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Wondering if I might have MS. Undiagnosed symptoms.

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Posted Yesterday 3:34 AM (GMT 0)
I'm hoping I might be able to get some advice or some thoughts. I've been trying to find out what's been causing nearly 3 months solid of symptoms, but no luck so far...test after test from specialists and GP is negative.

I have joint aches all over, especially in my knees, but without any obvious inflammation. Sometimes the pain is bad enough that I can barely climb stairs at night. I also get some stiffness in my knees as well, sometimes they feel weak. I get sore muscles, too, but to a lesser degree. I have a lot of trouble with fatigue, some days being completely exhausted at the end of work, or waking up after 8+ hours of sleep and feeling like I haven't slept. It's not always that bad, but I'm tired almost all the time.

I also get tingling sensations, especially in my feet, my left arm, and my face. My face comes with redness, and it sometimes progresses to numbness. Caffeine may make it worse, but it only seems to be loosely related. I experience "brain fog" and poor memory, too. I just can't concentrate on things as well as normal, can't do mentally taxing activities for as long as normal, and despite making more lists and relying more on my phone's calendar reminders, I keep forgetting things.

I'm having trouble at work as a result (I also am very unhappy with my job and want to get into a different line of work), and have trouble keeping up with stuff at home.

I have Crohn's disease (diagnosed July 2012), and I seem to have just entered into a flare in the past week or two despite medications...otherwise it has been pretty well controlled. I also have migraines (also since 2012 and glaucoma in my left eye (deformation of optic nerve found this summer). I had Lyme disease in the spring and was treated, but I've been tested 4-5 times since then, with 3 different types of tests, and tested for co-infections, all negative. It was a bad infection, with neurological and cognitive symptoms, so I wonder if it may have done some lasting damage.

I've had blood tests for rheumatoid factors, Sjorgensen's, indicators of Lupus, thyroid function, other organ functions. Results have been normal/negative. I'm getting expecting new blood results on thyroid, CBC, vitamins, and I think indications of function. I've been deficient on vit D before, but I've been taking a strong supplement since then.

I've noticed some things have a similarity to MS, but I don't know much more about it. Doctors haven't really said "no," but they don't seem inclined to do more testing on that so far, and I realize that it can get invasive. Chronic Fatigue seems like another likely cause, maybe Fibromyalgia, but I don't seem to have the tender points. There's also a chance that it's all just related to my Crohn's disease (that started acting up in the past couple of weeks). I'm just not sure what to do at this point.
Posted Yesterday 3:38 AM (GMT 0)
Also just thought to add, I've had an MRI because of the migraines, and it showed some spots...which while unusual for someone my age, is not unusual for someone with migraines, regardless of age.
Posted Yesterday 3:48 AM (GMT 0)
I'm sorry you find yourself so ill. Your symptoms sound really awful. Not finding answers is a terrible place to be. In all that testing, did you get a brain MRI? That is the place most doctors start when trying to rule in or rule out MS.

I am concerned that you have had Lyme disease. It is very possible that that is causing you to be sick again. Lyme is very tricky. It can hide and tests can negative but it's still Lyme. The knee pain and stiffness is a classic Lyme symptom; it is not an MS symptoms. Joint pain in general is not typical for MS.

You may want to post your story on the Lyme board. It is very active and supportive. You are also very welcome here. Ask an questions you may have. Keep us posted.
Posted Yesterday 3:51 AM (GMT 0)
Oops. You must have posted the MRI as I was writing. Lyme, migraines and MS can all cause spots or lesions. You may want a second opinion on the reading of the MRI. Just a thought.
Posted Yesterday 4:06 AM (GMT 0)
My first suspicion with my symptoms was that the lyme hadn't been cleared up. I got treated twice, in fact, and did have improvement, but the first time it really didn't last. Second time I felt better for a while. But when this started happening, I got retested, it came up negative, GP felt lyme was highly unlikely, so I went to a lyme specialist to be sure. He did different lyme tests (better ones), but those were negative, too, and even he felt it was unlikely that I still have active lyme.

