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*
Also-- How did you know you had CFS? What made you go see a doctor, if you don't mind me asking. Did you have a sudden onset of symptoms, or gradual?
Also -- I didn't answer about gastro questions. I really don't have any symptoms except for GERD. Occasionally I have trouble with constipation. I am dizzy all the time, too, I should have said. I still have times when I have episodes of vertigo. In the morning my dizziness is worst. I used to take Antivert, but it made me sleepy, swhich was the last thing I needed. And it didn't help. I had a terrible episode of vertigo years ago for which they kept me overnight at the hospital. I couldn't stand up. I was vomiting, the whole shebang.
The thing which makes me think CFS is the post-exertional malaise, I guess. I don't hear as much about that in MS. Or it's not called that. Once at work, I had to carry some journals from my office to another, no stairs or anything. They were about 7 pounds, and there were 38 steps between offices. I counted later, because my doctor asked me to. After I carried these journals, I got back to my desk and thought I was going to die. (Sort of) I had to rest my head on my desk and was breathing hard for 45 minutes. It took me that long to recover. If the building had been on fire, they'd have had to come get me. And I was off for the rest of the day. Funny, but I don't recall being down the next day. After getting a good night's rest, I'm pretty sure I was much better. Would that be atypical of CFS malaise?
I think I'm done now.....
Also -- I didn't answer about gastro questions. I really don't have any symptoms except for GERD. Occasionally I have trouble with constipation. I am dizzy all the time, too, I should have said. I still have times when I have episodes of vertigo. In the morning my dizziness is worst. I used to take Antivert, but it made me sleepy, swhich was the last thing I needed. And it didn't help. I had a terrible episode of vertigo years ago for which they kept me overnight at the hospital. I couldn't stand up. I was vomiting, the whole shebang.
The thing which makes me think CFS is the post-exertional malaise, I guess. I don't hear as much about that in MS. Or it's not called that. Once at work, I had to carry some journals from my office to another, no stairs or anything. They were about 7 pounds, and there were 38 steps between offices. I counted later, because my doctor asked me to. After I carried these journals, I got back to my desk and thought I was going to die. (Sort of) I had to rest my head on my desk and was breathing hard for 45 minutes. It took me that long to recover. If the building had been on fire, they'd have had to come get me. And I was off for the rest of the day. Funny, but I don't recall being down the next day. After getting a good night's rest, I'm pretty sure I was much better. Would that be atypical of CFS malaise?
I think I'm done now.....
I'm so sorry, but I haven't listed all my sypmtoms. I have been busy with my five sons this past week/weekend. I won't look above to see the full CFS profile, I'll just list what I have experienced, if you don't mind, and see if any applies. Some is going to be repetitive of my first post, I'm afraid.
New headache type (I know this is indicative of CFS)
Migraines starting nearly 3 years ago out of the blue
Vertigo
Hearing loss (I wear hearing aids due to sensorineural hearing loss)
Nystagmus
Double vision (when gazing laterally)
Incredible fatigue (I know you know what I mean)
Occasional blurred vision -- like I can't focus
Urinary retention (I think -- it feels like when Im done, I still have to go -- sorry for being graphic!)
Swallowing difficulty (my food often hangs in my throat)
Leg weakness -- at times severe
Arm weakness - mild
Hyper reflexes
Babinski's sign
Increased muscle tone in all four limbs
I have all 18 tender points for FM, or had them several years ago when I was examined by a rheumatologist regarding osteoarthritis. I DO get post-exertional malaise when I overdo. But it's getting better. I once teared up at the prospect of carrying two gallon jugs of milk into my son's school when it was his day to celebrate his birthday with cupcakes. The jugs were looking up at me, and I could not face carrying even one of them into the school. With tears in my eyes, I had to ask the school secretary for help. She knows I am having health problems and gave me a hig and carried them, of course. They would have done me in. I'd have needed to be in bed for the rest of the day. I don't know that I could even have lifted them at that point of my disability. I'm better now.
I should also ask, perhaps, does CFS go in cycles? Are there better times or worse? Do things ever clear up almost completely for a while? Because I feel pretty good right now. The fatigue is always there, and my legs have never completely returned to normal, my gait is awkward, but I'm SO much stronger right now. The endo did find my legs to be a bit weak, still, though. Weird!
I thank you again for any info you can pass along. You're so sweet to share it with me! Have a nice Sunday!
Zilla*
New headache type (I know this is indicative of CFS)
Migraines starting nearly 3 years ago out of the blue
Vertigo
Hearing loss (I wear hearing aids due to sensorineural hearing loss)
Nystagmus
Double vision (when gazing laterally)
Incredible fatigue (I know you know what I mean)
Occasional blurred vision -- like I can't focus
Urinary retention (I think -- it feels like when Im done, I still have to go -- sorry for being graphic!)
Swallowing difficulty (my food often hangs in my throat)
Leg weakness -- at times severe
Arm weakness - mild
Hyper reflexes
Babinski's sign
Increased muscle tone in all four limbs
I have all 18 tender points for FM, or had them several years ago when I was examined by a rheumatologist regarding osteoarthritis. I DO get post-exertional malaise when I overdo. But it's getting better. I once teared up at the prospect of carrying two gallon jugs of milk into my son's school when it was his day to celebrate his birthday with cupcakes. The jugs were looking up at me, and I could not face carrying even one of them into the school. With tears in my eyes, I had to ask the school secretary for help. She knows I am having health problems and gave me a hig and carried them, of course. They would have done me in. I'd have needed to be in bed for the rest of the day. I don't know that I could even have lifted them at that point of my disability. I'm better now.
