doctorguest

"Serious" would mean the following: increasing pain, swelling, redness and heat; spreading of those to the non-affected area of the leg; feeling feverish, chills, sweating, headache which would suggest systemic involvement - i.e. bacteremia. It's probably a good idea to go to the ER if your doctor doesn't return your call by the end of the day. Unlike with POTS, ER doctors are great at managing these type of problems . Hope you feel better!

Are you being treated with antibiotics? I hope so. In fact, many physicians would treat you with IV antibiotics if you have cellulitis that is not improving on oral antibiotics. I hope your doctors are taking this problem seriously and treating it aggressively. You would certainly not be over-reacting if you give your doctor a call now describing your current symptoms and asking a lot of questions. I think you actually would be wise to do so.

Shivering can be a manifestation of the autonomic dysfunction. There are medications - like Klonopin and Clonidine - that can help, and you should discuss this with your neurologist as you planned.

There is a distinct tilt table test pattern consistent with POTS or NCS that a competent physician specializing in autonomic disorders should be able to recognize. A superimposed anxiety or a panic attack should not affect the POTS diagnosis if interpreted by a knowledgeable specialist.

These symptoms are likely due to small fiber neuropathy, which I see you have listed in your signature. In addition, have your doctor checked your vitamin B12 level? Vitamin deficiency and abnormal thyroid function tests can be also associated with sensory disturbance.

Morgan, I don't think it's fair to isolate the neurologists as "the ones to blow you off". This may have been your experience because you may have predominantly neurological issues, but trust me when I say that some other specialists or primary care physicians may have the same attitude when it comes to a complicated patient that they either honestly don't know what to do about or have no time or interest to deal with. Neurologists are just like the rest of the specialists - no worse and no better at this type of attitude. As for the headache specialists, these are the neurologists who either have additional training in headache or have special interest in treating headaches. Any doctor or nurse practitioner can prescribe medications for headache - it is really not that complicated. However, there are difficult patients with headache or rare forms of headache that need to be referred to a headache specialist for additional expertise. It's just like with diabetes - any primary physician should/could treat it, but complicated cases should be handled by an endocrinologist.

Your neurologist is pathetic, if you ask me. You don't abandon the patient just because you ran out of ideas - you refer the patient to someone who is more knowledgeable than you, be it in another town or another state. Sorry, harsh words for your doctor, but this is unacceptable. I would suggest calling the doctor's office and expressing "the outrage", after which asking for a referral to someone who does know how to help and is willing to work with you.

Michelle, I am happy to see that magnesium and riboflavin are working for you. These have been studied in "regular" migraine, not the hemiplegic type, so there is no evidence one way or another of their role in hemiplegic migraine. There are medications that help control hemiplegic migraine attacks, and I am sure the neurologist will discuss these with you and your daughter. It's reassuring that the results of the MRI and EEG were not abnormal. Good luck!

What type of doctor did these tests, and what lab were these sent to? Also, what was the reason you had to be tested for this?

Sensitivity to light in autonomic disorders can be caused by several mechanisms: pupillary dysfunction, whereas the pupils do not constrict correctly in response to light; migrainous phenomenon, where bright/flashing lights activate pathways to induce migraine in headache-prone people, and central overstimulation causes - meaning that parts of the brain that interpret light and visual stimuli are "hypersensitive". While we have direct evidence (studies) for the first two mechanisms, the last one is more of a hypothesis, at least for now .

Hi Flop, It's good to hear that your appointment went well and that this doctor confirmed what you intuitively felt all along with respect to your treatment, like continuing with salt and fluids and using the wheelchair prn. I hope you're keeping up with your job!

The most complicated aspect of treating dysautonomia - not unlike with some other disorders - is what we call "an individualized approach". Learning what works for you, which may not work for someone else with dysautonomia, is the key to managing symptoms and feeling better. While I obviously don't advocate skipping medications or not getting enough fluids, I want to reassure you that if you enjoy taking a hot bath, without getting so sick that you pass out or come close to it, you should keep doing it without reservations. The same can be said regarding temperature control - keep it at where you feel most comfortable.

Ernie, have you been tested for this clotting disorder and have you been told that you have it? Just want to add that even in the disorders with the strongest chance of genetic transmission - i.e. autosomal dominant - there is a 50% chance of inheriting it. Thus, if you haven't been tested for it, there is still a good chance that you don't have the disorder that your brothers had. If I were your doctor, I would test you for all clotting disorders with all of the tests that we have available so that you could make "the right" decision with respect to Procrit, using the best evidence - i.e. the results of the clotting disorders tests. Maybe you can discuss this issue with your doctor. Good luck!

If you're in Ohio state, a good option would be to schedule an appointment with physicians at the University Hospital of Cleveland - see DINET physician list. Some other great centers for diagnosis include Vanderbilt, TN; Mayo Clinic, Rochester, MN, and Cleveland Clinic. Good luck!

