Aa
Hypothalamic dysfunction?
Hi! I would like to introduce myself by saying I have sort of defected over from the MS forum. It's a wonderful group of people over there, and should I end up with a CFS diagnosis, I'll stick with my friends there forever! I'm eager to meet you nice people, too!
I started having odd symptoms a few years ago, mostly migraines with no headache, vertigo, culminating in severe weakness in my limbs that resulted in periodic paralysis in my legs, bilaterally, "drop foot," more accurately. I've been very frustratingly from neurologist to neurologist and finally to one who thought my symptoms were caused by anxiety and sent me to a psychiatrist. The psychiatrist essentially thought the neuro was lazy, and sent me on to an MS clinic. He told me to continue to seek medical treatment, that it was NOT in my head. My next neuro was FANTASTIC, spending 3 hours with my husband and me, noting my severe weakness, hyper reflexes, Babinski sign in at least one foot, and increased muscle tone in all 4 limbs. He did testing, which all came out normal, and sent me to the endocrinologist who is treating HIM for CFS. This should bring you up to speed for the last blurb I cut and pasted from my MS forum: Does this sound familiar to anyone here?-------------------------------------------
I went to see Dr. H and he was very pleasant, a quiet, older gentleman. We talked at first after his nurse took my history on a new computer program he designed and painstakingly "taught" her to use while I was sitting there. It was a little tedious. But he was very patient with her and apologetic to me. (Forget it, I know this is not going to be brief.)
Anyway, he asked why I was there, and I told him my abbreviated story. He knows my neurologist. My WMA Neuro is a patient of his, and also, as it turns out his neighbor. They have a deep, mutual admiration for each other. That is very obvious. He asked me tons of questions, regarding energy level, libido, sleep quality, things of that nature, and the questionnaire seemed designed for me. We discussed my family medical history a bit, my social life or lack thereof, due to fatigue.
He wanted to know what testing I had done already and with what results. I told him about seeing the psychiatrist, and he took a lot of interest in that, wanting to know what exactly the psychiatrist had to say. He really made me think about what he said exactly and fully. I remembered that my psychiatrist thought I may have MS or a variant of ALS, a variant that affects the lower limbs in particular. And I told him about the other psych stuff. I had a lot of stress and anxiety in my life, but he didn't feel it was causing the periodic paralysis. He wanted me to have more medical testing done. Even wanted me to go to the Mayo Clinic if I couldn't get help in Detroit. The endo typed all this in the program.
SO....we talked about what my neuro found. Or, rather I talked. I told him I had hyper reflexes, increased muscle tone in all four limbs, Babinski's response in at least my right foot, and severe weakness in my legs, moderate weakness in my arms. I told him my NCV/EMG was normal, my PET scan was normal and I'd had normal MRIs. My blood work had always been normal. ( He thought the Babinski sign was unusual.)
Boy, who thought this was going to be brief? Then, he wanted to talk. He told me that he thought I most likely have a problem with my hypothalamus. I said, Did you just call me a Hippopotamus? No, I'm kidding! He said that the small gland in your brain that regulates many of your hormones can get out of whack, and it seemed to him, that mine is...out of said whack. When that happens, it messes up many systems. Your nervous system is one. He thinks if this is my problem, he can easily fix it. He has done the same for my neuro.
The thing is, it really is the CFS/FM thing, just getting to the cause more, in his opinion. He feels that Fibromyalgia is not a diagnosis on its own. (I have been diagnosed with Fibro years ago -- have all the tender spots -- have never been treated for it.) He feels that hypothalamic dysfunction is the underlying diagnosis for Fibro and CFS, if I understand him correctly. He didn't come right out and say that. I am guessing this is what he was getting at. If this is what my problem is, he thinks I have a severe case of it to give me periodic paralysis.
He also wanted to know if I had been tested for MS. I told him not really. No evoked potentials or anything. He said there was a question in the back of his mind about it, and if my 13 tubes of blood turn out to be fine, he'll recommend I be tested for MS. 13 tubes! That's a lot of hormones! And vitamins, and it looked like he marked off some rheumy blood work, too. C-reactive protein, I noticed. He asked if my doc did EBV. On the 20th, he's going to do a growth stimulating study. Don't know what that is, but he'll explain it first. He's out of my network, so it will cost $300. I really don't think it will be worth the money. But I can tell my neuro I tried his nice doctor's tests. Not to say the other blood work won't be valuable. If this works, he says he can have me feeling better in ONE month. Can you imagine?-------------------------------
That's my post. Has anyone heard of this from their doctors? Is it fringe medicine? I don't want to offend anyone with the "Fibro not being a diagnosis." He's not saying it's not real. He's saying it's not a diagnosis by itself, that there's something that causes it, I think.
I hate to be so long-winded! Thanks so much for reading. Let me know if you have questions or comments.
