Journey to a Diagnosis... Please Read...

[Lambie2004]

Hi! I'm new here! I'm 33, married, and mom to 5 amazing kids! I'll try to get to the point quickly. I've had a wide variety of crazy symptoms for the past 10 years the main thing being unbearable all over pain. 6 months ago had a blinding headache and the next day woke up with tingling/numbness/weakness on my entire right side. MRI (no contrast) of brain was clear. Doc says Lyme even though I was only positive on the 41 band. 6 weeks of antibiotics with no changes. Severely low CD57 and was told it was caused by the Lyme, but mycoplasma pneumoniae can do that too and my #s were CRAZY high for that on some bloodwork results. Also positive with EBV and HHV-6. I've had a feeling from day 1 that it's MS. And doc started to second guess Lyme dx so sent me to neuro. Had an MRI done of c-spine on Monday and they will call tomorrow with the results. I feel very strongly that there are spinal lesions. Random head nod, uncontrollable eye movements, been tingling on right side for 6 months, major cognative problems involving memory and concentration, can't hardly get words out and stutter sometimes which is so embarrassing. Everyone says "It's stress honey! You've got 5 kids!" Yeah well I've had severe all over body pain for 6 years and couldn't do much about it trying to raise the kids and keep house and such. Remember toes going numb way back when I was a teenager. When I have to pee I have to get there quick or else! And also wet the bed twice in the last 8 years - doesn't seem much, but full grown women usually don't wet the bed. Just want to feel healthy and tired of everyone saying "It's all in your head!" My dad is the worst with that, but I guess he's in denial that something serious could be wrong. Been waking up gasping, but sleep study came back normal - it's like when I'm drifting off to sleep by brain forgets to tell my body to breath! Does this sound like MS or am I worried for nothing? Oh yeah, EMG done on Monday was normal.

[NHE]

Hi Lambie2004,
Welcome to ThisIsMS. Besides the Lyme test, what other blood work have you had done?

[Scott1]

Hi,

Go to an ENT specialist about the breathing issue when you fall asleep. It sounds like sleep apnea. Someone needs to look up your nose and down your throat for obstruction. Do you mouth breathe or nose breathe?

NHE asks the right question. What tests have you had.

Regards,

[Lambie2004]

They looked at all vitamin levels and B12 was actually 'too high', cholesterol was like 2 pts too high, CD57 was 24 and then 18 after 6 wks of abx. B/c of cd57 being so low doc said 'bingo it def is lyme!', but now I know mycoplasma can lower cd57 and my mycoplasma # was 1296 and the highest # in normal range is like 796. He said they want 3 to 5 positive markers to say lyme and I only ever had 1 and that was band 41. EBV and HHV 6 positive (which some say causes MS). Then doc kept saying "we're treating this 'like' a lyme's case" Why would he say it like that?

[Lambie2004]

Did an overnight sleep study at home and it came back normal. Just like everything always does with me. I'm in misery and want answers. It's hard waking up everyday and pretending to be okay b/c you 'look' fine and no one believes you. Can't remember the last time I felt healthy.

[Kiyaan]

Did an overnight sleep study at home and it came back normal. Just like everything always does with me. I'm in misery and want answers. It's hard waking up everyday and pretending to be okay b/c you 'look' fine and no one believes you. Can't remember the last time I felt healthy.

Hey Lambie,

Welcome to the board, and I'm sorry to hear about your troubles. For what it's worth, most of the people on this forum have been told on one occasion or another that it is all in their head. Personally, I got so tired of things being written off as stress, psychosomatic or just purely in my head that I decided to report symptoms that would suggest that I may have a tumor so a doctor at a walk-in clinic (not my GP) would finally refer me to a neurologist (who actually diagnosed carpal tunnel syndrome when I told her I can't play the guitar any more - it took another few years for me to eventually be diagnosed with MS, because - I suspect - I did not fit the mould they were expecting (my symptoms were atypical, and I am not a Caucasian female!) It didn't help that I was -I think justifiably- nervous and alarmed, because it fit the narrative the doctor was considering. Moreover, even if it just in your head (e.g. anxiety or panic attacks) it doesn't make it any less traumatizing - it is real to the person who is experiencing it.

I think at this point, you're looking for an answer - any answer, just some sort of certainty (which is again something that a lot of people here can speak to), so if nothing else, we can offer you our understanding given our shared experiences. Having said that, what your describing doesn't immediately suggest MS to me, as a lay person. Your eyes moving randomly could be nystagmus (which is just a Greek/Latin word for random eye-movement) but, considering that your brain MRI came back 'clean' I think the likelihood of it being related to MS is low. If the random eye movement is nystagmus brought on by MS, I would expect to see some damage on the brain MRI. