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*
The tricky thing is MS and CFS cognitive impairments are almost identical. Last winter, I had to put a sticky note on my phone at work to remember what to say when I answered it. Word finding was my biggest challenge. And short term memory. I used to forget having whole conversations. I just completed a neuropsych evaluation, and thought I did pretty well. My impairments have gotten dramatically better lately. The only things that remain poor are concentration a bit, and using language to express my thoughts, I guess. And I LOVE words. I write a lot in my spare time, or did. The test had a vocabulary section that was oral, and I had a very hard time with it. I knew the words, but couldn't use words to define them. It was awful.
I don't get fevers. No enlarged lymph glands. No sore throats. My biggest complaint would be the weakness, and paralysis. Does anyone on the forum experiance that?
What MS treatments are you talking about? Something prescribed? Alternative?
I actually could ask my neuro about his treatment, I think. He's a very personable guy. I won't see him until mid-December. I just wish he would entertain the notion of MS without lesions on MRI, just so I could get the testing out of the way. He did do a PET scan, and other testing, but that does nothing to rule out MS. I can't tell you how lucky I have been in comparison to many others on the MS forum who can't even get a neuro to give them a proper neuro work-up. It's ridiculous!
Can I ask you, what sort of specialist do you see for CFS? What kind of doc treats you, and how long did it take for you to get a diagnosis?
I am looking for trouble at work here. My boss forced me to go back full time. She's awful. Must go.
Take care!
Zilla*
I don't get fevers. No enlarged lymph glands. No sore throats. My biggest complaint would be the weakness, and paralysis. Does anyone on the forum experiance that?
What MS treatments are you talking about? Something prescribed? Alternative?
I actually could ask my neuro about his treatment, I think. He's a very personable guy. I won't see him until mid-December. I just wish he would entertain the notion of MS without lesions on MRI, just so I could get the testing out of the way. He did do a PET scan, and other testing, but that does nothing to rule out MS. I can't tell you how lucky I have been in comparison to many others on the MS forum who can't even get a neuro to give them a proper neuro work-up. It's ridiculous!
Can I ask you, what sort of specialist do you see for CFS? What kind of doc treats you, and how long did it take for you to get a diagnosis?
I am looking for trouble at work here. My boss forced me to go back full time. She's awful. Must go.
Take care!
Zilla*
I don't have any problems with paralysis, but I have had neurocognitive impairments such as short term memory problems, some confusion and trouble processing words.
There is a national laboratory that is doing a test on spinal fluid to help physicians diagnose both fibromyalgia and chronic fatigue syndrome. The test is still in the research phase, so more than likely... insurance companies will not pay for this test. The name of the lab is Red Labs USA and if you do a google search on them, you will find their website.
Interesting. And thanks for your website, which I found interesting as well. Really, one of the only tests that I've had done that has come back abnormal was a lumbar puncture an ER doc did once when I had trouble with walking. My protein level was high, just out of normal range.
Insurance companies are terrible. I work for a surgeon and took a medical billing course. The surgeon's wife is the office manager here, and has forced me to go back top work full time, against my doctor's recommendation or lose my family's health benefits. It's rough. And here I am wasting her dime. I really shouldn't.
Hope you're feeling better today!
Zilla*
Insurance companies are terrible. I work for a surgeon and took a medical billing course. The surgeon's wife is the office manager here, and has forced me to go back top work full time, against my doctor's recommendation or lose my family's health benefits. It's rough. And here I am wasting her dime. I really shouldn't.
Hope you're feeling better today!
Zilla*
Are you married ? If so, it would be a really good idea for your husband to get insurance from his work, if possible.
As far as your employer... if you need special accommodations because of your disability, you do have rights through the American With Disabilities Act. If you have too many absences and are at risk of losing your job, look into the Family Medical Leave Act.
I'm sending you another link that physicians use to try to diagnose patients with either MS or CFS.
Okay, so cognitive dsyfunction isn't going to differentiate for you. And sore throat fevers and such aren't true for all cfs folks.