I was pretty sure the joint aches didn't really fit, but I read something about that being a secondary symptom. I lack inflammation in the joints, which should be present in almost every condition I've looked into, even lyme.

I was never really sure about whether or not lyme could cause any sorts of lesions. That could also suggest maybe it has done some lasting nerve damage for me, maybe other things? I'll hve to run that by the lyme board. My neuro had talked about possibly doing another MRI along the way to see if anything changes and how, so that would probably be in a couple of months.

I get odd new symptoms showing up along the way...occasional light sensitivity without a migraine, ringing in my ear, muscle twitches in an hand after circulation goes back to normal from leaning/laying on that arm the wrong way.
Posted Yesterday 3:08 PM (GMT 0)
You do seem to be experiencing some symptoms shared with MS. The thing is that MS has symptoms shared by many illnesses. That's what makes it so hard to diagnose.

One thing with MS is that most of the symptoms do not come and go. They come and stay. If they leave it is gradually over several weeks or months. I had a bout of MS related optic neuritis. I lost the color vision then over several days the functional vision in one eye. I was legally blind in that eye for about 4 months.

The symptoms MSers experience are directly related to the brain damage the disease has caused. For example: I have a large lesion on my cerebellum, and so I experience balance and vertigo issues. These never go away. When I am tired, sick or overheated I can get worse. I never get better.

I hope this information is helpful. I think your doctor's idea of a new MRI is a great idea. MS is progressive and so new lesions form and can help with the diagnosis. Other tests used with MS might be: a thorough neurological exam of reflexes and responses, evoked potentials (extremities, vision and hearing), a spinal MRI, extensive blood work and a lumbar puncture.
Posted Yesterday 4:24 PM (GMT 0)
It's definitely helpful. I think a lot of what I have read doesn't really address so clearly the situation of not knowing what the problem is for months. The light sensitivity, the ringing in the ears, those come and go. The light sensitivity particularly was just a few days, got checked by my optometrist, everything normal, and I've noticed very little of it since then.

I do seem to have some heat sensitivity...I tire out much faster and get foggy. But a friend who has chronic lyme has the same problem.

I'm also more sensitive to cold as it happens. My joints hurt more, very rapidly, and holding cold objects can get almost painful.
Posted Today 12:54 AM (GMT 0)
Joint pain can be associated with MS as a secondary symptom. It is related to asymmetrical gait issues. When one walks with a limp or uses a cane or a walker, joint pain can develop. This is more common in the hip and knee joints.

Heat intolerance is a common MS symptom. Cold intolerance can be a problem but typically to a lesser degree. It depends upon whether or not the patient suffers from muscle spasticity.

Do you think your doctor will do further testing?
Posted Today 1:36 AM (GMT 0)
Thanks for the explanation on the joint pain. I think mine probably comes from something else. Although I stumble a little more often than I used to, it's only something I've noticed, not a problem. Otherwise, I may limp from the pain, and the stiffness I get (which results in not bending my knees as far unless I think about it) seems to coincide with pain.

I'm not sure what to expect from my doctor at this point, but since this has gone on for so long...hopefully so. Maybe I can push for more.

I got my most recent bloodwork results, too, and as far as I can tell it's all normal. But I can at least rule out one or two things from that.
Posted 12/9/2014 6:38 PM (GMT 0)
Please avoid recruiting on the MS forum for Lyme or visa versa. This has been a problem in the past.

