Iv been posting on the MS site for a while as my sx closly matched what some people on there wer feeling but yesterday i received a clear MRI of the head and spine (not done with contrast though) Im in the UK by the way and on the NHS so things are abit slow here. My consultant is sending me to a hospital in london for a day of testing including a LP and a emg, and is doing another MRI of the pelvis to check the nerves there.
Im now thinking it cant be MS with clear MRI and so im at a loss to what it is? and not once has anyone thought it could be fibro but could it?
My sx have been on and off since the birth of my second child mild sx like weakness in legs pins and needles but worse since Jan this year balance problems back ache leg weaknes which i put down to a car crash i had in Nov last year (but MRI say clear on my spine.)
In may this year i come down with awfull muscle spasms which i could not eat,walk which lasted for one week then went then came back less, i was on crutches but have felt better since and walking without now.
I still have nerve pain and burning in my arms, legs and ankle and feet but lyrica 375mg a day has helped with this.
I cant do anything more then cope in the house with my three children i cant walk anywhere too far as it causes me pain (like a heavyness burning like iv done a work out) and stabbing pains in my hips and thighs.
Iv had IBS for years and my bowel problem is worse of late, iv been off work now for 4 months sick and fed up.My brain just does not work right i get blurred vision and focus problems and i ache so much on cold days yet heat makes my sx worse too.
lyrica has helped me maintain a life away from the sofa and back into the land of the living but i just want a answer to why i feel like this.
Hi, Along with what I posted in the other post, if you check the cfids.org and cdc's website, to look for all the rule out things that are tested before diagnosising CFS... There are all sorts of things, and you do want to be sure it's not one of them before falling back on a CFS diagnosis. You have a lot of CFS symptoms and it could be a classic case, but what you are describing could be something else too so 1st do the rule out.
it really still sounds like ms mor than fibro. especially with the vision problem, and balance etc. my sister had the symptoms too for years and is now nearly blind (being treated for uv-itis only for years) but up until now (and she is now 62) she similar tests as you. as of late now the brain scan shows the scaring and it was actually a spinal tap that diagnosed this. You mentioned the mri on spine but did you actually get the spinal tap done for ms testing? this is what confirmed it for her.
FYI, blurred vision and balance problems, and things bouncing around, or appearing to move unexpectedly in space, are very common in CFS. Do you have a heaviness in your arms and legs like they are so heavy to move, which is typical to CFS? It can be triggered by childbirth although that's not the most common trigger which is post-virally, but it happens. Fibro and CFS are a little different. I found only a few neuro even knew about Fibro and none thought about CFS. Are they not considering it because you don't fit, or because they don't diagnosis it? (You probably know, in England CFS is called ME...)
For the muscle spasms, make sure you are getting enough magnesium. Also calcium (but for me the calcium vitamins trigger the CFS).
One sure fire way to know it's not MS is if you take the MS drugs because the doc's decide to try them on you, and you have unusual reactions for MS which would make more sense if you have CFS. I know one person who had that experience with an unclear illness that strattled the two conditions and finally focused on CFS treatments and is doing much better.
Iv been having odd nerve and muscle pain mildly for six years till May this year i was able to keep a job down my problem got worse after i had a car crash in nov 2006 i put all my problems down to my crash but it was my chrio who wrote to my GP to tell her she thought there was something else going on so i got refered to a neuro who ordered a MRI which was a 3 month waitng list in the mean time i came down with awfull muscle spasms that i could not walk or feed myself this repeated itself twice and took me a month to get over both inbetween there were all sort of neuro things going on they put me on lyrica 375mg and that seemed to calmed things i got my MRI results and it was clear so they are sending me to a specialist hospital in london for the LP and EMG to rule other things out. This weekend i again came down with a flu like feeling getting so bad it spread through my body my arms hands legs i could not even lift my head nerve pain in patches over my body where i could not stand to be touched with even clothes the pain has eased now down to a flu like feeling again my arms burn when i try to use them and i cant stand for long i have been in bed for 2 days!!
I take vit b12 and magnesium tablets.
None of the doctors has mentioned fibro but i guess they will rule out all other things that effect the CNS first and nerve system out of the CNS.
Iv been off work for 4 months and getting in debt i so want to know whats wrong so i can help myself more too and get the right treatment.
I feel for your journey. You are not alone in going through this...as you know from your searches and reading this forum.
I continue to get my first impression. You symptoms can be something else and the rule out is critical - which you are actively doing. You fit the CFS/FM profile to a tee. The burning, skin contact pain with clothes, flu like, can't stand, are all classic symptoms of CFS. FM of course can overlap CFS with pain being more prevalent. I'm not sure what you mean by nerve pain, but that can be an FM/CFS thing. My nerves definitely no longer feel or act normally, but nerve pain it's the word I use for it, so maybe you are describing something different. (I do get what I call "bone pain" in my palms.) CFS patients have often had nerve conduction tests that turn out norm, but were requested for a reason. There are doctor exam tests that would make they think of MS, so maybe that's worth asking about.
One thing comes to mind that might help distinguish CFS/FM and MS, is the blurred vision. In MS there's a particular, specific type of vision problem (that can lead to blindness as soulwise unfortunately described for her sister) and has a name and is detectable by doctors. That problem can exist in CFS, however it's not the usual blurred vision of CFS. I'll try to describe the CFS/FM one. Letters while reading or looking at a distance jump vertically with the alignment not seeming to work. The blurred is very similiar to needing a new perscription for near sightness and is also a lot like the hazy, disconnected vision one has with a virus/flu. Sometimes it includes things seeming to jump around, and reading being very hard to follow the lines and concentrate.
For treatments, I described food adjustments to Debnsc in "What Else Can I Do?" I rambled a bit, but I'm not going to try to repeat it here. If you have sensitivties, it might well help for you. Which might give you a chance to feel better and deal with this a little. I mentioned magnesium only because I went through a few bouts of head to toe muscle spasms and it was recommended by others and works for me. More recently I've found the magnesium gluconate adds an additional edge of improvement. The max amount I've found is 30mg and I've found it at Puritan's Pride (online) and GNC (mixed with regular magnes).
I hope you find out what's going on soon. All the best!!
Thank you for anwersing my questions you have really helped when i have felt abit lost in all this.
Iv come out of what i call a flare from friday 6pm till sunday afternoon i was in bed this has happened 3 time this last few months inbetween my flares i get good and bad days, in a flare i get flu like sx burning in my muscles pain in my muscles to the fact i cant even lay down as my body hurts so much!! and im not a wimp when it comes to pain my spinal block wore off in the middle of my c section and i could feel everything i did not want to go under till the baby was out so the pain was unreal!!! as they were still cutting me (very stubborn).
The nerve pain is like a stabbing/stinging or electric type pain, i also get nerve pain where i cant bare for it to be touched that always happens on my arms hands and rib area.
At the moment i am feeeling a constant buzzing on the side of my head and around my body in differnet areas my body feels tired but i dont if that makes sence.
I cant seem to focus on words they jump about my eyes feel they jerk all the time i dont get headache and had my eyes tested and they are fine.
I can only cope with picking kids up and staying in the house i cant walk far without great pain in my muscle around my left hip and ankle and ill suffer for days afterwards. On a good day i can cope with the household stuff but anything past that is impossible i get my words wrong i cant think straight its effecting every part of my life marriage finance as i cant work. (been off 4 months now)
I feel i have Fibro but i also have alot of sx out of fibro i dont feel i have cfs as im not tired and dont sleep that much i go to bed cause of pain and i sleep as when i sleep im not in pain im abit hypo at the moment but my lyrica drug makes me abit like that.I guess the LP will prove if there is anything effecting the CNS and the EMG i think will see if its out of the CNS.
I dont think my magnesium tablets are high enough as the cramps in my hands and feet are still there, i cant aford anything other then over the counter tablets.
Sorry i have gone on so much.
When were you dx? and how do you cope? did you have all the MRI and LP EMG done?
I'm sorry to hear what you are going through. And, it is all familar.
I'm going to switch gears and assume you have FM/CMS, and focus on what you can do from here. ...Since, I don't know a lot about the rule out conditions, and your doctor's will have to test for them. As an aside, do make sure to ask about Lyme as well from tick bits, whether or not you live in a high risk area. The Western Blot is the only good test for it and it's tricky, so finding an infectious diseases or neuro who's familar with it is helpful. It can look a lot like FM.
The good news is that with sudden onset types it usually hits very bad, and then over time you really can figure out ways to help and function much better. It's the opposite of other illnesses. This is one thing you can tell your husband that might make it easier for him to cope, also it's helpful if he can help you with the research it...?