Take care and feel well!
Momzilla*
I started having odd symptoms a few years ago, mostly migraines with no headache, vertigo, culminating in severe weakness in my limbs that resulted in periodic paralysis in my legs, bilaterally, "drop foot," more accurately. I've been very frustratingly from neurologist to neurologist and finally to one who thought my symptoms were caused by anxiety and sent me to a psychiatrist. The psychiatrist essentially thought the neuro was lazy, and sent me on to an MS clinic. He told me to continue to seek medical treatment, that it was NOT in my head. My next neuro was FANTASTIC, spending 3 hours with my husband and me, noting my severe weakness, hyper reflexes, Babinski sign in at least one foot, and increased muscle tone in all 4 limbs. He did testing, which all came out normal, and sent me to the endocrinologist who is treating HIM for CFS. This should bring you up to speed for the last blurb I cut and pasted from my MS forum: Does this sound familiar to anyone here?-------------------------------------------
I went to see Dr. H and he was very pleasant, a quiet, older gentleman. We talked at first after his nurse took my history on a new computer program he designed and painstakingly "taught" her to use while I was sitting there. It was a little tedious. But he was very patient with her and apologetic to me. (Forget it, I know this is not going to be brief.)
Anyway, he asked why I was there, and I told him my abbreviated story. He knows my neurologist. My WMA Neuro is a patient of his, and also, as it turns out his neighbor. They have a deep, mutual admiration for each other. That is very obvious. He asked me tons of questions, regarding energy level, libido, sleep quality, things of that nature, and the questionnaire seemed designed for me. We discussed my family medical history a bit, my social life or lack thereof, due to fatigue.
He wanted to know what testing I had done already and with what results. I told him about seeing the psychiatrist, and he took a lot of interest in that, wanting to know what exactly the psychiatrist had to say. He really made me think about what he said exactly and fully. I remembered that my psychiatrist thought I may have MS or a variant of ALS, a variant that affects the lower limbs in particular. And I told him about the other psych stuff. I had a lot of stress and anxiety in my life, but he didn't feel it was causing the periodic paralysis. He wanted me to have more medical testing done. Even wanted me to go to the Mayo Clinic if I couldn't get help in Detroit. The endo typed all this in the program.
SO....we talked about what my neuro found. Or, rather I talked. I told him I had hyper reflexes, increased muscle tone in all four limbs, Babinski's response in at least my right foot, and severe weakness in my legs, moderate weakness in my arms. I told him my NCV/EMG was normal, my PET scan was normal and I'd had normal MRIs. My blood work had always been normal. ( He thought the Babinski sign was unusual.)
Boy, who thought this was going to be brief? Then, he wanted to talk. He told me that he thought I most likely have a problem with my hypothalamus. I said, Did you just call me a Hippopotamus? No, I'm kidding! He said that the small gland in your brain that regulates many of your hormones can get out of whack, and it seemed to him, that mine is...out of said whack. When that happens, it messes up many systems. Your nervous system is one. He thinks if this is my problem, he can easily fix it. He has done the same for my neuro.
The thing is, it really is the CFS/FM thing, just getting to the cause more, in his opinion. He feels that Fibromyalgia is not a diagnosis on its own. (I have been diagnosed with Fibro years ago -- have all the tender spots -- have never been treated for it.) He feels that hypothalamic dysfunction is the underlying diagnosis for Fibro and CFS, if I understand him correctly. He didn't come right out and say that. I am guessing this is what he was getting at. If this is what my problem is, he thinks I have a severe case of it to give me periodic paralysis.
He also wanted to know if I had been tested for MS. I told him not really. No evoked potentials or anything. He said there was a question in the back of his mind about it, and if my 13 tubes of blood turn out to be fine, he'll recommend I be tested for MS. 13 tubes! That's a lot of hormones! And vitamins, and it looked like he marked off some rheumy blood work, too. C-reactive protein, I noticed. He asked if my doc did EBV. On the 20th, he's going to do a growth stimulating study. Don't know what that is, but he'll explain it first. He's out of my network, so it will cost $300. I really don't think it will be worth the money. But I can tell my neuro I tried his nice doctor's tests. Not to say the other blood work won't be valuable. If this works, he says he can have me feeling better in ONE month. Can you imagine?-------------------------------
That's my post. Has anyone heard of this from their doctors? Is it fringe medicine? I don't want to offend anyone with the "Fibro not being a diagnosis." He's not saying it's not real. He's saying it's not a diagnosis by itself, that there's something that causes it, I think.
I hate to be so long-winded! Thanks so much for reading. Let me know if you have questions or comments.
Take care and feel well!
Momzilla*
Hi! uk2 has told me to write to you many times from the MS forum. She's said you have a welath of information about CFS and Fibromyalgia. How true!