Thanks,

Peter
Posted 2/3/2015 2:22 AM (GMT 0)
I've had all over chronic pain for 6 years. Migraines for 20 years. Diagnosed with Fibro 5 years ago. Put on several meds. finally Cymbalta worked for a while. 2 years later dosage was increased. Few months later pain back with a vengeance. I've also been diagnosed with bulging lumbar discs. I've seen my GP several times. then saw a rheumatologist. I'm afraid to go back to see any more docs because I know they will think I'm nuts. I worked for a surgeon for many years so i know how that goes. Besides all over pain- it's worse in my legs and feet to the point that I hate to sit because standing up to walk again hurts so bad- I've recently developed a severe tenderness in my chest and upper back between shoulders. I had an MRI that was negative for lesions but I've talked to so many people that say it sounds like MS. My memory is shot. I can't concentrate. Can't finish anything I start. Have no motivation. Don't know if it's because of the pain or if it's just another symptom. Sometimes I think I'm losing my mind. I'm only 48. Not 148. What's going on with my screwed up body????
Posted 2/3/2015 2:16 PM (GMT 0)
Hi Popowifey,

Welcome to the MS board. I'm sorry you find yourself looking for answers! That's a frustrating and stressful place to be! Unfortunately with a negative MRI it doesn't look like you'll be diagnosed with MS. You could be in the very early stages; sometimes the lesions take a while to get large enough to show. There aren't many doctor who will diagnose without lesions.

For now, you are on a wait and watch pattern. This is a common situation for many who were eventually diagnosed. Your symptoms are disturbing and definitely causing a major issue in your quality of life! The problem with MS is that it shares symptoms with many other diseases and disorders. It takes many people a long time to get a diagnosis.

Keep us posted as to how you are doing. Ask as many questions as you'd like.
Posted 2/4/2015 7:14 AM (GMT 0)

elektrikhd said...
I'm hoping I might be able to get some advice or some thoughts. I've been trying to find out what's been causing nearly 3 months solid of symptoms, but no luck so far...test after test from specialists and GP is negative.

I have joint aches all over, especially in my knees, but without any obvious inflammation. Sometimes the pain is bad enough that I can barely climb stairs at night. I also get some stiffness in my knees as well, sometimes they feel weak. I get sore muscles, too, but to a lesser degree. I have a lot of trouble with fatigue, some days being completely exhausted at the end of work, or waking up after 8+ hours of sleep and feeling like I haven't slept. It's not always that bad, but I'm tired almost all the time.

I also get tingling sensations, especially in my feet, my left arm, and my face. My face comes with redness, and it sometimes progresses to numbness. Caffeine may make it worse, but it only seems to be loosely related. I experience "brain fog" and poor memory, too. I just can't concentrate on things as well as normal, can't do mentally taxing activities for as long as normal, and despite making more lists and relying more on my phone's calendar reminders, I keep forgetting things.

I'm having trouble at work as a result (I also am very unhappy with my job and want to get into a different line of work), and have trouble keeping up with stuff at home.

I have Crohn's disease (diagnosed July 2012), and I seem to have just entered into a flare in the past week or two despite medications...otherwise it has been pretty well controlled. I also have migraines (also since 2012 and glaucoma in my left eye (deformation of optic nerve found this summer). I had Lyme disease in the spring and was treated, but I've been tested 4-5 times since then, with 3 different types of tests, and tested for co-infections, all negative. It was a bad infection, with neurological and cognitive symptoms, so I wonder if it may have done some lasting damage.

I've had blood tests for rheumatoid factors, Sjorgensen's, indicators of Lupus, thyroid function, other organ functions. Results have been normal/negative. I'm getting expecting new blood results on thyroid, CBC, vitamins, and I think indications of function. I've been deficient on vit D before, but I've been taking a strong supplement since then.

I've noticed some things have a similarity to MS, but I don't know much more about it. Doctors haven't really said "no," but they don't seem inclined to do more testing on that so far, and I realize that it can get invasive. Chronic Fatigue seems like another likely cause, maybe Fibromyalgia, but I don't seem to have the tender points. There's also a chance that it's all just related to my Crohn's disease (that started acting up in the past couple of weeks). I'm just not sure what to do at this point.