The electrical pain, and tired body parts, and eyes jumping are good descriptions of symptoms I've experienced and are common. I wouldn't get too hung up on the fatigue. In England where it's called ME not CFS, they don't require fatigue in the definitive the same way as in the U.S. It's an ongoing conflict amoungst international researchers. Much more definitive is the post exercise reaction within a day or two, and the types of cognitive problems you're describing. CFS/FM are extremely similar, but do respond to a few areas differently, so you'll have to pick what works for you.
To get started:
1. Early in onset studies have shown that hospitialized more serious cases have a better long term prognosis. The theory is that they receive IV fluids and lots of rest and less "is this real" stress. Most CFS patients test as low in total blood volume (not the usual checkup test for ratio). So, if your doctor's are will to try IV fluids it might be a good idea. The downside is risk of infection and complications, which are serious, so it's a doctor's call. Sometimes later CFS patients use IV treatments for a while and it does get them jump started into improvements. This is theory on my part, but not part of a standard treatment at this point - but that's because no one diagnosises this quickly enough to think about what to do in the first year! I got it from researcher's suggestions that I've read.
2. I've noticed that for around 70% of patients, food elimination helps a lot. I described it in that other post to Debnsc. Also adjusting vitamins and drugs to exclude the ones that trigger it and add what helps. CFS/FM patients are often hypersensitive so what seems like no big deal, and shouldn't be a big deal to one's body, can make a difference.
3. Very likely you have a dysautonomia. Using the behavior adjustments, as simple as they sound, can make a difference. I think I included the key words earlier. Along with dysautonomia, there's the low total blood volume. The test isn't easy to come by since it's a nuclear test that only some major hospitals offer. But it's not necessary since the treatments are the same behavior things as the dsyautonomia. Dr. David Bell was the one who figured it out. Dr. Peter Rowe was the big initial dsyauto researcher.
4. If you can't work at least for now, you might consider disablity. I don't have time to type more now and I think I wrote some on that other post again. It's hard to do emotionally, but it can also help cope with what's going on.
The puritan pride vitamins are cheap and decent. They offer 70% off their listed prices and fee shipping from one of their links. I have the link someplace, but it comes up with googling (it's the third or forth one on the results page).
There's some thoughts. Hope it helps. I'll post about my experiences when I have more time! It really does generally get better from here!
Thank you so much for time to type all that. Its much to think about.I have thought about the lymes but im in the uk so i think its unlikey though i have been to america several times.
Im not sure how i would get these blood treatment/test you talk about im NHS and i dont seem to have any say in what goes on i didnt even see my MRI or bllod work but neither did i ask the consultant scares me.
I will get the vitamins you talk of and iv tried to improve my diet i also when feeling well do my streatching exercises which helped me on the first bad bout in may get me off my crutches.
m seeing my GP again next monday i was thinking of asking for some physio and a referal to a pain clinic she was not wanting to she saw the MRI which is clear even though i have more test to come.
what i and others around me cant understand is how i can feel so well one day then come down with this then for it all to go away the next (there is always some form of pain and i cant go far but im not in bed!!) it is so odd, if i know for sure what it is i can research it and get the right treatment but not knowing is awfull!!!
Thanks for the info i have much to read. when you have time one day i would love to read your story.
Your description of feeling good one day and awful the next is my typical pattern of fibro. I have been diagnosed with it for approx 10 years. Process of elemination. Plus the typical pattern of trigger point pain. There are 16 points on body that are very painful with light pressure. I recently had a neurological exam, and 14 of the 16 were flared. The fog comes and goes. Caffiene isn't good for fibro pts, among other things. I have never tried an elimination diet to help. But burning, pain that moves around the body is typical. I also have itchy/crawly sensations under my skin, that I itch until I leave raw marks. The problem with diagnosing fibro, is that it mimics other conditions also. I recently had a herniated disc removed and my neck fused. I have degenerative osteoarthritis, and type 2 diabetes, and carpal tunnel syndrome in both wrists. I have a lot of shoulder and hip pain. It's all I can do to work, and that's all I do. This past weekend, I was able to wash 2 loads of laundry, and that was it. Sometimes the energy is just not there, and depression plays a part too. Stress also jump starts flares. A good rheumatiolgist should be able to check your trigger points, and differentiate between CFS or fibro/ but many patients have both. Good luck, please keep us posted on how you are doing. Getting a diagnosis is the first step. And believe me, you are NOT crazy, nor is it ALL IN YOUR HEAD. As many of us have been told for years LOL. God Bless
The points you made about the pain travelling around my body makes so much sense to me i have a constant muscle problem that goes from my hip around my leg to my buttocks and my foot and pain that travels around my body most days but then ill go down with a flare usually 2-3 days where my whole body hurts and burns just lifting my head hurts, im now coming out of my most recent flare and my arms are still heavy every flare i get i another part of my body seems to suffer and stay weak.
