Hi everyone, it's been a few days since I logged on....hope everyone is doing ok?
The good news is that some of my symptoms seem to be diappearing or at least they haven't popped in so say hello for a few days.
However, my hips keep cracking. Well, it's a cross been a pop and a crack....if that makes sense. It seems to be happening more and more, whenever I stand from sitting or when I sit down again. It doesn't hurt although my hip joints have hurt on and off since all this started.... it just makes a loud noise. I know it's probably nothing to do with what has been happening and it's probably unrelated but just I would see if anyone knew what might be causing it. I normally swim everyday but since all this has happened I haven't been able to...could this may be have something to do with it.
I know what you mean about the aymptoms. Right now I'm going through the 'this can't be ms', when I have a good day start thinking maybe I've just got myself in a state and made things worse. Then I go through a bad day and think, this must be MS what else can it be.
Tried recently to keep my mind of things abit by reading and painting..whatever helps I guess.
Hope you are ok though. Good to hear from you though xx
Well, I'm doing okay, thanks. I'm beginning to believe. I just read Quix's 2nd post to Angela on - Non specific imaging findings. That's what's got me believing - I've had a hard time of it and that just hit home for me.
It's good to hear from you too....
I'm glad your symptoms are starting to subside Em!
I'm still searching for a Dx, but for me, I feel it's a "catch 22" if a Sx lessons. I'm happy to feel a bit better, but that also points more towards a relapsing-remitting MS. :( (I'm so in denial right now).
I have hips that "pop" too. They have been doing that for some time. I don't feel mine is "MS-related", but think it's more of an osteoarthritis thing going on.
I am a fellow limboer. You can read my history/time line which is on this page. My Internist has diagnosed me with MS, but I don't think it's official until a neruo diagnosis you.
You might want to see a Rheumatologist for your hips. My Rheumy has been following me for several years for my Hypermobility issues. He says I will be more likely to develop OA because of it. I do have OA in my knees.
A couple things contribute to joints popping, clicking and grinding in MS. The first is the change in muscle tone. If one set of muscles is weakened the support it provides to the joint it services will be lessened and the "push pull" balance disrupted. The joint will not move in place as smoothly and may actually subluxe (slide out of place a bit). Or if a muscle develops too much tone (stiffness or spasticity) the pull on a joint may cause the same thing.
Also if there is already a little arthritis in that joint the changed movement from change in muscle strength or tone will cause it to grate or grind.
Inactivity because of fatigue or weakness will cause the muscular support around the joint to weaken and the joint won't be as stable. This is another (similar) cause of joints doing the Rice Krispy thing or popping. I have heard, but don't know the reference, that in MS there is very often an increase noted in neck grinding - both noises and sensation. Mine certainly increased dramatically after my other symptoms began.
Thanks Quix, I thought as much. My muscles are definately disappearing on my legs (thighs) but they would do as I used to swim a mile at night then cycles anything up to 20 miles at the weekend. It's probably not a bad thing..I always had huge chunky thigh muscles so it's probably a good time to 're-shape' them when I get back to normal....see there is a silver lining to everything eh...!
What I can offer knowing that this information is hard to swollow...If Limboland is where you are getting the right test to rule out Lyme should be on your list of possible "reasons"... why? all the above symptoms seem to say "lyme". Popping joints, muscle weakness, brain fog to name a few especially if they come and go... other classical symptoms of lyme.
If you've ever been tested, and came up negative, lots of us that really have lyme can say the same.
Here's an easy to understand reason "why" testing for lyme is difficult/flawed.
The last comment from Melissa K is the most important...lyme needs to be a Clinical Diagnosis!
Find a doctor who is a member of ILADS, we call them Lyme Literate Doctors....and just maybe this doctor will take you out of limboland...and on your way to good health.
Thanks for the reply, you are certainly not the first to ask the question about being tested for Lyme's, so I then asked the question, got a gunny look from the Dr but they did the test. I have been tested but as you say nothing is 100% certain. They have also ruled out mylelitis and stroke etc. I guess it's just awaiting game which I'm ok with. Took me a while but I've got the hang of all of this now. I'm hoping it will go away and never come back...there's hoping.
