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Cleveland Clinic


bethanyh
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I have seen a few posts about people going to Cleveland Clinic and was looking for some advice as well as what to expect.
I will be going in early July and they have set me up for an initial visit with an internal medicine doctor. They told me to plan on being there July 7-9 but right now my only scheduled appointment is on July 7 with internal medicine. Is this typical for a first appointment, that I will not see any specialists? I have filled out two questionnaires, both of which ask who else I want to see while I am there and I have asked for cardiology, GI, and neurology. I find it difficult to imagine seeing an internal med. doctor then being scheduled the very next day or two with specialists but is that how it works there??

Also, where I live the temperature has increased over the past two days and my BP has dropped from my normal range. Typically, I am in the mid to upper 90's/ mid 50's to low 60's and is now hovering in the 80's/low 50's. I have added even more liquids and salt but my BP numbers are not budging and I am symptomatic, not to the point of fainting but very much feeling like I am going to. Is this a typical symptom when the weather warms? Any suggestions?

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Don't know if this would helpful but you may need more potassium. Ask your doctor to check your potassium levels. My son has low blood pressures and summer time is the worse for him. I have to alternate water and G2. However, the Vitamin B water that is orange flavored is somewhat higher in potassium and has vitamins in it which might be helpful. It a little more expensive but it is very helpful when he is traveling. My son also takes thermotabs which is a buffered salt tablet that contains some potassium. My son takes 3 tablets 3-5 times a day. Three tablets is a little over one gram of salt. He always takes 3 tablets with his midodrine and the other dosages are midmorning and midafternoon. He takes Midodrine three times daily. The vitamin B water, I buy at Walmart. I don't know anything about the Cleveland Clinic but wish you the best and hope you get some more answers.

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Bethany,

So happy for you that you'll be going to Cleveland clinic! It's been so helpful for me.

Your itinerary sounds somewhat different than mine. My local doctor who was handling my pots referred me to the autonomic clinic, then Dr. J referred me to the various specialist's he recommended.

I hope you get the answers that you deserve and you can plan a path for recovery!

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Not sure about the internal medicine route. I live very close to the clinic. My neurologist there referred me to see Dr. jaeger as well. He set me up, I think, for further autonomic testing (I had already had POTS confirmed by a Tilt Table Test.). I had the Qsart, Valsalva and hemodynamics testing. Then, when my QSart was abnormal, I had a thermoregulatory Sweat Test. The neurologist that I saw there ran blood tests for Paraneoplastic causes as well as autoimmune antibodies and other tidbits such as vitamin deficiencies and some one ordered a skin biopsy (brain fog!). After all that, I was diagnosed with autonomic neuropathy (unknown cause) which is apparently causing the POTS. I am so grateful that I live so close and both Dr. Jaeger and Dr. Shields (neurology) have been very helpful. Right now, I am on an upswing so I wish you the same! Gods speed Bethanyh!

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Great to hear you're on an upswing Raisin! If you don't mind me asking, do you use any specific med to treat the autonomic neuropathy? I have a friend here in the Netherlands who has that same diagnosis and would like to help her improve (if possible of course)

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Sarah and Raisin: Thank you for the encouragement! I thought the internal medicine route was a little strange too. My POTS was confirmed with a Tilt Table and I have already had some autonomic testing performed: a Qsart, Valsalva Maneuver, and one other breathing test, which I was told by the doctor that I failed all three tests.

I filled out the two questionnaires that Cleveland sent to me, each asked what departments I would like to see and a physician name if possible. I responded with both Dr. Jaeger and Dr. Shields because I keep seeing their names come up and positive comments with both but unfortunately I will not be seeing either of them. I looked again at my itinerary and now I am scheduled twice with the internal medicine physician as well as Dr. Mohamed Kanj, EP Clinician and Dr. John Morren, Assessment for Neuromuscular. I don't know anything about either of these two doctors, can either of you shed any light? I am not doubting the ability of these doctors but at the same time I am tempted to call CC and ask if either Dr. Shields or Dr. Jaeger would be available when I visit instead of the physicians I have been scheduled with...

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Hi Corina. :). I think I am taking the usual meds for POTS such as Midodrine (10mg. Three times a day) and a beta blocker. I can't say where the upswing started. I think it has just been a SLOWWWWWW elevator going up. Of course, I know there are a lot of peeps that are up then down. Maybe I am in denial but I will take whatever I can get.

Bethany, I am going to look up those docs and see if I can shed some light for you. I know I had to make an appt. with Dr. Shields and his appt. schedule is going out til October currently. He is only working three days per week now which may complicate things.

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