Linda, I want to reinforce the fact that you CAN recover from this condition. At this point, it would have to involve a combination of medications that reduce anxiety and cognitive behavioral therapy as well as supportive therapy for you and your husband. I also want to point out, without offending you or others, that agoraphobia is almost always accompanied by a panic disorder, and both can result in substantial disability and impairment in quality of life, sometimes more than a medical condition. As Nina and others pointed out, one 'should' logically make a distinction between unfounded fears of a "healthy person" being afraid to, for example, have a seizure and an epileptic being afraid of the same thing. However, I can tell you that psychiatrists and psychologists DO NOT make this distinction and both cases get a diagnosis of phobia, with the distinction that a person with epilepsy would also appropriately receive a mention of the epilepsy in the "diagnosis/impression" section. In terms of relationship with POTS, clearly one can have both conditions - POTS and panic disorder with agoraphobia, as these are not mutually exclusive. The difficulty comes when assessing what symptoms/disability results from POTS and what results from a panic disorder. Some people have minimal POTS symptoms, yet may be more impaired than those with severe POTS because of the co-morbid panic disorder. Regardless, panic disorder/agoraphobia is a treatable condition and should always be treated when present. Linda, I suspect that if your panic disorder is treated, you will improve significantly in your other conditions and regain a much more functional life, but be prepared to invest time, effort and energy to work on your fears. I hope you are able to find supportive and compassionate physicians and psychologists who can guide you through this process. Good luck!

I have not read the entire article because it is not yet available, but from reviewing the abstract, the authors examined CFS patients WITH CHRONIC ABDOMINAL COMPLAINTS. It would be interesting to followup these findings with a study examining CFS patients WITHOUT chronic abdominal complaints in order to see if the same findings could be reproduced in this patient population. CFS is a complex disorder and probably consists of various forms of illnesses with different underlining causes, resulting in the common pathway of fatigue syndrome. I would not be surprised if future studies discover a viral cause or link for the autonomic disorders since so many patients have a post-viral onset.

Do you take a regular miltivitamin? If so, then it would be a source of vitamin B12, thus explaining an elevated level. Regardless, as your doctor said, having elevated, as opposed to decreased, levels of B12 or folate is not a problem.

Maggy, While I don't know the details of your situation, the fact that you recently discontinued taking beta-blocker may account for such blood pressure and heart rate variations while on Lyrica. I believe that moving and being more active after taking Lyrica is a possible cause of your increased heart rate and blood pressure, as well as a drop in blood pressure after the increased activity, rather than Lyrica itself. At this point, if you feel that Lyrica is helping you, I would not rush to stop taking it. Rather, you would have to discuss with your doctor how to adjust your vital signs after you take Lyrica and engage in more physical activity, whether by taking a small dose of a different type of beta-blocker or another medication, like Midodrine, for example. Good luck!

Nystagmus has many causes, including medication side effect. It is NOT caused by or associated with POTS or any other autonomic disorders. If this is a new finding for you, it may be wise to see a neuro-ophthalmologist.

It is encouraging that your have a few hours of improvement after taking Lyrica. You talk about dangerous side effects, but I am not sure what exactly you are referring to. What are your blood pressure and heart rate measurements before and after Lyrica?

Hi firewoman, I think that if you were to have problems with your kidneys, your doctor would have notified you about it. If your creatinine, BUN, electrolytes and urinalysis are normal, kidney disease is very unlikely. As for the vertical ridges on your nails or the sweaty palms, I would not put too much emphasis on either as these, in the context of normal blood tests, are not signs of kidney problems.

Try to find a physician who is willing to work with you regardless of his knowledge of POTS. Your blood pressure seems to fluctuate quite a bit, but that alone would not confirm or refute a diagnosis of the autonomic dysfunction. The fact that your blood pressure is not low may be a good thing because, given your other symptoms, you may respond well to a low dose of a beta blocker. In Europe, POTS may not be a familiar diagnosis, so try to ask doctors whether they are familiar with "neuroasthenia" or "vasovagal syndrome", which are different names used for the same class of disorders of the autonomic nervous system. Try not to worry that something sinister is going on - from what you wrote, it sounds that your routine cardiac workup didn't reveal anything malignant. Good luck!

A diagnosis of Pure Autonomic Failure can be made by a neurologist specializing in autonomic disorders ONLY after a battery of the autonomic tests. I hope you can get a referral to such a doctor, who can hopefully help your mother. Good luck!

It is concerning that you had no recollection of how you ended up at the hospital's parking lot as you must have driven yourself there, thankfully without an accident. EEG is the right test to investigate whether you have a seizure disorder. There is a rare type of seizure disorder that originates in a specific area of the brain that can cause autonomic symptoms as part of the seizure manifestation. Have you felt any sensations/feelings or premonition that something is about to happen when you left the house? Regarding low potassium, have you been given potassium supplements in the ER? You may need to take it on daily basis to avoid this in the future. Contrary to popular belief, eating a banana, drinking orange juice or any other food that's rich in potassium, will not correct an abnormally low potassium blood level. Good luck with your evaluation! I suggest not driving until you get more answers from your doctors.

Linda, it is strange that the words "autonomic failure" appear in the impression section. Sometimes they read the studies as "mild cardiovagal failure" or "cardiovagal failure", but usually not "autonomic failure" because "autonomic failure" means not only failure to sweat, but failure in other autonomic functions. What did the consultation report by the neurologist state? I would go with what your neurologist said to you or mentioned in their report, not what the report from the autonomic tests said. You're right that physicians/technicians should use consistent terminology so that this type of confusion is avoided. Good luck!