jklass44 Posted March 24, 2019 Report Share Posted March 24, 2019 Hey everyone. Just looking to get some thoughts or opinions from those who have been (or have thought about going) to an autonomic clinic. My cardiologist has been kind of stumped with me lately and has now suggested twice that I go and see Dr. Raj out in Calgary (about a 10-12 hour drive from me). I know he was previous at Vanderbilt - has anyone seen him before? I guess I'm just wondering if it's worth going all that way when I've already technically been diagnosed. I think my cardio was just hoping to find out the cause of my POTS in order to treat it more effectively, as it seems a lot of my symptoms have been getting worse the past year and we've had to continually increase the doses of medications I'm taking - perhaps my body quickly gets used to it and begins to overcompensate again, I'm not sure. What usually happens during these appointments? How does testing differ at these centers compared to other specialists? Do they look at the bigger picture ie all of your symptoms or do they just focus on the cardiovascular aspect of things? Is this a quick in and out appointment or did you have to stay a few days, etc. Any opinions appreciated! Best wishes to all. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 24, 2019 Report Share Posted March 24, 2019 Dear @jklass44 - I have been to 2 autonomic clinics here in the US. The first one did extensive autonomic testing and a neurological exam but was not able to diagnose me, plus they do not follow their patients after diagnosis. The second autonomic clinic did testing, diagnosing and continuous management, they work with my local docs and give advice as well as see me on follow-up or as needed. Check with the Dr you will be seeing and ask if they treat the patients ongoing or just diagnose ( which you already have been ). Since you symptoms are getting worse on the current meds you are taking I would seek further help by an autonomic specialist. It was worth the long trips for me!!! I have found that my symptoms change over time and without the specialist's help my PCP and I would not know what to do when they flare. Regarding the time of the appointment: in my case the first appointments in both clinics were extensive ( 2 hours ) but subsequent follow-ups are 30 minutes long. Quote Link to comment Share on other sites More sharing options...
p8d Posted March 24, 2019 Report Share Posted March 24, 2019 I think it’s absolutely worth it. I almost inadvertently went to one near me 6 months after I became ill. I had no idea what was wrong. My neurologist had worked at Mayo so I was basically given the same tests to rule out everything else (24 tubes of blood) the first visit, had a thorough neuro exam, poor mans tilt and then a full day off further testing the next week including GI motility, TTT, QSART, EMG and other stuff that I can’t remember. They kept checking labs for years, especially for autoimmune disease given my presentation. They believed it was autoimmune and after 18 months one came up positive for UCTD. A few years later the Celltrend test also showed a positive for autoantibodies. These centers tend to stay up to date on the latest research and offer new therapies. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted March 24, 2019 Report Share Posted March 24, 2019 7 hours ago, p8d said: A few years later the Celltrend test also showed a positive for autoantibodies. I am interested in the Celltrend panel myself as I was only tested for AChR antibodies at the UK's only public autonomic center. Which of yours showed positive and what was the treatment offered if any & has it helped? B x Quote Link to comment Share on other sites More sharing options...
JimL Posted March 24, 2019 Report Share Posted March 24, 2019 22 minutes ago, bombsh3ll said: I am interested in the Celltrend panel myself as I was only tested for AChR antibodies at the UK's only public autonomic center. Which of yours showed positive and what was the treatment offered if any & has it helped? B x I had AChR in november and it was in the normal range. The reason was for my diplopia as she was testing for MG. Thing is, only 50-71% of people with MG test positive for AChR. I don't know what they do things so piecemeal. Never heard of Celltrend. Quote Link to comment Share on other sites More sharing options...
p8d Posted March 25, 2019 Report Share Posted March 25, 2019 @bombsh3llmy Anti a 1- adrenergic Antibodies test came up positive, everything else was negative but with my UCTD diagnosis as well my insurance company approved SCIG. I opted for SC rather than IVIG because of a history of migraine and after 5 months I am seeing some slight improvement in fatigue/pain/brainfog/malaise and I think some blood pooling. Nothing dramatic at all but every little bit helps. It’s not helping BP/HR yet and I still have days that are terrible, especially if I overdo it (for me that’s Dr/PT appointments). It took five weeks to hit the loading dose so the first real impact only started in January. I flared badly after the second shingles shot a few weeks ago. My neurologist said it will take years for the nerves to grow back because they grow so slowly but we are giving them the chance now. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 25, 2019 Report Share Posted March 25, 2019 Hi @p8d - 13 minutes ago, p8d said: It’s not helping BP/HR yet and I still have days that are terrible, especially if I overdo it (for me that’s Dr/PT appointments). - that is what goes on with me also. Church, Dr appointments, PT .. even dinner with neighbors is a major stressor and requires planning, energy conservation and then recovery afterwards. But since IV fluids I gladly take it b/c it is no longer accompanied by syncope or seizures!!! 16 minutes ago, p8d said: I flared badly after the second shingles shot a few weeks ago. 17 minutes ago, p8d said: My neurologist said it will take years for the nerves to grow back because they grow so slowly but we are giving them the chance now. I am not sure what you - or your neurologist - means by the nerves need to grow back. Does the shingles shot kill the nerves? I thought it prevents the virus from attacking the nerves? Quote Link to comment Share on other sites More sharing options...