I guess i have to go through all these test to find out its not some of the other things but sometimes i wish someone would give me a idea of what is going on here maybe it would be better for me to see a rheu doc and see if she can dx me but im nhs and not sure she would do this as with a neuro at the moment.
Hi, I haven't forgotten about coming back and talking some more. I've been distracted by the holidays (which were very nice). I'm poor at writing concisely so I'm sure this will be too long, but better long than not at all!
My story is around 10 years ago I got a nasty odd virus that had symptoms like shooting pains up my arms, and inflamation in places that'd been injured many years before, and wouldn't go away. I got it from my mom and she had some of the odd symptoms too. It'd improve when I slept but I was starting a new job and pushed. My mom slept for the three months and is mostly well. About 4 months in after I seemed to be improving, I tried an experimental treatment, magnesium push of vitamins. That did me in and two days later the CFS hit. The big difference is the "umphf" was gone, I felt drained deep inside and like something was seriously wrong, and sleep didn't help it. I was sleeping 18 hours a day, painfully tired when not sleeping. Physically in head to toe body
pain - stabbing, burning, spasms. Cognitive problems - getting lost on way to work, unable to think or remember words. Muscle fatigue - unable to walk 10 feet without resting, open a door with hands, hold a pencil or a phone.
Vision a mess, super blurred, jumpy, like I had a fever. And so on and so on.
Diagnosed fairly quickly by an infectious disease doctor familar with CFS, but not given enough info. I worked for another 5 months part-time and barely did anything on the job (much as I tried to).
I've slowly improved since then. Part of it is finding things that help. Part of it is allowing myself to be limited and not getting into the push and crash cycle that many people do. At first I went from bed to couch and a trip to
the kitchen (10 ft away) was a big deal. I'm not well or fully functioning at normal levels, but it's worlds of difference.
After a year, in a support group we asked the question "what's helped you the most" and I noticed almost all the answers had to do with some kind of food adjustment. Different adjustments, but about food. I've since asked
people details when they've improved and noticed - about 70% of CFS people response very well to eliminating foods. And most times when someone's improved one of things they did was eliminate a food. It's not always
obvious from their descriptions. For instance, fellow went to alternative CFS specialist and felt better. He was taking a few alternative herbs, but when I asked more he mentioned he also had eliminated dairy for the 1st time.
So I dragged myself to health food store and bought stuff to cut out several foods. Turns out for me eggs, dairy are huge. By not eating them, was the biggest change. Took easily 6 months to see full improvements. I've played
with other foods too, which I won't go into. Turns out Hopkins recommends trying elimination of dairy, and if that doesn't do anything, egg, and if that doesn't help, soy. I find people respond to a wider range than that which
includes all the typical allergin foods, some unusual foods, artifical sweetners, msg, yeast diet, non-organic stuff. Which ones work for you depends on you. You have to try eliminating and see. Eventually I stopped my calcium
pill and found it really helped to. (Some vitamins trigger me: CQ10, Iron.)
It's not just about eating healthy!!!! It's about eliminating something completely from your diet and seeing if it makes a slight difference over a couple weeks time! Symptoms aren't stomach, it's an overall thing. My first week was "gee I think I'm turning a corner, I seem to be slightly less sick by just a little."
I also worked up on walking. Started at 1 minute a day (it was short walk!), and worked up to 30 minutes every other day - took over 5 years to work up to it gradually. Helps me a lot with sleep quality. Getting over the aerobic stage of 22 minutes was the very hardest. I rest for solid 30 minute afterward.
For the NHM which I test positive for, and the low blood volume, I used Hopkins recommendations which include: keep feet elevated, don't stand up still, don't exercise past your trigger point, luke warm not hot showers (draws blood to extremities and feels good but then rebounds and you feel worse the next day), drink lots of water (to increase blood volume), wiggle (sitting too still can trigger it). They recommend salt and there are some drugs you can try, but salt didn't work out for me. Mostly you have to learn what your "trigger" signs are and know to stop or change. For instance, I get slight chest pains early on when I'm standing or exercising and it's going to be too much - so I stop (sit down). I sit in the oddist of places - better embarrassed, than in bed for a week.
