Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Recommended Posts

Been a while since I've posted. Thought I'd give a follow up. I went a neurologist that specializes in POTS and dysautonomia. I've had the skin biopsy, EMG and now I had a battery or blood tests this week. After the EMG he said I definitely had neuropathy, so he sent me fort the test. Thyroid, 2 hour glucose tolerance with A1C, ESR, RF, Homocystine, Uric acid, Vitamin B-12, E, D, Methylmalonic Acid, ANA, Sjrogens, ACE and IgM, IgA and IgG. The only thing out of range was the ESR. It was 24. The others were in normal range or negative. In the last couple months, I've started to get joint pain in my hands, wrists and shoulders. especially the day after doing any kind of activity where I use my arms, sometimes my hands hurt so bad just trying to close them like a fist. If I don't work with them, in a few days it's better, but still sore.  I am tired a lot too, even if I sleep 6-7 hours and I do use a CPAP, It's almost like when I didn't use a CPAP. The tachycardia stopped about a month and half after I had cervical fusion. but the malaise, occasional brain fog, binocular diplopia and now the joint symptoms remain. I haven't had a follow up since as the blood test results came back Thursday. I don't know what the deal is. Still think it could be PMR, PNS or MS. Thanks for listening. I know my symptoms pale in comparison to others and I probably function a bit better. I almost feel ashamed to vent here. It amazed me how folks here soldier on when they have much worse conditions. I don't know how they do it. I'll let you know where I am going from here. 

Share this post


Link to post
Share on other sites

Hi @JimL - I have been experiencing joint pains since onset of POTS in 2009. and I also have trouble with my hands, especially in the morning Recently I saw a rheumatologist and he did most of the tests that you just did and - voila, all is normal except for the ESR, that was elevated. I have not seen him for a follow-up but thankfully this means it is not autoimmune related. The fatigue you describe sounds like dysautonomia type fatigue to me, I have it too, some days worse than others. Since your Vit B12 and D were normal it would not be that. How about iron - did they check your ferritin? --- I hope you will get some answers at your follow up and I hope you will be better soon! Hang in there! 

 

Share this post


Link to post
Share on other sites

Have you looked into fibromyalgia or chronic fatigue syndrome? These can be causes of fatigue and joint pain. 

Share this post


Link to post
Share on other sites
47 minutes ago, Clb75 said:

Have you looked into fibromyalgia or chronic fatigue syndrome? These can be causes of fatigue and joint pain. 

It’s crossed my mind, but I don’t know much about it and the doctors never bring it up, but I’ve gotten looks just bringing up the other stuff. If it doesn’t show up on a complete metabolic profile or CBC, they don’t get curious or worried. This whole process has readjusted my thinking on the medical profession. It’s a small percentage of doctors that are competent, caring and curious. 

Share this post


Link to post
Share on other sites
3 hours ago, Pistol said:

Hi @JimL - I have been experiencing joint pains since onset of POTS in 2009. and I also have trouble with my hands, especially in the morning Recently I saw a rheumatologist and he did most of the tests that you just did and - voila, all is normal except for the ESR, that was elevated. I have not seen him for a follow-up but thankfully this means it is not autoimmune related. The fatigue you describe sounds like dysautonomia type fatigue to me, I have it too, some days worse than others. Since your Vit B12 and D were normal it would not be that. How about iron - did they check your ferritin? --- I hope you will get some answers at your follow up and I hope you will be better soon! Hang in there! 

 

Thanks Pistol. Sometimes I feel like I’m searching for a black cat in a dark room who isn’t there. They didn’t check for iron, but I did a CBC and complete metabolic profile last month and all was normal. 

Share this post


Link to post
Share on other sites

Thanks for the update Jim, it is always interesting to learn about others' experiences & compare notes.

Raised ES R  & joint pain, especially large joints like shoulders suggests PMR, but that wouldn't explain an abnormal EMG.

Do you have follow up? It may be worth discussing an empirical trial of steroid treatment to see if you responded.

B xxx

Share this post


Link to post
Share on other sites

Really? Your ANA was normal? I have known people like this who have mildly elevated ANA, but not clinically considered elevated, and no spatter pattern, so they called it 'normal' when it was really Undifferentiated Connective Tissue Disease. 

What you are describing sounds autoimmune to me. Hang in there. It took me 10 years and 3 Rheumatologist to get a diagnosis and my diagnosis is still evolving. 

Share this post


Link to post
Share on other sites
6 minutes ago, KiminOrlando said:

Really? Your ANA was normal? I have known people like this who have mildly elevated ANA, but not clinically considered elevated, and no spatter pattern, so they called it 'normal' when it was really Undifferentiated Connective Tissue Disease. 

What you are describing sounds autoimmune to me. Hang in there. It took me 10 years and 3 Rheumatologist to get a diagnosis and my diagnosis is still evolving. 

I can’t do this for 10 years. Well, maybe I can, but it’ll be miserable.

Share this post


Link to post
Share on other sites
1 hour ago, bombsh3ll said:

Thanks for the update Jim, it is always interesting to learn about others' experiences & compare notes.

Raised ES R  & joint pain, especially large joints like shoulders suggests PMR, but that wouldn't explain an abnormal EMG.

Do you have follow up? It may be worth discussing an empirical trial of steroid treatment to see if you responded.

B xxx

I have to contact them, which I will this week. I’ve had cervical fusion 2x and lumbar fusion once, so who knows RE  neuropathy.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...