SoUNDS more like lymes than MS, because you indicated you have it again, the lyme couldve went dormant in your body, or you were reinfected with lyme. MS also includes muscle weakness difficulty swallowing, strange walking gait.
Posted 2/8/2015 3:34 AM (GMT 0)
Thanks Gretchen for info. Right now I'm in that "I must be losing my mind" stage. Very frustrating. It's nice to know that I have a sounding board now. I try to explain to my husband how I feel and while he's sympathetic to my issues I sometimes feel as though he thinks I tend to exaggerate my symptoms. I have a very high tolerance for pain. Natural childbirth twice and I do not take pain meds unless I absolutely have to. I don't want to take pain meds. I want something to treat what's causing the pain and my other symptoms. I will be making another appt with my GP I guess. Hate to go back but what else can I do at this point?? I have good days and bad days. Bad days are spent on the couch with 3 heating pads feeling like I've been run over by a greyhound bus--TWICE!! Cold weather makes most of my symptoms worse it seems. I know that goes against MS. So I will continue as I am now. Dealing with it while trying to maintain my sanity. Easier said than done at times. But thanks again!!!!
Posted 2/8/2015 4:00 PM (GMT 0)
Hang in there. You are always welcome to post here. I'd love to hear how you are doing; good or bad. One thing you might want to consider is a spinal MRI. MS doesn't always show in the brain; on occasion it exists as spinal lesions.

It's something to consider anyway.
Posted 3/4/2015 6:53 PM (GMT 0)
[[I have joint aches all over, especially in my knees, but without any obvious inflammation. Sometimes the pain is bad enough that I can barely climb stairs at night.]]

Possible lyme disease or arthritis?

[[I have a lot of trouble with fatigue, some days being completely exhausted at the end of work, or waking up after 8+ hours of sleep and feeling like I haven't slept.]]

Possible sleep apnea?

[[I experience "brain fog" and poor memory, too. I just can't concentrate on things as well as normal, can't do mentally taxing activities for as long as normal, and despite making more lists and relying more on my phone's calendar reminders, I keep forgetting things.]]

"CAN BE" related to sleep apnea... You may want to research NOOTROPICS- Sulbutiamine... helps with brain fog, but please do your research on it first- as it's a bit controversial apparently

[[I have Crohn's disease ]]

Me too- and I have many of the symptoms you are mentioning

[[It was a bad infection, with neurological and cognitive symptoms, so I wonder if it may have done some lasting damage.]]

Quite possibly- But you are dealing with al to don't forget, lymes, Crohn's, possibly arthritis, and it takes a tremendous toll on the body and will result in the symptoms you list

[[ I've been deficient on vit D before, but I've been taking a strong supplement since then.]]

Not uncommon for people with Crohn's- I was severely low- at 9- took awhile but got it back up again- you won't have to take steady diet of D vitamins- just enough to get level back to normal- I found though that regaining normal level did nothing for me strength-wise- didn't even feel any difference between low and normal range-

Crhon's patients also have hard time absorbing Vit b12- you should be getting shots for it but I also found the shots did nothing for me- so I quit taking them

[[Chronic Fatigue seems like another likely cause, maybe Fibromyalgia, but I don't seem to have the tender points.]]

I am in exact same boat as you- Docs will say 'fibromyalgia' one day, Chronic fatigue the next, then 'it's just your crohn's' the third- and so on- I too have no tender points OR trigger points- but all the symptoms practically of both fibro and chronic fatigue, even some symptoms of MS it seems-

Additional symptoms for me that you too might be experiencing?:

1: Night sweats- terrible, literally soaked heat to toe- every night-

2: exercise intolerance- My muscles almost immediately begin to hurt doing things like raking, or lawn mowing- calf muscle and arm muscles, and neck especially- they burn- like it's a build-up of lactic acid- I have to stop and let this burning sensation stop- then I can do a it more, then stop and so on and so on...

3: My thermal regulator is broken it seems- I'm constantly cold or too hot- never really a happy medium- I'll be cold most of the summer even- and this is very unusual for me- I used to work outside all day every day- during temps as low as -30f .. Now anything below 75f and I'm cold

4: Painful hands I n the cold- Renaud's syndrome I guess

5: Constant non stop muscle tension (which leads to the burning muscle pain I'm having)- Especially in neck and shoulders- I can not relax my muscles unless I'm consciously trying to- they are just always tensed up like I'm bracing for an accident for some reason

6: Vision getting worse, could be old age, could be related to a condition- who knows...