I also sleep in shifts and plan for it. If I sleep for 5 hours and awaken, then finally get sleepy again a few hours later, I first go back to sleep and finish my nights sleep of 3 more hours. It's a pain in the neck, but it hugely helps
keep my symptoms down. The whole thing seems to be a spiral upward, or spiral downward game. I find pushing through increases my pain, muscle fatigue, blurred vision, cognitive function, immune reaction (sore throat) and
the worse is shortness of breath. After I push while tired, it takes a couple days to feel better again, so it's worth it to me to try to avoid it.
I take about 100% RDA vitamins of the ones I can tolerate, a multi, magnesium, vit e, vit c, biotin (helps), chromium picolate. I think it would be good but I can't take CQ10, or iron. I'm hyperreactive to meds and herbs
(that's typical for CFS), so I don't take anything else. My list of reactions to drugs reads like a comic book. I also won't take anything that helps a little, but makes me worse in another way. If they can't fix it I want to give my
body a chance to do what it can without getting it sick with stuff I take.
I tried a number of alternative treatments such as accupuncture, and herbs, more than I care to think about. However, nothing was really all that helpful and some of it was harmful. For some people something will be the
magic help, so you have to try what makes sense to you, AND be very cautious about everything. Ask lots of detailed questions, and don't be afraid to walk away from the "miracle cure". If there was one - there wouldn't be
Some people focus on treatments that help with elevated virus titers. With CFS people seem to be suspectable to increased virus titers for EBV, HHV6, and to all sorts of viruses, funguses, worms, and whatever. For people with these, (mostly alternative) treatments that target them, will often help symptoms.
've done therapy on a problem that was bothering, and I think reducing the stress from that has helped too. (This illness is very literally stress sensitive, particularly ongoing stressors or prior ones that were long term.)
In the last couple years I've finally been seeing spontaneous improvements, rather than just improvement related to treatments I've tried, so I'm feeling optimistic.
As an aside, I've noticed that grouping my symptoms helps reduce the "deer struck in headlights" look that some doctors give. My catagories are: 1. NMH legs elevated blood pressure stuff inclluding fatigue 2. muscular fatigue/weakness 3. cognitive problems (which can be severe) 4. pain of all sorts 5. hypersentivity to everything from food and drugs to environmental stimuli. Many doctors aren't knowledgeable and aren't that nice about it. I leave, cry, and avoid them.
Oh, and for me motrin as a blood thinner helps me avoid crashes. If it take it after overdueing but before the crash that starts 6 hours later, it can help reduce the severity. Blood thinners help with viscosity of blood which helps part of the CFS problem.
I should add that in the couple years before onset, I'd started seeing some odd low level problems that were mostly completely dismissable. The big one was I'd started getting low fevers with colds and not recovering for a couple months, when I used to get high fevers and take longer than other people - by days, not months. I'd always gotten sick easily, and I brusied easily (which turns out to be related to elhers-danos which is related to NMH which is related to CFS.)
There's so much for you to learn. I've described only a few things out of all that's out there that helps, believe it or not. As you can see, there is a lot that can help you - so don't give up or give into being frustrated! You just have
to go through the stages of getting diagnosed, and trying out things to find what works for you, & dealing with the emotional overwhelm of it.
People who get treatment early have a better long term prognosis, so you might well, do better than I have!
I'm sorry this is so very long. I didn't mean to bore you. If there's a specific question you'd like a concise answer to, let me know!
You didnt bore me i admire your positive approch to your illness and feel for your earlier days you had not dx.
What is NMH? i bruise easily and have always been ill with this and that i had gladular fever for a year!!
I used to get mouth ulcers but iv found B12 stops that and im eating better since iv been ill and at home when i worked before i skiped meals i have three kids so it was very stressfull but i feel worse now!
I do know that if i do too much i suffer then or later as in i get the nerve pain or muscle pain but i cant connect the flares where i go down for days and weeks.
Im not sensitive to meds at all never have been infact i have the opposite trouble they just dont effect me and i have to take larger does same with drink till recent when i cant drink at all makes me ill now!!
Once iv got a dx i like you shall reasearch alot im not one to sit about not doing anything thats why i get so frustrated with the NHS and the waiting.