p8d Posted March 25, 2019 Report Share Posted March 25, 2019 @Pistolshe’s talking about the peripheral nerves that are being attacked by the autoantibodies. In my case the a-1 adregenic autoantibodies are attacking the nerves that tell your peripheral blood vessels to constrict on being upright. At least that’s what I think it is. Nothing to do with the shingles shot, sorry to be unclear. When we discussed the blood pooling I said I think that it’s not going up my legs as far, we’re talking centimeters here, and she said it makes sense because the nerves demylate from the toes up the legs so if the nerves are re-growing they go the opposite way, from the central to peripheral and reach the toes last. Nerves regrow extremely slowly though. Is that clear as mud? Quote Link to comment Share on other sites More sharing options...
jklass44 Posted March 25, 2019 Author Report Share Posted March 25, 2019 On 3/24/2019 at 6:50 AM, p8d said: I think it’s absolutely worth it. I almost inadvertently went to one near me 6 months after I became ill. I had no idea what was wrong. My neurologist had worked at Mayo so I was basically given the same tests to rule out everything else (24 tubes of blood) the first visit, had a thorough neuro exam, poor mans tilt and then a full day off further testing the next week including GI motility, TTT, QSART, EMG and other stuff that I can’t remember. They kept checking labs for years, especially for autoimmune disease given my presentation. They believed it was autoimmune and after 18 months one came up positive for UCTD. A few years later the Celltrend test also showed a positive for autoantibodies. These centers tend to stay up to date on the latest research and offer new therapies. Do you remember why they ordered an EMG? Was it due to specific symptoms you had/have or just simply covering their bases to rule things out? I’ve never had any autoimmune testing done. Might be worth a look... Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 25, 2019 Report Share Posted March 25, 2019 59 minutes ago, p8d said: Is that clear as mud? Yes - I get it now, thank you. I was confused by the reference to the shingles shot. I hope you will improve with your symptoms. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 25, 2019 Report Share Posted March 25, 2019 1 hour ago, p8d said: @Pistolshe’s talking about the peripheral nerves that are being attacked by the autoantibodies. In my case the a-1 adregenic autoantibodies are attacking the nerves that tell your peripheral blood vessels to constrict on being upright. At least that’s what I think it is. Nothing to do with the shingles shot, sorry to be unclear. When we discussed the blood pooling I said I think that it’s not going up my legs as far, we’re talking centimeters here, and she said it makes sense because the nerves demylate from the toes up the legs so if the nerves are re-growing they go the opposite way, from the central to peripheral and reach the toes last. Nerves regrow extremely slowly though. Is that clear as mud? 1 hour ago, p8d said: @Pistolshe’s talking about the peripheral nerves that are being attacked by the autoantibodies. In my case the a-1 adregenic autoantibodies are attacking the nerves that tell your peripheral blood vessels to constrict on being upright. At least that’s what I think it is. Nothing to do with the shingles shot, sorry to be unclear. When we discussed the blood pooling I said I think that it’s not going up my legs as far, we’re talking centimeters here, and she said it makes sense because the nerves demylate from the toes up the legs so if the nerves are re-growing they go the opposite way, from the central to peripheral and reach the toes last. Nerves regrow extremely slowly though. Is that clear as mud? I think 1-2mm a day. Quote Link to comment Share on other sites More sharing options...
p8d Posted March 26, 2019 Report Share Posted March 26, 2019 @jklass44I think the EMG was to rule out something, possibly Parkinson’s but I am not sure about that. I think in cases where dys comes on post viral, suddenly, autoimmune diseases should be ruled out. Many such diseases are kicked off this way. In my case that’s exactly what happened and my maternal family, especially my mother, who has 4 autoimmune diseases. My mom’s started after a tick bite. I think a fair amount of the research is finding a link between dys and autoimmunity. @JimLI think it’s 1-2mm per month not day but I am not sure. It’s extremely slow whatever it is. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 26, 2019 Report Share Posted March 26, 2019 3 minutes ago, p8d said: @jklass44I think the EMG was to rule out something, possibly Parkinson’s but I am not sure about that. I think in cases where dys comes on post viral, suddenly, autoimmune diseases should be ruled out. Many such diseases are kicked off this way. In my case that’s exactly what happened and my maternal family, especially my mother, who has 4 autoimmune diseases. My mom’s started after a tick bite. I think a fair amount of the research is finding a link between dys and autoimmunity. @JimLI think it’s 1-2mm per month not day but I am not sure. It’s extremely slow whatever it is. It's Wikipedia, so YMMV as usual: https://en.wikipedia.org/wiki/Neuroregeneration Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted March 26, 2019 Report Share Posted March 26, 2019 P8d I'm glad you've found a helpful treatment and a good neurologist! I am considering the Celltrend tests but would have to pay not only for the tests but to get the blood centrifuged etc. Also if something did test positive I am not sure any doctor in the UK would be knowledgeable or willing enough to treat it. The reason UCLH offered to test my AChR antibodies was due to sudden onset, but mine was triggered by a forceful valsalva & I've nothing to suggest autoimmune disease. I do have dry eyes & mouth but Sjogren's has been ruled out by biopsy, & it is likely anyone with polyuria of 6l/day would have dry eyes & mouth! B x Quote Link to comment Share on other sites More sharing options...
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