The medication I'm think of was regular standard MS treatment. I've always pictured it as the beta immunosuppresant stuff that I don't know enough to name properly. Are they steriods? I remember her saying steroids. Apparently they help with symptoms in MS patients. Didn't for her & she had a typical CFS reaction. Of course I don't know what that is because I avoid stuff like that like the plague, but some researching should turn it up. Based on that diff was final straw, she concluded she had CFS.
I did take an antifungal with steriod. Insert had warnings of possible bad reactions, and of course I had them. (I was taking it topically and still managed to get the ingested reactions.) I don't remember what they were specifically, but I remember they were exactly the kind of way a CFS patient would react. So, asking the pharmacy for an insert for that type medication...
I know I'm not being very helpful with the vagueness here, but I BET this is a simple way for you to tell more definitely without having testing, insurance won't pay for until a lesion shows up on an MRI. (Can you buy a special magic marker?) Steriods are used for so much a doctor can come up with some reason to give them. (Just be careful though, steriods are powerful, so read all inserts and be mindful.)
If this is it for your symptom list, it doesn't fit CFS/FM really. It sounds like MS. The only CFS/FM symptoms you've listed are fatigue and cognitive dsyfunction, and they are part of MS. With CFS you've almost always have to have post-exertial malaise. With FM there's roaving odd instense pains and spasms at the least. Actually paralysis isn't part of cfs/fm. Numbness is, but it's temporary for minutes or an hour, not days. Cfs/fm tends to hit full blast till your bed ridden from the start in sudden onset. My understanding that MS like most illness has an intial assault but the worst is usually later (if) it progresses.
Do you have stomach problems, IBS, dizziness, disoriented in space, vision problems where things jump around in space and blurring for no reason, the vagial problems folks described in another post, hypersensitivity to enironment such as lights noise heat cold smells chemicals and things no one else ever noticed were there, arthritic stiffness without the swelling, tendintious, unexplained headaches, constant need to drink, swallowing difficulties, chest pains when standing or sitting up, new skin rashes or fungal infections, and so on, the list is long of unexpected symptoms that crop up... Unless you are gripping about a whole bunch of things that make no sense to anyone who doesn't have cfs/fm, it's not likely to be cfs/fm.
I don't want to "play doctor". ...but as you pointed out sometimes doctors do an amazing job of not playing doctor! The good thing about MS is that there are some treatments out there, and there's more known and being researched on it than for cfs/fm. I'm not wishing MS on you, but better to figure it out and know what to treat! Hope this helps!
Are you in the US? As long as you have insurance, you may be able to buy an affordable independent plan. I was able to fill the gap from cobra to the next plan with something. It took a lot of calls and was one blue cross plan not in my region but i was eligible for, and the one in my region was twice as much. You get the picture - it was a messy as getting a diagnosis. Do you know anyone with a business who could put you on part time payroll and use you to get enough personnel to get a small business plan. It's so hard with small businesses to balance their needs with a sick employees. Has to be so frustrating all around. Think a doc would get it better though.
You asked some other questions... I got diagnosed quickly by my 2nd doctor within a month of onset. (I objected and told him it couldn't be cfs because I didn't just feel crumby, I was disabled.) He didn't tell me enough though, and I think I would have had a different course if I'd known how serious this is and treated it that way. Oh well, you never know what would turn out what way. Basically for cfs any doctor with a clue diagnoses it so it can be primary, infectious disease, allergist, neurologist, immunologist, rheumatologist. I got diagnosed by all of the above at different times. (I've also been treated poorly and misdiagnosed by other doctors of the same specialities.) Classically FM is done by rheumatolists and they should have a clue. Infectious diseases often get the cfs cases, but not all of them diagnose it. Recent study shows 80% of cfs patients are not diagnosed! So the best bet is find someone familar with the illness and start there. ...try a local support group or trial and error. I did better at the large teaching hospitals, but not always. I've mentioned experts in various parts of the country in various posts. Maybe you'll be able to get to one of them. Generally FM has more doctor belief so their support groups may have more docs to refer to.
