Thanks for your support and email, my friends and family!
I am pretty isolated since i cannot drive at the moment. Ugh. Actually I have been home bound for a year now, and don't feel great in social situations since I have such low energy. Guests are mental overload. I did take some MS speed today ie Provigil, 50 mg, so I am awake and have half a brain.
I do know a lot, if not all, of my problem is stress/thyroid related. The high cortisol levels from steroids causes high levels of Reverse T3 and my ratio of t3/rt3 is around 6 and it should be 20 or higher. This means I am NOT getting active thyroid to my cells (T3) so my body is sort of shut down.
Hence the pain, fatigue, anxiety and stress, digestive issues. It loops. A cyclical problem that feeds on itself. I was working my way up on Cytomel (T3) to like 75 mcg a day which is what it takes to clear the RT3 from the cell receptors when they put me back on the danged steroids. Ugh I am back where I started on repairing my thyroid and have to start all over again.
Think of T3 as being nature's speed, or human gasoline. If I was typically hypothyroid, I would have a high TSH and need armour or other natural thyroid with both t4, the raw material, and t3 the active hormone to get un-hypo. I am fine TSH wise, have enough T4, but it is converting to the inactive form of Rt3 in my body, jamming up the cell receptors. It's like a clogged carburetor. Only therapy with straight T3 (and there is no natural alternative for this) over a long enough time, will clear the Rt3 from my cells. Like cleaning the carb with high grade carb cleaner. It sometimes takes more than onecleaning to get the gunk out. I know. I had an old motorcycle that had a gummed up carb and fuel system.
Not many endocrinologists even git this concept at all. They want to give you T4 (Synthroid) or Natural Thyroid like Armour, if you get lucky and can convince them to, just to get your test ranges in range. Then they say you are just fine and it cannot be your thyroid. Wrong!!!!!! We are NOT test ranges, we are people with problems. Thyroid is the key to metabolic problems.
Endos like to treat diabetics because there is a lot of money in diabetes and diabetes drugs, but no money in thyroid, because, after all, the drugs are generic now and are cheap as heck.
If a new doctor wanted to really do some good in the world, they would go rogue and be a sensitive, educated, savvy, thyroid guy or gal, listen to their patients and how they feel, blow off their artificial lab test ranges and ignore the TSH. And then really help people get well. They need to run saliva cortisol tests and T3/RT3 and do the ratios. There are people on the internet who GET it and help more folks get well than all the Endos in the world.
Fibromyalgia, as I have read, is mostly a thyroid problem. I agree, cause when I was doing well, thyroid wise, my fibro was almost a non issue. My guess is MS has a thyroid connection. Why because Joesph Wouk, LDN taker, writer of Google! LDN, son of Herman Wouk (Winds of War and War and Remembrance) has PPMS and uses LDN but added Dexedrine or other speed to his protocol and totally got well. Hmmmm. Makes one think that if speed helps MS then why would not natural speed, T3, Cytomel, help in the same fashion. My suspicion is that somehow he turned his body back on with the speed and keeps it there with the endorphins from the LDN. Hmmm. More research is needed here for sure.
I have to pursue the MS (Like that "Mess" by the way!) drugs and see where they lead me because I definitely have autoimmune issues, but I will pursue the thyroid on my own and either whip this bad pony, or die trying.
When I was in the hospital on Sunday, they were all so impressed that my pulse was 49 and my blood pressure 108/ 70 and my temp was below 98. I was like, good godfrey, that makes me half danged dead. They said well you must athletic. I said, well, I have MS, am a light smoker and can barely walk...My pulse should be around 90 and my BP high as a kite!
Nobody gets it. It's all thyroid related. My idle is really tuned too low The low body temperature shows this. Sheesh I run 97.6 when I need to run 98.4-6. Enzyme functions in the human body are designed to be optimized at 98.6. A degree below and stuff isn't happening in the body! And stuff ain't happening in my body!
