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*
Yes, Curls has been amazing! I can't thank her enough! She is a wealth of information and has spent so much time educating me on the evils of CFS and Fibro.
I'm at work right now, but will write more later. I hope you feel better, uk!
What are you trying to say about us? That we talk too much?!!
I suppose it's true.... Thanks again for steering me to Curls and the forum!
Zilla*
I'm at work right now, but will write more later. I hope you feel better, uk!
What are you trying to say about us? That we talk too much?!!
I suppose it's true.... Thanks again for steering me to Curls and the forum!
Zilla*
Hi
Zilla
hope curls has been able to help you out abit, she has a amazing amount of info and time for people.
I live in limbo land as well and fill like a triangle surrounded by boxes and just want to know, i fit more FM then anything i feel but have flares of internce nerve pain lots of hip pain,numbness and shooting pains. My brain does not work like it should anymore i lose my words and conversations and of late lose where i am!! very odd that one but maybe thats medication based. I read somewhere that MS.FM and CFS in france are treated as the same illnesses as they are so simular. Im a waiting results from my LP and have a pelvic MRI to see if there are problems with the nerves there, but that would not explain my nerve pain in other areas of my body or my brain defunction!!!
I know there probley come back clear which is good but i want a answer so i can get on with this, im alot more positive since starting my A/D (after the week long side effects) and go out in the wheelchair at least twice a week now and am trying to get about with my stick, im coping abit better at home.
I talked to a retired GP of my friends and she thought it was all linked to the car crash last year in nov that whiplash and low back injuring can not show up on the MRI and she had little faith in the MRI they used at my local hospital and thought it was ashame that they did not do it at the london hospital where i had my LP and EMG done where they use contrast, so abit confused really, but i dont think its MS i have but i do think its FM/CFS linked in with lower back problems/nerve damage which i guess they might find in the next MRI in a few weeks. Who knows.
Take Care hun
Curls
hope you didnt mind me telling zilla to pick your brains, some very long postings!! and i thought i could write you both have out- done me lol.
Ill email you soon.
take care
Zilla
hope curls has been able to help you out abit, she has a amazing amount of info and time for people.
I live in limbo land as well and fill like a triangle surrounded by boxes and just want to know, i fit more FM then anything i feel but have flares of internce nerve pain lots of hip pain,numbness and shooting pains. My brain does not work like it should anymore i lose my words and conversations and of late lose where i am!! very odd that one but maybe thats medication based. I read somewhere that MS.FM and CFS in france are treated as the same illnesses as they are so simular. Im a waiting results from my LP and have a pelvic MRI to see if there are problems with the nerves there, but that would not explain my nerve pain in other areas of my body or my brain defunction!!!
I know there probley come back clear which is good but i want a answer so i can get on with this, im alot more positive since starting my A/D (after the week long side effects) and go out in the wheelchair at least twice a week now and am trying to get about with my stick, im coping abit better at home.
I talked to a retired GP of my friends and she thought it was all linked to the car crash last year in nov that whiplash and low back injuring can not show up on the MRI and she had little faith in the MRI they used at my local hospital and thought it was ashame that they did not do it at the london hospital where i had my LP and EMG done where they use contrast, so abit confused really, but i dont think its MS i have but i do think its FM/CFS linked in with lower back problems/nerve damage which i guess they might find in the next MRI in a few weeks. Who knows.
Take Care hun
Curls
hope you didnt mind me telling zilla to pick your brains, some very long postings!! and i thought i could write you both have out- done me lol.
Ill email you soon.
take care
Well, the trouble is getting a doc to prescribe the drugs. And they're VERY expensive (all MS drugs are injectible only, thousands of dollars), so an insurance company wants a definitive diagnosis if they're going to pay for them. I have been on steroids once, I can't recall what for. It was just a short burst. I didn't have a BAD reaction. I felt great. I thought everyone felt great on steroids. (It was a low dose, maybe 60 mg per day) They helped, as I recall, but not for any symptoms I'm having now. It must have been after my spine surgery. I had a bad throat infection, and needed them for swelling, I think.
Nystagmus is when you're trying to read, but your eyes can't follow the words, they jump all over the page. I think you mentioned something like that. And Babinski's sign is an infantile reflex that shouldn't appear after age two, where the examiner strokes the underside of the patient's sole on the side and elicits a certain response. The great toe goes up, and the rest of the toes fan out. It indicates central nervous system damage or disease. It can mean MS.
I used to ne sleep deprived, as I have sleep apnea, but have a breathing machine now. I don't sleep much better, but I do have dreams for the first time in many years. So, the FM diagnosis makes more sense. I really didn't think I had it. But I did have all the spots. Once I broke my cycle of bad sleep, it got better.
I must get back to my family, but I will wait for my tests to come back for now. I really do not have the energy for support groups at the moment. It's a fantastic idea, but with five kids in four different schools, and my husband traveling a lot, I don't think I have it in me right now, while my docs are working hard to diagnose me. If I run into a brick wall still, that's what I'll do.