I cant seem to shake this flare the last two( after the first month long ones) they have gone as quick as they came but this one has left me with tightenings all over my body and night spasms and so much pain i cant lay or sit for more then five miniutes. The doctor has given me diazapam and quinine tablets to help but it does not help during the day im on lyrica 375mg a day but thats not helping.
My jaw is really tense and it clicks and pops infact my whole body is tense and if i use it it cramps!!
Will my neuro be able to dx fibro? or will i need a rheumoid consultant? should i push my doc to refer me to a rheumoid appointment as i guess it will be months for that.
"i cant drink at all makes me ill now!!" Another classic CFS/FM symptom. I fear I have to say welcome to the club :). It sounds like a key for you right now is to figure out the triggers for the flares, and to do what you can for the muscle spasms. Those don't have to wait for a dx for you to be able to impact them, which is good.
NMH is neurally mediated hypotension. It and POTS (Postural Orthostatic Tachycardia Syndrome) are common Dsyautonomias in CFS/FM patients. Dsyautonomias are often also called Orthostatic Intolerance. For the NMH it means that one's blood pressure doesn't stay up properly. After standing still it drops suddenly at least 40 points. What's amazing, is that it doesn't feel like a specific drop - it effects overall function altogether. It triggers a wide range of symptoms including system-wide intense pain, cognitive problems, emotional reactions (people will cry when they aren't sad during the test, or get angry and yell), and many others of the CFS/FM symptoms. POTS is similar but includes more heart racing (I'm not very familar with it specifically.) These occur in 70-90% of patients. If you become aware of it in your body, you can learn the signals and minimize it triggering, which can improve overall wellness. The classic test for it is tilt table, and Dr. Peter Rowe at Hopkins did much of the initial discovery. There are some drugs used, but with my hyperreactiveness we didn't even try. The drugs aren't effective in many people, but if they work for you it can be great.
Later Dr. David Bell and Dr. Streeten discovered that 70-90% of CFS patients have low total blood mass. The CBC tests only for ratio, not total volume. I tested as 30% low, i.e. a few quarts short. Replacing it doesn't work, the body just gets rid of it again. However, all the salt and increased fluid/water, orally, and when IVs are used, are about increasing this. These also help with the dysautonmia.
A key picture of the dysautonomias is that they've discovered that the blood is pooling in the legs and stomach, rather than circulating correctly. Probably because the adrenaline isn't correct which is part of the function of the autonomic system. (Hence the name, dsyautonomia.) So, standing still is a trigger for NHM and POTS. When walking, the blood is pumped by the leg muscles, so it's less of a problem. However, too much exercise (and it doesn't take much to get there) and again, the autonomic system problems reek havic, triggering the NHM.
Elhers Danos is a hyperflexibilty syndrome where some of you're joints flex more than the norm. For me it's not many joints, and I don't give a flexiblity appearence. However, it includes flexible veins, which allows for blood pooling and is coorelated with having NHM. Along with flexible veins it includes flexible collage (or something) that results in easy bruising, sometimes with hard to heal wounds. There are version of E-D that are more serious and different than what a CFS/FM patient will get, as well, so dont' get confused by them when you google.
Along with all of this is significant evidence that the HPA - hypothalumas, pituitary, adrenal axis in the body is not functioning correctly and a key piece to what's wrong with the autonomic system. This axis is also hooked into the intestines, and adds to why the stomach problems, IBS, are common with these illnesses.
This is all a bit of a fuzzy field. Research has proven the existence of these itmes, but not gotten enough data for a full, sensible explaination to emerge.
And then there's all the immune system abnormalities research. Dr. Nancy Klimas in florida is the name to google.
For muscle spasms, again, I'd point to calcium and magnesium and a balance between them in your body, as helpful. It's a matter of playing.
For diagnosis, the most common for CFS is an Infectious Diseases doctor, a good primary care. Or occasionally a rheumotologist but they usually will only say FM. For FM the most common is a rheumotologist. You might was well set up the appt.. Neuroglists vary the most. Some know about CFS/FM, but most don't seem to and get lost when it's not MS. The key is finding someone who's familar with it... I don't know how you'd work that in NHS. There is a whole network of FM or CFS support groups around London with some web pages, that I found googling. Maybe contacts there can help you. I wrote to them once about a practicioner who moved here and got a helpful answer. This forum doesn't seem busy enough to get those answers here. I also got diagnosed by an allergist/immune system researcher specialist. For E-D it's a genetic condition (in theory) so a genetic doctor is it.