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Another Day goes by
Its been a better day in some ways and worse in others. The Fibro is so much worse after the steroids but at least I am not as psycho today. My stomach is giving me fits and my eyes are wonky. Did manage to do a little bit of work, not much, before i got dizzy and had to lie back down.
Luckily the Neuro's PA called and we discussed the lab results from the blood work at the hospital and what all else I need to do. She told me to hang in there as they (Neuros) are discussing my case and trying to get me approved for IVIG treatments. Gosh I hope it helps as nothing so far has.
My good friend Deb came over today and really cheered me up. Since I cannot go out without getting dizzy its nice to have someone come over. Grannie came too, did some grocery shopping for me, and helped by doing some laundry. Phew! My family is safe, clean, and fed for another week or so.
Was a beautiful day today, so I got Grannie to walk to the mailbox with me. We walked to the neighbor's mailbox about 50 yards farther. I had my poles so I didn't tip over, but was really exhausted when I got back and had to soak my feet with the stim thing (rebuilder) for an hour or so. Warm water felt good. So I got about 10 minutes of exercise. How pathetic!!!!
I so want my life back.
Luckily the Neuro's PA called and we discussed the lab results from the blood work at the hospital and what all else I need to do. She told me to hang in there as they (Neuros) are discussing my case and trying to get me approved for IVIG treatments. Gosh I hope it helps as nothing so far has.
My good friend Deb came over today and really cheered me up. Since I cannot go out without getting dizzy its nice to have someone come over. Grannie came too, did some grocery shopping for me, and helped by doing some laundry. Phew! My family is safe, clean, and fed for another week or so.
Was a beautiful day today, so I got Grannie to walk to the mailbox with me. We walked to the neighbor's mailbox about 50 yards farther. I had my poles so I didn't tip over, but was really exhausted when I got back and had to soak my feet with the stim thing (rebuilder) for an hour or so. Warm water felt good. So I got about 10 minutes of exercise. How pathetic!!!!
I so want my life back.
Monday, October 26, 2009
My day in the ER
OH My life is not so good right now. I woke up shaking, dehydrated and sweating like a pig. I could not stand up for more than a few minutes without getting dizzy and nauseous. I called the Neurologist office and the doctor on call told me to go to the ER.
What a nightmare. What a total nightmare. We spent 6 hours there, with no help at all. Over the day I got more and more dehydrated and the doctor's solution was to give me more solumedrol and do some blood work. I declined the solumedrol of course. GAWD. I am on the step down pack and having trouble with it. Why would I need more of that???? During the day I got one glass of water and Dennis, bless his heart, got me a sandwich which I ate after the blood work. After all that time, I got no relief and came home and just crashed in my bed after Grannie came and helped me make some chicken soup with noodles.
Dennis went off to a meeting and Caity went to a church function.
I feel horrible. Anxious, scared, woozy, hungry and confused.
Today I have called the Neurologist office and am waiting for a call back. My hand are cramping so back I cannot pick up anything or hold a pen. Luckily I can type for a few minutes at a time.
This is so scary and so debilitating. I just want my life back or at least my brain back. I want to walk the hood and ride my motorcycle and participate in life again. I cannot get up for long and just shake and shake and shake.
What a nightmare. What a total nightmare. We spent 6 hours there, with no help at all. Over the day I got more and more dehydrated and the doctor's solution was to give me more solumedrol and do some blood work. I declined the solumedrol of course. GAWD. I am on the step down pack and having trouble with it. Why would I need more of that???? During the day I got one glass of water and Dennis, bless his heart, got me a sandwich which I ate after the blood work. After all that time, I got no relief and came home and just crashed in my bed after Grannie came and helped me make some chicken soup with noodles.
Dennis went off to a meeting and Caity went to a church function.
I feel horrible. Anxious, scared, woozy, hungry and confused.