Yes, CFS and MS do mimic each other with so many symptoms. Even the viruses that are linked to them are the same. I have done a lot of research into MS, since so many health care providers suggested it early this year. The only thing that keeps me from the MS Dx is the missing lesions. But I don't completely fit CFS either. So, I continue in limbo, where I am growing to be most comfortable....
Have a good night!
Zilla*
Nystagmus is when you're trying to read, but your eyes can't follow the words, they jump all over the page. I think you mentioned something like that. And Babinski's sign is an infantile reflex that shouldn't appear after age two, where the examiner strokes the underside of the patient's sole on the side and elicits a certain response. The great toe goes up, and the rest of the toes fan out. It indicates central nervous system damage or disease. It can mean MS.
I used to ne sleep deprived, as I have sleep apnea, but have a breathing machine now. I don't sleep much better, but I do have dreams for the first time in many years. So, the FM diagnosis makes more sense. I really didn't think I had it. But I did have all the spots. Once I broke my cycle of bad sleep, it got better.
I must get back to my family, but I will wait for my tests to come back for now. I really do not have the energy for support groups at the moment. It's a fantastic idea, but with five kids in four different schools, and my husband traveling a lot, I don't think I have it in me right now, while my docs are working hard to diagnose me. If I run into a brick wall still, that's what I'll do.
Yes, CFS and MS do mimic each other with so many symptoms. Even the viruses that are linked to them are the same. I have done a lot of research into MS, since so many health care providers suggested it early this year. The only thing that keeps me from the MS Dx is the missing lesions. But I don't completely fit CFS either. So, I continue in limbo, where I am growing to be most comfortable....
Have a good night!
Zilla*
Hi, Now your describing things that do fit with cfs - veritgo, eye blurred, and others i already mentioned. Even vomiting with the vertigo fits (not often but it does happen) Maybe your a mixed case?? If you read through some of my other posts, mostly to scoobyuk2, about dyautomomias and google on them, maybe some of the symptoms will ring bells that they don't realize you have. That's where one type of Cfs dizziness comes from. (I also get a version that's immune related.) The hard breathing exhaustion post exertion (assuming 7 notebooks can be called that), also reminds me of dysautomia and a similar reaction I had to wiping down a sink. It raises the blood pressure, it then is just too much and the body acts like you've climbed mt. everest.
The 18 FM points show up positive on healthy people when they are sleep deprived, so they aren't very definitive.
Have you physically been to support groups for both? It's a great way to get a feel for the symptoms. After attended a group for a while I made a list of my symptoms and a list of all the cfs sxs I'd heard people say. I was sure I didn't have cfs but only had a bad lingering virus. Then compared lists, and I was sure of what I had. It was an ahah moment of duh, yep the docs were right, this is cfs. Also, I'd been using different names for some things.
I don't know what Nystagmus or Babinski's sign are.
I've heard it said that MS is CFS's closest relative, so it's not surprising that's it hard to distingish.
My onset was a bad virus with some weird muscular symptoms, then 3 months later it flipped one day into cfs. I just knew and can tell you the time and place. I described it as I had a virus but could recover, and then the "oophm" left, by body didn't feel like it couldn't recover, and knew this was serious.
CFS can be cyclic. Also postexertion can be any amount of time afterward. It's just such an abnormal reaction that it's notable.
I just haven't heard any of the MS symptoms you mentioned like actual paralysis or actual muscle weakness, in the years that i've talked with people about cfs, except for the cases I've mentioned. I'd go back to trying treatments for both and see what works. For MS it's so important to try the drugs to see if it can be arrested (that's my understanding), so...?
The 18 FM points show up positive on healthy people when they are sleep deprived, so they aren't very definitive.
Have you physically been to support groups for both? It's a great way to get a feel for the symptoms. After attended a group for a while I made a list of my symptoms and a list of all the cfs sxs I'd heard people say. I was sure I didn't have cfs but only had a bad lingering virus. Then compared lists, and I was sure of what I had. It was an ahah moment of duh, yep the docs were right, this is cfs. Also, I'd been using different names for some things.
I don't know what Nystagmus or Babinski's sign are.
I've heard it said that MS is CFS's closest relative, so it's not surprising that's it hard to distingish.
My onset was a bad virus with some weird muscular symptoms, then 3 months later it flipped one day into cfs. I just knew and can tell you the time and place. I described it as I had a virus but could recover, and then the "oophm" left, by body didn't feel like it couldn't recover, and knew this was serious.
CFS can be cyclic. Also postexertion can be any amount of time afterward. It's just such an abnormal reaction that it's notable.
I just haven't heard any of the MS symptoms you mentioned like actual paralysis or actual muscle weakness, in the years that i've talked with people about cfs, except for the cases I've mentioned. I'd go back to trying treatments for both and see what works. For MS it's so important to try the drugs to see if it can be arrested (that's my understanding), so...?
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