I totally get your point about patients getting well DESPITE treatment sometimes, then giving credit to whatever they were taking at the time. Gotcha. Somehow their illness may have run its course and whatever herb or wonderful bovine hormone (!) they had been swallowing at the time becomes the new wonder drug.
The reason the MS clinic didn't do more MS testing I suppose is because I don't show any lesions on my MRIs. Plain and simple. That is critical criteria. I have ALL the other signs of MS. Just no lesions or none that show up on the older imaging equipment that was used fro my MRIs. Dagnabbit! I get this all the time. I don't fit anywhere. MS or CFS. Rather, I do fit, just not enough criteria.
The patient whom my endo treated was my own neurolologist. I really have a lot of respect for him. He is the first out of a lot of neuros to take me seriously, and spent 3 hours with me at my first visit, and I could hardly put two words together. My cognitive impairment was awful at that time. I was VERY weak, and my gait was really abnormal. He was great.
He shared with me on my second visit that he had terrible short-term memory problems and weakness. CFS. He went to the endo he referred me to, and was treated with some hormones (he tested low for testosterone -- that's all he shared with me) and exercises daily. That seems to be his treatment. If he skips exercising, he notices his cognitive function slipping. It's about metabolism, he was saying, I think. And that must have to do with the hypothalamus, right?
It sounds like this IS fringe medicine, but it makes a little bit of sense. I am eager to see what the blood work turns out to say. It would be different if he had his own lab. I know he sends it to the hospital lab. I am so desperate to feel better, but in the back of my mind, I keep thinking MS. The endo said in the back of HIS mind he had a vague suspicion of MS, too, and would tell my neuro so. We'll see.
I thank you for your comments and information. I'm at work, so really must run. Later. Hope you are feeling well!
Zilla*
I totally get your point about patients getting well DESPITE treatment sometimes, then giving credit to whatever they were taking at the time. Gotcha. Somehow their illness may have run its course and whatever herb or wonderful bovine hormone (!) they had been swallowing at the time becomes the new wonder drug.
The reason the MS clinic didn't do more MS testing I suppose is because I don't show any lesions on my MRIs. Plain and simple. That is critical criteria. I have ALL the other signs of MS. Just no lesions or none that show up on the older imaging equipment that was used fro my MRIs. Dagnabbit! I get this all the time. I don't fit anywhere. MS or CFS. Rather, I do fit, just not enough criteria.
The patient whom my endo treated was my own neurolologist. I really have a lot of respect for him. He is the first out of a lot of neuros to take me seriously, and spent 3 hours with me at my first visit, and I could hardly put two words together. My cognitive impairment was awful at that time. I was VERY weak, and my gait was really abnormal. He was great.
He shared with me on my second visit that he had terrible short-term memory problems and weakness. CFS. He went to the endo he referred me to, and was treated with some hormones (he tested low for testosterone -- that's all he shared with me) and exercises daily. That seems to be his treatment. If he skips exercising, he notices his cognitive function slipping. It's about metabolism, he was saying, I think. And that must have to do with the hypothalamus, right?
It sounds like this IS fringe medicine, but it makes a little bit of sense. I am eager to see what the blood work turns out to say. It would be different if he had his own lab. I know he sends it to the hospital lab. I am so desperate to feel better, but in the back of my mind, I keep thinking MS. The endo said in the back of HIS mind he had a vague suspicion of MS, too, and would tell my neuro so. We'll see.
I thank you for your comments and information. I'm at work, so really must run. Later. Hope you are feeling well!
Zilla*
Thanks! I replied back. Feel well!
Momzilla*
Momzilla*
Oops i meant to say, They are experimental tests and NEGATIVE results wouldn't rule out MS.
Another common result is that the person started improving before 4 or 5 years of illness on their own. Then the treatment "cured" them. There is a version of CFS that improves on it's own starting before 4 or 5 years, but sometimes then taking longer to complete. It can make a treatment seem to be the cause of cure when it was irrelevent and the person would have recovered no matter.
Another common result is that the person started improving before 4 or 5 years of illness on their own. Then the treatment "cured" them. There is a version of CFS that improves on it's own starting before 4 or 5 years, but sometimes then taking longer to complete. It can make a treatment seem to be the cause of cure when it was irrelevent and the person would have recovered no matter.
Interesting experience. A few thoughts...
Yes, if there are more tests that rule in/rule out MS you need to be tested for MS. First of all CFS can't be diagnosed without ruling out MS and you don't want to be treated for the wrong condition. These conditions react differently to the same drugs. Also, the paralysis your describing and the rest of that list, isn't very CFS/FM like. I don't know if they are MS like since I don't much about it. Why oh why didn't the MS clinic do more testing? There are some people with a cross between MS and CFS that get stuck trying to find a home.