Today I have called the Neurologist office and am waiting for a call back. My hand are cramping so back I cannot pick up anything or hold a pen. Luckily I can type for a few minutes at a time.
This is so scary and so debilitating. I just want my life back or at least my brain back. I want to walk the hood and ride my motorcycle and participate in life again. I cannot get up for long and just shake and shake and shake.
Saturday, October 24, 2009
Day after IVSM
OH ugh, how bad can one feel. My head is foggy, cannot recall my name. Didn't sleep well last night and was sad when the sun came up today. I am just sitting in my recliner suffering with a stomach ache today and trying to drink lots of fluid to flush the cortisone out of my system. I am pretty weak too.
Its a beautiful day outside so I sat out for 10 or 15 minutes and got my vitamin D. Crashing and burning though. Having crying jags and periods of breathlessness. I hope it clears up as I wean off on the Medrol pack.
No more steroids for me, I think.
Its a beautiful day outside so I sat out for 10 or 15 minutes and got my vitamin D. Crashing and burning though. Having crying jags and periods of breathlessness. I hope it clears up as I wean off on the Medrol pack.
No more steroids for me, I think.
Thursday, October 22, 2009
Day three of IVSM
Wow, yesterday was a great day. I have the second infusion and all went well. I felt clear headed, perky, pain free and got lots done. However when I woke up, my feet, ankles and lower legs were all swollen up. A steroid side effect. Ugh. Also I think I overdid it yesterday since I felt so much better. That is the kicker with MS. One feels good, overdoes, crashes. Sigh. I just want to get a grip.
Felt horrible most of the day, cold hot cold hot, tired, wired, tired, wired. All these are also steroid side effects. Luckily, I have not had to be restuck as my cannula is nicely embedded and holding up well. One more day, then its out.
After that I do a step down pack to wean off the steroids. Cannot just stop cold turkey. So I get another week of 'roid rage. I sure hope this helps, because its hell going through it.
I do love the new girls at the infusion center next to the Neurologists office. They are friendly, helpful and caring just like the whole staff at the Neuros. God bless them all. I was in and out of there in about 15 minutes with my little ball of Sol. :)
Now if the weather would break and give us clear skys and cold temps! We had about 5 inches of rain overnight last night and the sun didn't rise at daybreak as it was pouring. I did sleep better and woke up only once at 2 AM then slept until 8ish. I should have felt better but for the swollen ankles.
Felt horrible most of the day, cold hot cold hot, tired, wired, tired, wired. All these are also steroid side effects. Luckily, I have not had to be restuck as my cannula is nicely embedded and holding up well. One more day, then its out.
After that I do a step down pack to wean off the steroids. Cannot just stop cold turkey. So I get another week of 'roid rage. I sure hope this helps, because its hell going through it.
I do love the new girls at the infusion center next to the Neurologists office. They are friendly, helpful and caring just like the whole staff at the Neuros. God bless them all. I was in and out of there in about 15 minutes with my little ball of Sol. :)
Now if the weather would break and give us clear skys and cold temps! We had about 5 inches of rain overnight last night and the sun didn't rise at daybreak as it was pouring. I did sleep better and woke up only once at 2 AM then slept until 8ish. I should have felt better but for the swollen ankles.
Tuesday, October 20, 2009
Back on IVSM
Had my neurologist appt today at 11:10 and went over my options. Tia talked to me about my DMD options and suggested maybe Rebif or Tysabri or to my surprise, IVIG. I know a lot about the former two but got some info on IVIG. She seemed to think it works like an immune system reboot and work really really well.