7: I find that if I over do it- too much exercise or activity, and believe me, it doesn't take much at all- just like an hour's walk or so (and that is really pushing it for me)- I'll pay the price for several days until I recuperate and get back to my usual crappy feeling

8: When I over do it, I'll get light headed, dizzy, sick to my stomach, sweat will be running right off me- my muscles get real shaky, trembling, short of breath, can't think straight, can't talk well- voices will fade in and out when I've really over done it- it's almost liek I'm passing out- I have to sit down for 5-10 minutes, then I can go a bit more-

There's more, but can't think right now- today is a bad day for me- but you get the idea-

[[I don't want to take pain meds. I want something to treat what's causing the pain and my other symptoms.]]

usually, with chronic fatigue, fibro etc- pain meds are what is used to treat it- There isn't any cure, all you can do is manage the pain really- I was on hydrocodone for about 3 years- kind of a low dose 4 times a day- it helped quite a bit- I came off them, like a dummy, (quit smoking at the same time- Wow- what a horrible withdrawal that was)- Thinking that 'the pain won't kill me- not realizing that while it won't kill me, it WILL make life much more miserable, and now they won't put me back on them, and have labeled me a 'drug seeker' (even though I took myself OFF them because I didn't like being addicted) simply because I want relief from this horrible pain-
Posted 3/4/2015 6:56 PM (GMT 0)
popo

[[I try to explain to my husband how I feel and while he's sympathetic to my issues I sometimes feel as though he thinks I tend to exaggerate my symptoms.]]

It's possible he feels that way, but it's also possible he feels helpless, not knowing how to 'make it all better' for the love of his life- it's a hard thing for a man, who is supposed to be the protector, to realize he can't protect you from your symptoms- please keep that in mind-

[[I have good days and bad days. Bad days are spent on the couch with 3 heating pads feeling like I've been run over by a greyhound bus--TWICE!! Cold weather makes most of my symptoms worse it seems.]]

Unfortunately that is your new 'norm'- and something you are going to have to learn to cope with- it aint easy- believe me- I've been dealing with this now for over 40 years (I was at least able to work up until age 30- even being very active, I would just get run down from time to time- perhaps 3-4 times a month- then 8-10 times a month- recoup, be fine for awhile- then it became run down every couple of days- until I finally had to go on disability- I fought it for a very long time- longer than I should have really- as it was a very tough thing to accept-

[[Besides all over pain- it's worse in my legs and feet to the point that I hate to sit because standing up to walk again hurts so bad- ]]

That's how my disability started out, in the feet and calf muscles- My feet would just really hurt at end of day- then it started about 1/2 through the day- calf muscles would tighten up and not release like normal- just thought it coincidental that you mention that- that was my first noticeable symptoms- Heels felt like someone took a bat to them- they would feel bruised, but no actual bruises present- almost liek the bone in heels was bruised or something- quite painful-

[[I had an MRI that was negative for lesions but I've talked to so many people that say it sounds like MS.]]

But it also sounds like fibro, Chronic Fatigue, or even just the Crohn's- that's what is so frustrating htough- I've nearly given up and just settling on 'it's just the Crohn's' thought-

My case was even more bizarre in that I had a pituitary tumor which caused a very rare 'acromegaly' issue- I was hopeful that that was what was causing my symptoms, because my symptoms are seen in people with acromegaly, however, the tumor was removed, successfully, and I no longer have acromegaly, and still have all my symptoms- it was a major let down to me thinking finally they had found the cause of my symptoms- only to find out they hand't
Posted 3/4/2015 7:02 PM (GMT 0)
[[I lost the color vision then over several days the functional vision in one eye. I was legally blind in that eye for about 4 months.]]

Back when I was smoking, I was in a barn lighting a cigg, took my lighter out, lit it, saw the flame for a second, then I went completely blind for about 45 seconds- couldn't see anything, not even the flame- That was a scary deal- vision came back and been ok since-
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