The medication I'm think of was regular standard MS treatment. I've always pictured it as the beta immunosuppresant stuff that I don't know enough to name properly. Are they steriods? I remember her saying steroids. Apparently they help with symptoms in MS patients. Didn't for her & she had a typical CFS reaction. Of course I don't know what that is because I avoid stuff like that like the plague, but some researching should turn it up. Based on that diff was final straw, she concluded she had CFS.
I did take an antifungal with steriod. Insert had warnings of possible bad reactions, and of course I had them. (I was taking it topically and still managed to get the ingested reactions.) I don't remember what they were specifically, but I remember they were exactly the kind of way a CFS patient would react. So, asking the pharmacy for an insert for that type medication...
I know I'm not being very helpful with the vagueness here, but I BET this is a simple way for you to tell more definitely without having testing, insurance won't pay for until a lesion shows up on an MRI. (Can you buy a special magic marker?) Steriods are used for so much a doctor can come up with some reason to give them. (Just be careful though, steriods are powerful, so read all inserts and be mindful.)
If this is it for your symptom list, it doesn't fit CFS/FM really. It sounds like MS. The only CFS/FM symptoms you've listed are fatigue and cognitive dsyfunction, and they are part of MS. With CFS you've almost always have to have post-exertial malaise. With FM there's roaving odd instense pains and spasms at the least. Actually paralysis isn't part of cfs/fm. Numbness is, but it's temporary for minutes or an hour, not days. Cfs/fm tends to hit full blast till your bed ridden from the start in sudden onset. My understanding that MS like most illness has an intial assault but the worst is usually later (if) it progresses.
Do you have stomach problems, IBS, dizziness, disoriented in space, vision problems where things jump around in space and blurring for no reason, the vagial problems folks described in another post, hypersensitivity to enironment such as lights noise heat cold smells chemicals and things no one else ever noticed were there, arthritic stiffness without the swelling, tendintious, unexplained headaches, constant need to drink, swallowing difficulties, chest pains when standing or sitting up, new skin rashes or fungal infections, and so on, the list is long of unexpected symptoms that crop up... Unless you are gripping about a whole bunch of things that make no sense to anyone who doesn't have cfs/fm, it's not likely to be cfs/fm.
I don't want to "play doctor". ...but as you pointed out sometimes doctors do an amazing job of not playing doctor! The good thing about MS is that there are some treatments out there, and there's more known and being researched on it than for cfs/fm. I'm not wishing MS on you, but better to figure it out and know what to treat! Hope this helps!
Are you in the US? As long as you have insurance, you may be able to buy an affordable independent plan. I was able to fill the gap from cobra to the next plan with something. It took a lot of calls and was one blue cross plan not in my region but i was eligible for, and the one in my region was twice as much. You get the picture - it was a messy as getting a diagnosis. Do you know anyone with a business who could put you on part time payroll and use you to get enough personnel to get a small business plan. It's so hard with small businesses to balance their needs with a sick employees. Has to be so frustrating all around. Think a doc would get it better though.
You asked some other questions... I got diagnosed quickly by my 2nd doctor within a month of onset. (I objected and told him it couldn't be cfs because I didn't just feel crumby, I was disabled.) He didn't tell me enough though, and I think I would have had a different course if I'd known how serious this is and treated it that way. Oh well, you never know what would turn out what way. Basically for cfs any doctor with a clue diagnoses it so it can be primary, infectious disease, allergist, neurologist, immunologist, rheumatologist. I got diagnosed by all of the above at different times. (I've also been treated poorly and misdiagnosed by other doctors of the same specialities.) Classically FM is done by rheumatolists and they should have a clue. Infectious diseases often get the cfs cases, but not all of them diagnose it. Recent study shows 80% of cfs patients are not diagnosed! So the best bet is find someone familar with the illness and start there. ...try a local support group or trial and error. I did better at the large teaching hospitals, but not always. I've mentioned experts in various parts of the country in various posts. Maybe you'll be able to get to one of them. Generally FM has more doctor belief so their support groups may have more docs to refer to.
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