Meanwhile after going over my laundry list of symptoms she didn't think I had gone over to SPMS but just never recovered from my previous relapse and need the steroids. Oh well, my eye definately was cloudy, indicating a re-flare of optic neuritis. I also went over antidepressants and will give Lexapro a try starting at 2.5 mg at night and see how I tolerate it then titrate the dose up to maybe 10 mg. Gosh I hope it helps my outlook. The pain has just gotten to be too much and I feel like I just don't have the energy to fight it anymore. Sigh. She also suggested upping the valium, especially if I wake up in the middle of the night, like around 4 AM and cannot go back to sleep. She basically laughed at my only taking 1.25 mg twice a day. :( I hate drugs, I sure do. I want off all of them, but that's not going to happen as I realize. So I want to be a happy MS'er at least not a depressed patient. I have lots of living to do, but dragging through each day is so stressful and difficult. I feel so guilty for not carrying my weight in the family. I do feel sad.
I will have blood tests next week on Monday then the new set of MRIs on Thursday. I guess I will be in the machine for 2 hours doing brain, cervical and thoracic or lumbar, I forget. I go back to the Neurologist on November 4th and meet with her and the PA to discuss my options.
I gave them the unused Copaxone I had in hopes it might help someone else who has to wait a long time to get their drug or who needs a free 20 days worth. Also showed Tia my keenfit walking poles as I thought they might benefit another patient with the "wobbles." They are cool for anyone though who wants a better workout when walking. Check them out at www.keenfit.com.
The weather is gorgeous. The owls hoot at night. The male is a huge fellow with a 4 foot wing span and stands about 24 inches tall or more. Rain is in the forecast again for Thursday. Blech!
I am going back to sleep!
At the top is a small picture of the owl's last crop of babies from our front pine tree.
Monday, October 19, 2009
More History - Neurologist #3
Sorry these posts are so out of order. Chock it up to either Fibro Fog or MS cognitive impairment, as I am not so sure which one is belting me over the head right now. LOL
I survived the Holiday's and healed up well from the mastectomy according to my wonderful surgeon. He told me to keep on doing my rehab and get those arms working so I would have full mobility and range of motion and I did and I do! Still kind of weak but improving over the Holidays. What was not improving was the neuropathy in my hands and general weakness in my legs.
I went to Neurologist number 3 in November and first thing she wanted to do was run a 3T MRI on my brain as the earlier ones were so bad, and of course put me on an antidepressant! ARRGGHH. If I hear that again I am going postal and rip someones head off.
I went up to Methodist Hospital and had the MRI. What a cool place and great tech people. It was so loud though. No wonder they gave me huge ear plugs.
While getting the results at my follow up appt with Neuro #3, she kind of shook her head and confirmed the transverse myelitis diagnosis and wanted to do a lumbar puncture for MS.
We set it up but I backed out after reading up on the procedure and that place we had scheduled at did NOT follow the recommended 4 hour laying flat on back post puncture protocol. Yikes, all I needed was to get a colossal headache and need a blood patch. So I canceled it and decided that after the Holidays I would try to get into the best Neurology clinic in our area and see what they had to say. I had lost faith in Neuro #3.
Meanwhile on the breast front (or lack of it!) I found that I could wear a regular bra and put in fiberf oam prostheses and look and feel like a normal human again. What a find. I ordered a few more of the bras from Title 9 and a couple of foam inserts from the Breast Cancer place and had my solution. I also found I could wear my 36D underwire bras and use bigger prostheses and look pretty sexy again with fancier clothes. This is all good. What is a pain is the hot flashes I get since I am officially menopausal after my surgery. Ugh. Will deal with that later. I do sweat a lot under my artificial breasts and its annoying as all get out especially with the hot flashes.
Meanwhile, I am still living on Gabapentin, Tramadol and Valium. My legs are starting to swell in the afternoon and I am tired and woozy all the time. And I hurt.
I survived the Holiday's and healed up well from the mastectomy according to my wonderful surgeon. He told me to keep on doing my rehab and get those arms working so I would have full mobility and range of motion and I did and I do! Still kind of weak but improving over the Holidays. What was not improving was the neuropathy in my hands and general weakness in my legs.
