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Hypothalamic dysfunction?
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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*
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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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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.  
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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.
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Thanks!  I replied back.  Feel well!

Momzilla*
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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*
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Have you tried any of the MS treatments?  I know if you react well to them it's likely MS and not CFS  I know someone with a confusing profile who tried them and had more of a CFS reaction to them than a typical MS reaction.  She concluded between that reaction and her fevers inspite of a huge lesion and other MS symptoms that what she had was CFS.  That might be a way to figure it out for yourself when the docs just can't put their finger (or lesion) on it.  

Beyond what you've listed and fatigue do you have other symptoms?  Is cognitive stuff common to MS?  Also, the CFS cognitive has a certain profile to it that's recognizable, short term memory, language word finding, concentration, holding more than one thought in head.  If you list them here, maybe someone can get a sense of if any of the rest of your profile is CFS/FM like.

I did figure out that your neuro was treated by your endo :) (hence my comment that in this case you couldn't ask him...).

Feel well!
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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*



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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.
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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*
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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.

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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.
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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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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.
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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*
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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.
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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*

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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.....
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Thank you SO much for all your help.  The last link you sent was VERY informative.  I couldn't see how old it was, but it was very interesting and helpful!  

I appreciate you sending the links.  Take care, and I hope you feel well soon!

Momzilla*
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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...?
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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*
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Your welcome.
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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
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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*
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Thats ok she has really helped me. when i have more time and you maybe we can swap sx lol and come up with something as we both in limbo land!!

Its firework night over here guy folks night, and my dog is driving me mad she hates them and is shaking and panting lol poor thing trouble is it goes on all week every year seems to be longer though i love the auterm or fall as it must be in the USA, its my fav time of year roasting chesnuts marshmellows, we are doing a small one here as i cant get to a big display this year and the kids are still young so they still like the little pretty ones.

Im off christmas shopping tomorrow doing the shopmobility and hiring a wheelchair at the mall, my friend is taking me so im really looking forward to it but it always tires me out but mentally its so good to get out!!

Take care
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Thanks both so much for the warm comments!!

I had a few other thoughts on MS and CFS and to the extent that they come out of my brain, I'm going to type them.  

- I remember the complicated case person that I mentioned telling me that in her MS wanderings she'd come across other people that had crossover symptoms.  That's why I developed an picture on that there are people who seem to be a mix.  Don't know if it's true though?

- I vaguely remember that you can have lesions with CFS as well as with MS.  For disablity I remember it being listed as something to include for CFS paperwork if you have it.  Also, when I had an MRI my doctor hesitated, he worried that stuff almost always often shows up, and one can spend huge energy trying to figure out something that isn't very important in the big picture.  I don't know if by stuff he meant MS style lesions because I wasn't listening that closely but he used the word "spots".

- Maybe the combination isn't MS and CFS...  Maybe it's MS and one of the dysautonomias.  The dysautos can cause a lot of symptoms that are part of the CFS package.  They can be triggered in a prone person.  So, maybe it's not two contradicting autoimmune style illnesses.  Maybe it's just MS, with an add on illnesses - that tends to add itself onto things.  This is a complicated thought that I haven't seen any place, and Zilla, you're not going to know what I mean until you've had time to do more research and understanding of the dyautonomias.  It's worth tucking aside until later when you've had a chance to get more data to assess it.

Uk2
"I read somewhere that MS.FM and CFS in france are treated as the same illnesses "  That's very interesting.  If it's true it's so different than the rest of the world, and well worth knowing.  

I'll talk to you soon!  I'm trying to clean up from all the time spend car "not-shopping".  I'm getting good at it though.  I love fireworks.  Is it a holiday I've never heard of?  My sister's dog had the same opinion when she was a year old.  She got so scared and bolted that it took hours to find her in some local woods - looking completely forelone and terrified.  (If stress causes CFS that dog should have been sick for life.  She isn't.)

It's been a long day - so hope you are both good.  - Curls.
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Iv also heard that there can be lessions in CFS and that it effects the CNS. Yes the france thing is interesting i cant remember where i read it but ill try and find out.

Guy Folks night is a British tradition celebrating the stopping of the british parliment being blown up centrys ago if it had gone right it would of been like 7/7/7 so everyyear a guy ( fake clothes stuffed with straw) and put on the bonfire and people let off fireworks to celebrate his down fall but more and more its just fire work night not so many guys anymore or bonfires!!  i used to love as a kid gathering old clothes hats stuffing it with straw and seeing dad tie him up there it was fun!!  anyway iv gone on enough.

have a good day.
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Yes, we should swap war stories from Limboland!  Let me get a little rest and we will!  I'm sure everyone here feels the same way, don't we?  

You know, one of my dearest first boyfriends was from Dover, Kent.  Is that anywhere near where you are ?  I knew hin from college, an exchange program -- was sobbing for weeks when he went back.  Boo hoo.  Philip.  Wonderful person.  Had to get over a communication gap when we first hooked up,  So funny.  He's written a book on theatre since.  Wonderful man.  And now a psychologist, I heard.  Boy, am I old.  Or else the men I date need therapy.  Not a good sign....

Feel weel, uk2!

Zilla*  
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Hi,

Hope your well, though i think from a posting on the MS site your doing to good i did post you on there too.

I grew up in Kent and have been to dover many a time. I think he must of needed therapy for losing a great girl and went in to psychologia to figue the pain out lol

Take Care

Samantha
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Thanks for the pm.  Doubt I'll get a chance to read it any time soon.  I'm sorry.
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