I just noticed you're comment that "i had gladular fever for a year". Did you actually get mono or did you get this and it looked like mono? About 10% of mono cases, go onto to become CFS. Yipes, again, welcome to the club. There's an english doctor who did the research in it and those were the results. I kept missing what you were saying because we call gladular fever, mono, here.
Well, I better go take my "nap" to finish from my night's sleep. My sister laughed at me when I first started using that word. Her point being that two or three hours of sleep...is not a "nap".
I have MS. I totally understand why you feel that you may NOT have MS because the lack of lesions or at least ones that show without the contrast dye. It IS possible to have MS and NOT have any lesions that appear. As MS progresses the lesions will eventually show. Of course, I hope that you do NOT have MS.
I also have Fibro. Seems like alot of people that I know that have MS, also have Fibro. In my case, I have six lesions in my brain and one in my spinal cord. They show up, with or without contrast dye. Of course you may know, that if they "light" up with contrast dye, these are "active" lesions and means that you are in the middle of a flair-up. The ones of mine that show up regardless of contrast seem to be areas that have been permanently damaged from the MS.
The best way to really know what is going on, is a spinal tap. Despite having all the lesions I do have, my Neuro would NOT diagnose me with MS until my spinal fluid showed the "banding" that typically shows in the fluid of MS patients. It's typical of the inflammation in the Central Nervous System of MS patients.
If you would like to discuss any of your concerns any further, I would be glad to answer any and all questions that I can. I always feel that your doctor, is the best one to ask, though. I was diagnosed with MS, 12 years ago and despite chronic pain in my legs, probably due to the lesion in my spine, I seem to get along quite well. MS is definitely NOT a death sentence.
Thanks so much for your replys. I too feel this is more FM then anyhting due to the constant flares and constant pain. I was tested positive for Mono as you call it glandular fever as we call it and was ill for a year and suffered health wise for a while afterwardsI will ask my doctor if i can be refered to a rheumoid doctor i have seen one before two years ago for muscle weakness and knee pain.
I will try and see what i have been tested for blood wise and also get something else for these muscle spasms.
The point you made about the blood pooling makes sense with the fact my muscle spasms are at worse on rest but saying that it burns for me to use them too much so that ties in with what you were saying.
I am trying to see when the flares come but there just does not seem to be a answer to it i cant plan my life at all and have to just go with the good days which are never that great either!!
I feel trapped in a illness that none of my friends family or doctor understands, its hard not living and waiting for a answer when thats all i want.
Anyway iv vented too much sorry. Enjoy your nap and take care.
I guess the LP and EMG will give me some final answers though im not looking looking forward to the test.
I dont want it to be MS but i want a answer so i can get treatment and know where i am.
I also know MS is not a death sentence my friend has had MS for 10 years and she is well better then me lol.
Did you firsly have clear MRI? before you got dx and how did you get dx for fibro?
One more ticket for this trip…
Reading all your comments it seems it is me who wrote them.
For five years I have been seen several physicians to tell me that I have nothing wrong, but I can not sleep at night because of legs and arms paresthesias or paralysis, back pains all around with not a fixed point hurting, terrible morning stiffness that I relief with a very hot shower, fall to ground while walking or going down a stair, tingling in feet and hands, feeling cool or heat when is opposite, blurred vision and some blindness episodes. I have bought SFC, MS, FM and ankylosing spondylitis books at amazon.com to start to look for myself what’s going on, as I get no answers.
I can only say that the classic formula antidepressant-sleep pills and NSAISs (diclofenac) got me worst, and destroyed my intestines. The only times I got well was when I tried the glucosamina sulfate for a year, I was OK. But as I read about ankylosing spondylitis and the morning stiffness signature as the final prove of it, I decided to went for a rheumatologist expertise in the field, who told me to stop glucosamine and start the NSAIDs treatment as soon as possible because my bones would be stacked starting in the sacral. After several X-rays and scans of the sacral area (I´m green of radiation like Homer Simpson…) two years of seen this expertise and getting worse in the symptoms he finally said I got not a trace of any spondylitis.
Right now I´m wating for a complete MRI scan results I had Oct/9, I had to beg and beg for it for as the doc´s say it was good for nothing.
Besides I started glucosamina again, after seeing in the Internet lots of web pages about glyconutrients, that are good for FM and MS.
Pablo from Uruguay…
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