I went to Neurologist number 3 in November and first thing she wanted to do was run a 3T MRI on my brain as the earlier ones were so bad, and of course put me on an antidepressant! ARRGGHH. If I hear that again I am going postal and rip someones head off.
I went up to Methodist Hospital and had the MRI. What a cool place and great tech people. It was so loud though. No wonder they gave me huge ear plugs.
While getting the results at my follow up appt with Neuro #3, she kind of shook her head and confirmed the transverse myelitis diagnosis and wanted to do a lumbar puncture for MS.
We set it up but I backed out after reading up on the procedure and that place we had scheduled at did NOT follow the recommended 4 hour laying flat on back post puncture protocol. Yikes, all I needed was to get a colossal headache and need a blood patch. So I canceled it and decided that after the Holidays I would try to get into the best Neurology clinic in our area and see what they had to say. I had lost faith in Neuro #3.
Meanwhile on the breast front (or lack of it!) I found that I could wear a regular bra and put in fiberf oam prostheses and look and feel like a normal human again. What a find. I ordered a few more of the bras from Title 9 and a couple of foam inserts from the Breast Cancer place and had my solution. I also found I could wear my 36D underwire bras and use bigger prostheses and look pretty sexy again with fancier clothes. This is all good. What is a pain is the hot flashes I get since I am officially menopausal after my surgery. Ugh. Will deal with that later. I do sweat a lot under my artificial breasts and its annoying as all get out especially with the hot flashes.
Meanwhile, I am still living on Gabapentin, Tramadol and Valium. My legs are starting to swell in the afternoon and I am tired and woozy all the time. And I hurt.
Neurologist Appt tomorrow
I moved my Neuro appt up to tomorrow since I am having a rather rotten time of it lately. The fatigue is overwhelming and the lower back pain is excruciating. I seem to sleep half the morning then cry for a while and then pull myself together and try to do some stuff in the afternoon. Gosh I hope the snake venom stuff gets here this week!. Cobroxin. Its new and it seems to be just an amazing pain killer!
I am working on my thyroid and adrenal glands, both of which are not being well behaved. I think the solumedrol drip used up the last of the cortisol I was making and left me not only with no stress coping skills but with a really high reverse T3 level. I did my own blood tests this past few months and am treating with replacement doses of hydrocortisone and cytomel. I should be able to clear the Rt3 (a huge fibro problem) in about 12 weeks which should reset my thyroid. I will take the cortisol for a few months too until I build up reserves and then wean off slowly in hope my adrenal glands will pick up the slack and go back to normal. Right now even the slightest though of stress causes me to get all shaky inside and pour out a huge surge of adrenaline.
I will ask the Neuro for some help with the emotional lability, gastrointestinal issues, sleep problems and pain. We will probably go over other choices for DMDs. I am very tempted to discuss Tysabri (gasp) even though the side effects are horrendous (PML). The people it has worked for have done really well at getting some function back and it does have double the efficay of the other DMDs like Betaseron, Rebif and Avonex. It is a once a month infusion at the infusion center and my Doctor is cleared for the touch program and has an infusion center right next to her office. Also Fampridine, (4-AP) is almost ready to hit the market and I want to be first in line to give it a try to get some walking ability back. It has a good safety record at low doses and folks have gotten mobility back and swear by it.
Also might get into stem cell transplant stuff by mentioning the Israeli project. But after dealing with breast cancer, I am not so sure I would be a candidate for it. I would like to do this after they get the hospital in Tel Aviv certified to infuse the stem cells back into the spinal cord as I have read horror stories about the hospital in Athens and don't think I would like to travel to turkey either. Not unless I was healthy of course and on a vacation!
Then there is the depression. Some days I am better than others, but if I miss a good night sleep I am wiped out for 2-3 days and unable to walk, think or otherwise function at all.