There are differences between CFS and FM so it's logical to pick one if the picture fits better. They are very similar so they get lumped together a lot. Some people have cross over symptoms, i.e seems like both CFS and FM. With anything experimental I'd be cautious about paying attention to my symptoms and stopping if it doesn't feel right or doesn't help for any reason. Sometimes this stuff can make you worse. Actually Debby learned the hard way that the same thing holds with using doctors meds with cfs too. On the plus side sometimes one of these tests hits the spot and really helps with finding an angle for treatment. A couple did for me. (And that doc was going to give me bovine cow hormone which he sold himself, which I skipped and used the tests to figure out something else for myself.)
There are definitely theories and studies showing the hypothalamus dysfunction is involved CFS. Basically they show the HTP axis is involved, i.e. the hypothalamus-thyroid-adrenal axis. I know of no one saying they can fix that imbalance. There isn't even a clear idea of how it's messed up or how it happens to get that way. If you do try what he does and it works please let us all know!
I'm not finding now where you wrote about it, but a few doctors have talked about low growth hormone and cfs and other illnesses. However, it's not a researched phemomenon about what's causing what, and whether taking the hormone is good and safe. Some people swear by it.
Waiting until the 13 vials come back normal to test for MS doesn't make sense. Any of this stuff could be abnormal even in a healthy feeling person. They are experimental tests and positive results wouldn't rule out MS.
Sounds intriguing to pursue, since he's had success with one person. Ask more questions though, like how often has his treatment worked and not worked, what are possible risks, is anyone else doing this treatment, what's he basing it on, has anyone gotten worse on it, how many people don't complete it (a big clue on how hard it is or how damaging it is), etc.. Also the person who was treated (can't ask in this case) but generally I ask them quiet questions about their prior state. Almost always what's happened and what I was told happened - don't match. The person didn't have CFS or they aren't as well as the practitioner says or something else was done at the same time (usually a food elimination amazingly enough). Your instincts are already telling you all of this obviously.
Finally, kudos to the psychiatrist. We should all send him thanks you's for having a clue!
Keep us up to date on what you are thinking and are finding out.
Yes, if there are more tests that rule in/rule out MS you need to be tested for MS. First of all CFS can't be diagnosed without ruling out MS and you don't want to be treated for the wrong condition. These conditions react differently to the same drugs. Also, the paralysis your describing and the rest of that list, isn't very CFS/FM like. I don't know if they are MS like since I don't much about it. Why oh why didn't the MS clinic do more testing? There are some people with a cross between MS and CFS that get stuck trying to find a home.
There are differences between CFS and FM so it's logical to pick one if the picture fits better. They are very similar so they get lumped together a lot. Some people have cross over symptoms, i.e seems like both CFS and FM. With anything experimental I'd be cautious about paying attention to my symptoms and stopping if it doesn't feel right or doesn't help for any reason. Sometimes this stuff can make you worse. Actually Debby learned the hard way that the same thing holds with using doctors meds with cfs too. On the plus side sometimes one of these tests hits the spot and really helps with finding an angle for treatment. A couple did for me. (And that doc was going to give me bovine cow hormone which he sold himself, which I skipped and used the tests to figure out something else for myself.)
There are definitely theories and studies showing the hypothalamus dysfunction is involved CFS. Basically they show the HTP axis is involved, i.e. the hypothalamus-thyroid-adrenal axis. I know of no one saying they can fix that imbalance. There isn't even a clear idea of how it's messed up or how it happens to get that way. If you do try what he does and it works please let us all know!
I'm not finding now where you wrote about it, but a few doctors have talked about low growth hormone and cfs and other illnesses. However, it's not a researched phemomenon about what's causing what, and whether taking the hormone is good and safe. Some people swear by it.
Waiting until the 13 vials come back normal to test for MS doesn't make sense. Any of this stuff could be abnormal even in a healthy feeling person. They are experimental tests and positive results wouldn't rule out MS.
Sounds intriguing to pursue, since he's had success with one person. Ask more questions though, like how often has his treatment worked and not worked, what are possible risks, is anyone else doing this treatment, what's he basing it on, has anyone gotten worse on it, how many people don't complete it (a big clue on how hard it is or how damaging it is), etc.. Also the person who was treated (can't ask in this case) but generally I ask them quiet questions about their prior state. Almost always what's happened and what I was told happened - don't match. The person didn't have CFS or they aren't as well as the practitioner says or something else was done at the same time (usually a food elimination amazingly enough). Your instincts are already telling you all of this obviously.
Finally, kudos to the psychiatrist. We should all send him thanks you's for having a clue!
Keep us up to date on what you are thinking and are finding out.
Hi... I just wanted to let you know that I have terrible brain fog today. So I sent you a private message and gave you a link that I hope will be helpful to you.
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