JimL

1 hour ago, Chuske said:

I often wonder if any neck postural issues can have some impact on POTS especially after seeing a video of a doctor who treats mild CCI with realignment and said even severe cases that surgery will ultimately fail in long term if patient doesn't correct posture.

Sure, but at 58 and my fusions, IDK. It is what it is. 

1 minute ago, TigerLily said:

I had such a headache I ended up in the ER throwing up in extreme pain. I have an issue with my arms going numb periodically but lately it been all the time. 

Doc says I have bilateral cervical radiculopathy and the spasm in my neck and shoulders is quite severe. 

Im wondering if this could be the root cause of my issues. I will be having a nerve conduction study at my neurologists office soon. 

My doc put me on gabapentin for now and I only took it once last night and this morning my muscles were cool to the touch and not spasming. I guess I did not realize how bad this has gotten. 

Maybe? Neck/skull issues can cause POTS symptoms, like chiari malformation or cervical cranial instability. I have had a lot of spine issues and last year I had C2-4 fused. Already had C4-6 fused as well as L4-5. A month after the C2-4, most of my POTS stuff went away. I still have occasional issues, but not as bad. 

Took Zoloft years ago and it made me non-reactive to anything. You could have hit me with a 2x4 and I wouldn't have cared. Lowered my libido a lot too and PE with that. I went off it after a year . Coming off it was interesting for a week or two. I've never heard of it used for low BP and high HR. 

I've had that happen, but not consistently. I've wondered if it's related to blood flow, meaning if blood pools in the lower extremities, maybe it's not where it should be in the head. 

For sleep at times

My experience is limited in that I went there for a specific problem to a neuro-ophthalmologist and it was a negative experience. I’d never go back to that department again for sure. I’ve read good things about other areas of Mayo. Not sure about Medicare. I have BCBS. I live a few miles away and I know that a lot of retirees from my town go there for GP stuff. 

Looks good

On 10/22/2019 at 4:01 AM, misseb said:

Hey Jim, just reaching out as I remember we had very similar eating profiles and struggles - getting more fatigued by food as the day went on and pretty much only eating oats. Fine eating breakfast but then crash as soon as I used to eat anything substantial again. 

Finally I've found the main trigger for my fatigue - grains and especially oats - the thing that I thought was my number one friend. I have been able to put fruit, vegetables, fish and almonds back in since I removed oats and all other grains three weeks ago. Feel the best I've felt for a few years. Going out in the evenings and everything now, where before I couldn't get past 8pm without sleeping. I was just hanging on to oats fearfully as it felt like I couldn't eat anything else.

What put me on to it was the SIBO pre test diet where I ate only 'safe' plain white rice and was so fatigued I couldn't stand up, and then I went on a trip to Beirut where I didn't have oats. My SIBO test is positive, maybe it's part of the cause.  Sharing in case this is of help. 

I don't know what it is. The tests at the neurologist came back normal except for a slightly elevated SED rate. I go through phases with this. It's not like I feel bad every second of the day and can't function, but it varies a bit during the day and sometimes over time. Stomach still feels off on one side, I still get brain fog at times. Skin is dry, still have double vision. I know they're missing something, I just don't know what it is. I had high hopes. Now I just feel like I am supposed to suffer. 

Not surprising at all. I had spine surgery 7 weeks before pots and have had 3 fusion surgeries since 2012. The pots surfaced about 7 weeks after my lumbar fusion where I had a CSF leak during surgery that they fixed. It was alleged that a bone spur caused it. I think it was iatrogenic. 

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.

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.

1 hour ago, Pistol said:

@bombsh3ll - what is PMR?

https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

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. 

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. 

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. 

My omron has to be 20 years old and it still works. I enter the info manually.

Check out a social media site called Nextdoor. You can connect to people that live near you for recommendations or advice. People ask for things like that all the time. 

I had blood tests for B vitamins and they were in the normal range. Stenosis, spurs, bad disks, the whole shebang. Still digging to china to figure this out. 

