine, as far as the first symtons and that sort of thing.
I do have bouts of choking when swallowing. Is this similar to what you've experienced or is it something other? I would like to know.
I'll have to read up on the Plasma Transfers. I am clueless on this topic.
What helpful hints can you share on your day to day coping with your PN?

Take care and thanks for the response!

 
Old 07-15-2011, 10:40 PM   #6
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Re: Neuropathy perhaps?

Quote:
Originally Posted by WorkingDad View Post
It is overwhelming for me to read other post that are similar to mine, as far as the first symtons and that sort of thing.
I do have bouts of choking when swallowing. Is this similar to what you've experienced or is it something other? I would like to know.
I'll have to read up on the Plasma Transfers. I am clueless on this topic.
What helpful hints can you share on your day to day coping with your PN?

Take care and thanks for the response!
Yes WorkingDad I still have chocking problems. Swallowing never came completely on line as it used to be. I have to be careful not to eat without a large glass of water in front of me. As for the chocking it doesn't happen all the time but often enough to be a real drag. I also have severe constipation which I have never suffered from, and find that I must eat 5 small meals a day because my ability to digest food has also been impaired, and once again not every day, but I would say two days out of a week. Balance is another issue. Some days that's really bad and as the other symptoms other days it's much better. Weakness also comes and goes. As for pain, it can strike without warning any day, usually in my feet. But since using the PT (which I'll explain in detail in another post) the pain does not last and is not severe. However, three weeks after the PT it starts to build up and on a graph from 1-10 it's around 6 or 7 by the time I'm back for another treatment. Oh, yes, let me not forget. My blood pressure on certain days can also be very low, about 105 over 60 and I can experience a lot of PVCs as if my heart were being effected by the autoimmune disorder, as it can if the autonomic system is involved. My neurologist is still not clear on this. All the best, Awlright.

 
Old 07-17-2011, 07:40 AM   #7
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Re: Neuropathy perhaps?

I too thought I was crazy. I have choking problems and heart pounding issues that I've not experienced until the last couple of months. I've never thought it was related but will ask at my appt. tomorrow. Hopefully I'll here some answers. To all the best. We'll figure this all out and beat it!!
Tracy

 
Old 07-17-2011, 08:08 AM   #8
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Ruby8 HB UserRuby8 HB UserRuby8 HB UserRuby8 HB UserRuby8 HB UserRuby8 HB UserRuby8 HB User
Re: Neuropathy perhaps?

Regarding swallowing and choking problems, these can be symptoms of Sjogren's, a disease often associated with neuropathy. Even though I tested negative for Sjogren's, my rheumatologist said the test isn't conclusive, and my dry mouth and dry eyes are classic symptoms of the disease. It was rather funny that before I even knew I had SFN, I was asking friends whether different bread brands were drier than they used to be--I had to have water when out hiking to swallow each bite of a sandwhich. You may want to check out the symptoms of Sjogren's as some of you have mentioned other symptoms that may be related to Sjogren's. Best to all. - Ruby

 
Old 07-18-2011, 05:19 PM   #9
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Re: Neuropathy perhaps?

Quote:
Originally Posted by tbowles6 View Post
I too thought I was crazy. I have choking problems and heart pounding issues that I've not experienced until the last couple of months. I've never thought it was related but will ask at my appt. tomorrow. Hopefully I'll here some answers. To all the best. We'll figure this all out and beat it!!
Tracy
Thanks Tracy! We all need just one-more cheering us on!

 
Old 07-20-2011, 09:39 AM   #10
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Re: Neuropathy perhaps?

Quote:
Originally Posted by WorkingDad View Post
Thanks Tracy! We all need just one-more cheering us on!
No doubt...we must stick together.
J

 
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choking, neuropathy and knee pain, night sweats, polyneuropathy, vitamin deficiency



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