I should also ask, perhaps, does CFS go in cycles? Are there better times or worse? Do things ever clear up almost completely for a while? Because I feel pretty good right now. The fatigue is always there, and my legs have never completely returned to normal, my gait is awkward, but I'm SO much stronger right now. The endo did find my legs to be a bit weak, still, though. Weird!
I thank you again for any info you can pass along. You're so sweet to share it with me! Have a nice Sunday!
Zilla*
Yep, the patient CAN push back. They may not be able to get out of bed for a week afterward...
One problem with testing of cfs patients that's been made a lot and helped erroneously show cfs as not a big deal was the testing style. They'd test the patients with exercise or congitive tests for a short while - and they'd show up normal as can be. But, the patients would go home and stay there for a week in bed. Finally they've been doing more testing over two days and longer periods of time (with the cognitive) and the non-bounceback factor is showing up. (Also, they've started adding chest monitoring devices to the original testing style and seeing abnormalities, but that's another story that's not important here.) Finally, it's showing that on day two, cfs patients can't do what healthy subjects can do (post-exertial malaise).
To make it more complicated, but that's important since this is complicated...
There are crossover MS/CFS patients and maybe they have some of the weakness mixed in (I don't know.) But you don't have enough of a CFS profile to consider that.
The two I'm thinking of are: the one crossover had a classic MS eye problem (I don't know the name) but the rest was ALL cfs symptoms. She didn't have weakness on testing. The other had lesions, but most symptoms were overwhelmingly cfs and she was the one who decided based on her reaction to steroids. One of the lesions, a big one, had resulted in paralysis that cleared up after several months and triggered after a cfs-typical bad reaction to a medication. FYI, mayo clinic called her atypical MS, and she finally decided they were at a loss, not listening to her symptoms (including fevers), and making no sense. CFS treatments helped her where MS ones didn't and she was doing much better. She was a hard case to figure out.
You aren't describing even a little bit of the cfs symptoms both of these crossovers had. They had the full profile.
Maybe the error here is that you can have MS without having lesions large enough to show up on current equipment and doctors and medicine doesn't know that yet.
One problem with testing of cfs patients that's been made a lot and helped erroneously show cfs as not a big deal was the testing style. They'd test the patients with exercise or congitive tests for a short while - and they'd show up normal as can be. But, the patients would go home and stay there for a week in bed. Finally they've been doing more testing over two days and longer periods of time (with the cognitive) and the non-bounceback factor is showing up. (Also, they've started adding chest monitoring devices to the original testing style and seeing abnormalities, but that's another story that's not important here.) Finally, it's showing that on day two, cfs patients can't do what healthy subjects can do (post-exertial malaise).
To make it more complicated, but that's important since this is complicated...
There are crossover MS/CFS patients and maybe they have some of the weakness mixed in (I don't know.) But you don't have enough of a CFS profile to consider that.
The two I'm thinking of are: the one crossover had a classic MS eye problem (I don't know the name) but the rest was ALL cfs symptoms. She didn't have weakness on testing. The other had lesions, but most symptoms were overwhelmingly cfs and she was the one who decided based on her reaction to steroids. One of the lesions, a big one, had resulted in paralysis that cleared up after several months and triggered after a cfs-typical bad reaction to a medication. FYI, mayo clinic called her atypical MS, and she finally decided they were at a loss, not listening to her symptoms (including fevers), and making no sense. CFS treatments helped her where MS ones didn't and she was doing much better. She was a hard case to figure out.
You aren't describing even a little bit of the cfs symptoms both of these crossovers had. They had the full profile.
Maybe the error here is that you can have MS without having lesions large enough to show up on current equipment and doctors and medicine doesn't know that yet.
Are you sure about the true weakness? In CFS the muscles aren't actually weak? Like if the doc does the resistance thing, pushing on your legs, a CFS patient CAN push back with strength? I understand it would be taxing and the patient would have post-exertional malaise, and all. I just want to understand about the true weakness.
This would be very key for me. I SO appreciate your information and concern.
Thank you!
Momzilla*
This would be very key for me. I SO appreciate your information and concern.
Thank you!
Momzilla*
For all the length of my answer, I didn't really include a description of the key symptoms of CFS and FM... it's hard to find words to describe but I'll try.
For CFS there's a fatigue in the muscles, sometimes described as heaviness, that makes little move hard to do because it takes so much effort from the depths to try. Sometimes it's described as weakness but it's not that the muscles are weak and they don't test as weak in a neurologists office. They can still do stuff, but it's exhausting at the muscular level and overall just to try very small tasks like brushing teeth - or breathing (that's one of mine still, sob).
For FM there can be a burning and/or intense senstation under the skin. It can feel like it's at the celluar level and everything is screaming in pain. There are often a lot of joint pains as well or shooting pains, or sometimes instead that's the focus.
Hope that makes it easier to distinguish from MS symptoms. None of the three are fun, now are they?
Maybe someone will come along who can add to the description better.
For CFS there's a fatigue in the muscles, sometimes described as heaviness, that makes little move hard to do because it takes so much effort from the depths to try. Sometimes it's described as weakness but it's not that the muscles are weak and they don't test as weak in a neurologists office. They can still do stuff, but it's exhausting at the muscular level and overall just to try very small tasks like brushing teeth - or breathing (that's one of mine still, sob).
For FM there can be a burning and/or intense senstation under the skin. It can feel like it's at the celluar level and everything is screaming in pain. There are often a lot of joint pains as well or shooting pains, or sometimes instead that's the focus.
Hope that makes it easier to distinguish from MS symptoms. None of the three are fun, now are they?
Maybe someone will come along who can add to the description better.
Did I make that long enough?? Another idea is, if there is a SSDI lawyer familar with cfs from a support group - the laywer will know that good cfs doctors for sure.
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