Been referred to MS specialist so hopegully will know more then.
well, I'm not surprised regarding the look from your doctor....can't comment any further other than many of us with lyme received this very treatment...I do wish you good health; I hope you find your answer.
I too have MS and was on a Disease Modifying Drug..I have lesions in both my brain and spinal cord, TN, had nystagmus, to name a few.
I now am treating my MS as a bacterial infection. and having very good results! I now know a wheelchair will not be in my future, as my neuro warned me about.
Could infection be the underlying cause? This I guess is for each of us to look at. I seem to jump into many of the questions because I share this debilitating disease...which there is no cure.
and have a need to tell whomever listens they too can get better.
Am I saying that all MS is Lyme? I can't answer that, but I can answer this way....there are lots of us who were diagnosed with MS, found a lyme doctor and are getting better because of antibiotics!
My lesions, btw, are resolving! This dosen't happen when DMD's are the drugs of choice.
again, from one with MS to someone who might have MS
I wish you the best,
So that I'm understanding this right.... You have been Dx'd with MS, but are treating it as if it were Lyme Disease (with the antibiotics)? How long have you been on the antibiotics? How long were you on the DMD?
Thanks again for your reply. Really pleased you are getting the right treatment, even if it means going down a different route. I admire your attitude greatly.
I was tested for infection too but those results came out negative too. Too be honest I'm a pretty positive person and always look on the bright side. 2 years ago I was diagnosed with cervical cancer 2 weeks before my wedding..I took the decision to only tell my husband, sister and best friend before the wedding as my attitude was...well there's nothing I can do about so it's not going to beat me or ruin what should be a really happy time....it didn't. But to be honest that was so much easier as I knew what I was fighting.
With regards to this 'episode' in my life. I fully hope to be back fighting fit shortly. you can't keep a good women down for long. I 've even managed to laugh a bit through all of this but I have also had some pertty dark days...but I still smile.
As you said, here's hoping it just goes away, I might not ever know what it is but I know for me personally I've prepared myself for what I see as the 3 endings to this. It might go and never come back with no answers. It may come back again...still with no answers. Or, as I've been adviced turn into MS. But with the support from everyone on here and my husband, family and friends no matter what the outcome I'm hping to take the same attitude as so many on here.
yes, that's right I have MS for many years; on DMD's for 2 yrs...
I then began reading about the connection between MS having an infectious cause. why? A relative of mine a very strong healthy man was diagnosed with MS! I just couldn't believe it and I began researching about Lyme Disease..for his sake! With some pushing and nugging after he was on Avonex for 1.5 yrs; he took the plunge to see a Lyme Literate Doctor...yes, he has Lyme Disease. I was stunned, confused and still didn't consider this to be something for me. After more months past, I read about Chlaymydia Pneumonia (not the sexy one) and started taking the Antioxident
N-Acetyl-Cysteine or NAC. It's believed that if you have a Cpn infection you will have a reaction of stuffiness, runny nose, maybe flu-like symptoms. NAC can be used instead of Amoxicillian. I reacted to it and thought, hmm.
I then found a lyme doctor and yes, it's an infection I too have Lyme Disease...
As I will state, in order to not get into any tiffs...is all MS an infection? Can't answer that, but I can suggest that perhaps others with MS also have an infection.
This is the hard part..testing for Lyme Disease and the co-infections (Cpn- is a co-infection) isn't easily detected. Our immune systems "can't" recognize the bacteria; so most of us test negative!!
Lyme Disease is supposed to be a clinical diagnosis because of the flawed testing! When a lyme doctor looks at my lesions from my MRI's on my brain and spinal cord, along with the tingles, numbness, TN, loss of coordination, etc, Lyme becomes a strong possibility! These MS symptoms are symptoms of Lyme..including the lesions.
These docs will then began a "trial" period of antibiotics, and wait to see if we have what is called a Jarish Herxheimer reaction...and yes, I had what is called a herx. This and the test results is what a knowledgeable lyme doctor diagnosis with! This isn't quackery, these are docs that are educated in this bacteria, and help us get better! btw, being concerned with antibiotic resistance isn't something we with Lyme need to be concerned with; as long as there is a persistant infection- antibiotics won't become resistant.
Here's some good reading if you're interested:
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