I had an appointment on Thursday with the vein doctor (Dr. Gaede) who did the procedure on my leg. About 3 weeks ago, I had seen my primary doctor and I had told him about the procedure and how it didn't help...and I explained all that was going on. I told him that if the neurologist couldn't find anything and the vein procedure did not help, it had to be my meds. As an experiment, he told me to stop taking my blood pressure medication, Atenolol (but I'll continue taking the Valsartin). I've been doing so, but it hasn't helped. If anything, it's worse. After the appointment with my primary, I realized the Atenolol is the med with my diuretic built in. Without the diuretic, I'm retaining fluids, of course, and my legs are puffier than usual. But the problem persists.
I had hoped to get a prescription for a diuretic from my cardiologist, who I was supposed to see the first week of October. However, they canceled the appointment and rescheduled me for early December. Groan.
That left my appointment with the venous specialist doctor last Thursday. Last time I saw him, he was talking about me seeing a podiatrist (which never came about because he never sent a referral to my primary doctor. I tried to get his office person to get him to put the referral in, but she never spoke to him about it. instead, all she did was look at his notes and saw that he wanted the notes from the neurologist I had seen a while back. Grr. Grr. GRR. So frustrating.
So the podiatrist never happened.
However, when the vein doctor walked into the consultation room to see me, he was reading the findings of the nerve conduction test the neurologist had done on me.
"I see here that everything looks okay on the nerve conduction test Dr. Wolf had done on you in August," he said.
I stopped him right there and told him that had been done two or three years ago. He looked at the date and saw 2015. He was befuddled for a moment and asked how my leg was doing.
I told him it wasn't any better. If anything it was worse. I again explained what was going on with my feet, how it started and how it progressed.
"It started off with the sensation that there was a wadded up bit of sock under my left foot when I walked. Then it started on the other side. Then my feet were numb and now it is moving up my legs. I can't move my toes and..."
He stopped me right there. "You can't move your toes?"
I can move my big toes and the second toes, but that's really about it. He wanted to see so I took off a shoe and sock and showed him.
"That's a neurological thing," he said. "Dr. Wolf noted there was a diminished response with the peroneal nerve, but it was still within the normal limits, just low."
I had hoped to get a prescription for a diuretic from my cardiologist, who I was supposed to see the first week of October. However, they canceled the appointment and rescheduled me for early December. Groan.
That left my appointment with the venous specialist doctor last Thursday. Last time I saw him, he was talking about me seeing a podiatrist (which never came about because he never sent a referral to my primary doctor. I tried to get his office person to get him to put the referral in, but she never spoke to him about it. instead, all she did was look at his notes and saw that he wanted the notes from the neurologist I had seen a while back. Grr. Grr. GRR. So frustrating.
So the podiatrist never happened.
However, when the vein doctor walked into the consultation room to see me, he was reading the findings of the nerve conduction test the neurologist had done on me.
"I see here that everything looks okay on the nerve conduction test Dr. Wolf had done on you in August," he said.
I stopped him right there and told him that had been done two or three years ago. He looked at the date and saw 2015. He was befuddled for a moment and asked how my leg was doing.
I told him it wasn't any better. If anything it was worse. I again explained what was going on with my feet, how it started and how it progressed.
"It started off with the sensation that there was a wadded up bit of sock under my left foot when I walked. Then it started on the other side. Then my feet were numb and now it is moving up my legs. I can't move my toes and..."
He stopped me right there. "You can't move your toes?"
I can move my big toes and the second toes, but that's really about it. He wanted to see so I took off a shoe and sock and showed him.
"That's a neurological thing," he said. "Dr. Wolf noted there was a diminished response with the peroneal nerve, but it was still within the normal limits, just low."
Deciding that my problem was neurological and not a venous issue, he referred me back to my neurologist and basically washed his hands of me, telling me to come back only on an as-needed basis.
I looked up issues of the peroneal nerve ( click HERE to see one of the things I looked up). While the peroneal nerve seems to be the logical culprit, there are some things that do not add up. For instance, people with peroneal issues have broken their fibula and it affects one leg. I've never broken a fibula and this affects both legs and is moving up them. I've never had major trauma to my knees, never been in a tight leg cast, and I don't wear high boots. I'm not very thin (hardly), don't have any known autoimmune issues. Believe it or not, my alcohol; consumption is not that great and i do not have diabetes (YET! If this condition of mine isn't cured soon, I'll just get fatter and fatter from my inactivity and I'll become diabetic for sure).
Another source (click HERE to see it) talked about the biggest symptom of peroneal nerve injury being foot drop. I don't have foot drop. Be that as it may, it's time to be flung back to the neurologist to see what (if anything) he can find. It has to be neurological if it's not the veins or the meds.
A few hours after my appointment, the vein doctor's office person called me that they had spoken to Dr, Wolf (neurologist) and that another (painful) nerve conduction test would be scheduled and then an appointment with Dr. Wolf would follow. O' the joy.
I have not gotten a date for the test yet...but I'm not looking forward to it. It really is getting more difficult to function. I push myself, though. I HAVE to work and I want to go out and do/see/experience things. Not many people at work know of my leg/feet problems and, if they do know, they have no idea to what extent I am having trouble. I just went on a trip to the coast with my friend Christa for a few days (details on that coming soon). She knows about my feet and legs, but I tried my best not to show my difficulties, hiding them from her and everyone else. But, man... I was EXHAUSTED getting around. We would go someplace and then go back to the hotel and have like an hour break or something before meeting for dinner. She'd go swimming or something...and I'd just go to my room and SIT and REST up.
My mom has suggested several times that I might have to go out on disability permanently. While it sounds like a great idea not having to go to work any more, I dread that too. I dread the loss of my mobility and possibly being confined to a chair. I dread the loss of my ability to go off and explore and discover unhampered by any sort of assistance. I'm only 52. I shouldn't be having these problems yet. It makes me feel for my sister Sara all the more. She has a form of cerebral palsy, but has not let that stop her from pursuing a career, marrying and having a child. She has to fight daily to get from Point A to Point B. Little by little I have a feeling I may begin to know more of what she goes through. I'm no where near being in a wheelchair yet. However, it was only a few years ago I started having the "sock under the foot" sensation and look at how it has progressed from there. Yikes!
Hopefully Dr. Wolf (who is from Transylvania. YES, THE Transylvania in Romania. Ha! Really!) will figure out what is wrong with me and figure out a plan to stop it and reverse it.
Take care.
CHEERS!
For the next update, click HERE.
Comments