I am working on my thyroid and adrenal glands, both of which are not being well behaved. I think the solumedrol drip used up the last of the cortisol I was making and left me not only with no stress coping skills but with a really high reverse T3 level. I did my own blood tests this past few months and am treating with replacement doses of hydrocortisone and cytomel. I should be able to clear the Rt3 (a huge fibro problem) in about 12 weeks which should reset my thyroid. I will take the cortisol for a few months too until I build up reserves and then wean off slowly in hope my adrenal glands will pick up the slack and go back to normal. Right now even the slightest though of stress causes me to get all shaky inside and pour out a huge surge of adrenaline.
I will ask the Neuro for some help with the emotional lability, gastrointestinal issues, sleep problems and pain. We will probably go over other choices for DMDs. I am very tempted to discuss Tysabri (gasp) even though the side effects are horrendous (PML). The people it has worked for have done really well at getting some function back and it does have double the efficay of the other DMDs like Betaseron, Rebif and Avonex. It is a once a month infusion at the infusion center and my Doctor is cleared for the touch program and has an infusion center right next to her office. Also Fampridine, (4-AP) is almost ready to hit the market and I want to be first in line to give it a try to get some walking ability back. It has a good safety record at low doses and folks have gotten mobility back and swear by it.
Also might get into stem cell transplant stuff by mentioning the Israeli project. But after dealing with breast cancer, I am not so sure I would be a candidate for it. I would like to do this after they get the hospital in Tel Aviv certified to infuse the stem cells back into the spinal cord as I have read horror stories about the hospital in Athens and don't think I would like to travel to turkey either. Not unless I was healthy of course and on a vacation!
Then there is the depression. Some days I am better than others, but if I miss a good night sleep I am wiped out for 2-3 days and unable to walk, think or otherwise function at all.
Sunday, October 11, 2009
Hell Day
It seems like I have a horrible day every weekend and its driving me nuts. Yesterday I was doing great and did a lot of household chores like packaging berries that Deb and I bought in bulk from Oregon. Cleaned files off the K5 onto a back up external drive and processed photos for the Tennis team. Had a great dinner of steak and baked potatoes. Headed off to sleep but woke up at 1:15 only to find my daughter had not returned from her outing with my car across town. Her curfew is 12:30. At 1;45 she shows up claiming getting lost but never called or texted or anything. I was frantic with worry. Nothing good happens after midnight. Luckily they got back just fine, but it ruined my sleep for the rest of the night. I woke up today with a terrible headache that nothing seems to touch.
I am so tired of gloomy dull days when it seems like the sun is non existent. It is a cold day and I cannot seem to warm up even with the warm thing and covered up with a blanket. I am taking cytomel building up but am only on 3 times a day of 3.25 mcgs. To get rid of Rt3 I need to build up to about 75 mcg over the next 5-6 weeks. I sure hope this avenue helps. Also taking Hydrocortisone to try and regulate my normal rhythm. At least put the skids on the bouncy adrenaline surges. Replacement dose is 25 mg day.
I should have posted this a while back but just finished up now. So the blog is officially a mess.
I am so tired of gloomy dull days when it seems like the sun is non existent. It is a cold day and I cannot seem to warm up even with the warm thing and covered up with a blanket. I am taking cytomel building up but am only on 3 times a day of 3.25 mcgs. To get rid of Rt3 I need to build up to about 75 mcg over the next 5-6 weeks. I sure hope this avenue helps. Also taking Hydrocortisone to try and regulate my normal rhythm. At least put the skids on the bouncy adrenaline surges. Replacement dose is 25 mg day.
I should have posted this a while back but just finished up now. So the blog is officially a mess.
Saturday, October 3, 2009
I should probably continue with my history but today I am pretty down. I had hypnosis on Thursday and felt good afterward but have not slept well for the last 4 or 5 nights and I am woozy, wobbly and very spastic today. I don't have a lot of pain though and feel like my anxiety levels are less. My eyesight is funky too. I hope I am not going down too fast.
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