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Started Midodrine This Am


Ctat333

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Glad to hear that the midodrine is helping. More testing today or do you get a break since it's the weekend?

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I am starting my urine testing for Morbus Wilson today, and they draw some more blood. Lots of other tests will continue on monday.

One neuro doc was in my room, telling me that the fact that midodrine makes me feel better doesn't point to any particular causes - just to the fact that more vasoconstriction is indeed helpful, but it wouldn't yet explain why I actually need it.

However, he also investigated my mottled legs (when I am standing) and seemed a little concerned. He took lots of photos of my legs and told me he had never seen my particular skin pattern. On monday, a team of 3 docs will again take a look at my legs.

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That's basically the only reason why my son is taking the midodrine. My son has the mottled legs just from sitting up in his wheel chair. Be sure to give us an update on that symptom from your doctors. With all the testing they are doing it should be interesting what shows up. BTW, are they checking for Lyme? Just wondered if that illness was something that occured where you live.

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A couple of docs has taken a look at my mottled legs today - and they all agree that the pattern is very untypical and they are not yet sure what it exactely stands for.

When I am standing, about 70% of my leg's skin is in a rather bright red tone. The rest appears totally normal in colour. However, the red area is interspersed with numerous very white areas, almost all of them in the shape of regular circles in the size of a large coin.

As it is clear to the docs that this whole picture is of course reflecting abnormalities in blood circulation under the skin, they want to find out what exactely is going on.

Btw, taking midodrine makes me actually feel better when I am upright (pulse rate is lower too!) but the mottled appearance of the legs doesn't go away at all!

I was already checked for Lyme twice (Elisa, Westernblot and Igenex) all negative both times, but they will check another time, I guess.

Does midodrine help your son? Which dose is he taking?

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My son takes 30 mg 3x daily with 1-3 grams of salt a day. Before this dosage, he was on 40mgs. His dosage will last about 4-5 hours before his blood pressure will start to sky dive downward. However there are times that I have to go ahead and give him a gram of salt before he is due for his next dosage. Our doctor wants us to space the dosage out to every 5 hours if possible. I can usually do this if I give a gram of salt inbetween the dosages. This is an unsual high dosage for a teenage boy. However, with the autoimmune antibodies that have be found in his body, our main goal is to get these things out. Autoimmune antibodies can cross over into the brain barrier and can cause problems anywhere in the body.

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This is in fact a rather high dosage - I hope your son benefits a lot from it?

Btw, was he ever tested for small fiber neuropathy? I have it (in a rather mild form) and it definitely seems to play an important role with my blood pooling.

All the best wishes to your son and you!!

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It's the only thing that does help. He has been tried on a few other medications but they will not keep his blood pressures up. He has had the QSART test at MAYO and it was negative. Our cardiologist does suspect neuropathy pain is a major problem but have not found a neurologist willing to do the biopsy for the other.

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It's the only thing that does help. He has been tried on a few other medications but they will not keep his blood pressures up. He has had the QSART test at MAYO and it was negative. Our cardiologist does suspect neuropathy pain is a major problem but have not found a neurologist willing to do the biopsy for the other.

My skin biopsy was done by a dermatologist, maybe you can find one easier? However, the Interpretation should best be done by a specialised neuropathologist, but I am sure, Mayo should have one...?? The biopsy can be made and then sent to another place, so you don't have to travel to the lab that finally looks at it!

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My son has been seen by a couple of neurologist since MAYO and no one was interested in doing this procedure. Our cardiologist has even referred my son to a neurolgist that he thought would do this procedure. The neurologist would not consider it because she thought my son's symptoms were due to anxiety. That's one of the problems that we ran into because of Tyler's age.

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Hm, that sounds rather complicated, to be honest... In fact, finding out whether your son has small fiber neuropathy or not won't yet fix the problem. But SFN is again in principle secondary, which means that an underlying cause can (and should) be found! And, most important, Pots can possibly fixed, if the underlying cause of the SFN is treatable, though it may take some time for the small fibers to recover.

Anyway, SFN is a very typical comorbidity of Pots. Most Pots patients don't have it because of the two main causes (diabetes and alcohol), but rather because of some sort of autoimmune condition. And that's where you already are concerning your research, as far as I understood. Therefore, finding out about the SFN and it's cause could contribute to completing the puzzle (?)

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