18 hours ago, Derek1987 said:

Sorry man. Not fair is it.

Life isn't fair. Never was, probably never will be. Choose well.

It hasn’t helped. My wife thinks most medical problems are psychosomatic. One of her brothers had appendicitis and her mom had to take a shower before taking him to the hospital. Their attitude is just get over it or yourself. Add that to the list of clueless doctors and I’m on my own.

3 hours ago, Pistol said:

@JimL - regarding the vasculitis: my M-I-L has autoimmune issues ( Sjogrens ) and lymphoma and was just diagnosed with this form of vasculitis: 

https://en.wikipedia.org/wiki/Henoch–Schönlein_purpura

It is caused by autoimmune process. I thought maybe this could be of interest to you?

The spots I have aren't that prolific. Some on the tops of my thighs and I set them on my right arm near the elbow. Funny thing about Sjogrens is that a coworker in my building has it. I have to wonder about the environment I work in. It's the school of life sciences at a university. It took her a while to figure it out, or a doctor. She went to Mayo eventually and they figured it out. She works half time now. Lymphoma would suck. That's scary. 

2 hours ago, Caty said:

Hi Jim!

Have you heard of Dr Afrin? He described MCAS. In his book he talks about how he frequently sees patients develop MCAS after a gastric band surgery.

Have you read his book? If you haven’t, please do get it. “Never bet against Occam” THe title  means: Multiple dx are more likely caused by one cause than many.

Best wishes!

Right now I am seeing a neurologist that specializes in POTS and Dysautonomia. It's been slow. I had one visit to go over my stuff, one visit for skin biopsies and one scheduled for EMG. Based on the results, he'll order certain blood tests and other tests. I am hopeful that Dr Levine can figure this out. I don't know why this is happening, why i would get X, but a few possibilities come to mind, with diplopia being the lynchpin. PMR/GCA, Sjogrens and PNS/Carcinoid top the list. Of course MG could do it too from a PNS standpoint with a thymoma. I suppose MCAS could cause some of my symptoms, but I don't think all. I've have a lot os stiffnesss in my hands, wrists and shoulders. Thing is, I've have skin issues that my PCP said could be vasculitis, sent me to a vascular doc, who didn't find anything other than venous insufficiency due to previous DVTs. PMR/GCA is a form of vasculitis and the thing is, some things can go subclinical, meaning they don't show up on tests all the time. Only 50-70% of people test positive for the basic test for MG. My ophthalmologist only ordered the basic test, which came back normal and stopped there. There are four other tests. It's rare people with MG pass all four. I just don't get the complacency. I feel like crap most of the time, I see varying degrees of double vision and get pain in hands, wrists, shoulders and sometimes hips. Anyway, that's about it. 

On 7/13/2019 at 12:15 PM, Chiara said:

Hello, I like to ask, if somebody has several vision problems too? In my case they vary from double vision to highly blurred to almost unrecognizable. The ophthalmologist says that everything is ok with the eyes. When I get an infusion, it' s much more better. ..Does anyone has an experience of what you can do to support the eyes?? 

I have binocular diplopia. Went an ophthalmologist and she confirmed it, but sent me to a neuro-ophthalmologist at mayo. That Dr was like, oh, you have 4th cranial nerve palsy and have had it for awhile. Go back to your regular ophthalmologist when it stabilizes. No curiosity as to why as I've never had eye problems in my life.  I still have it and it varies, but the only thing fairly consistent is if I look to either side, my vision separates. I’ll never go back there again.

My temps are almost always 96.8-97.1 every morning. To me, that's low. Since my most recent cervical fusion, my standing pulse has gotten better, but I still feel crappy, still have abdominal pain and discomfort and still have diplopia. My advice is find a doctor that knows about what we have. There is a list here of doctors across the world that deal with POTS and DA. It might be worth a try. Look at the top of the page under Physicians. 

I’m in a similar place now. Docs are missing something. I just started going to a neurologist that specializes in pots and dysautonomia. Hopefully he’ll get to the bottom of it.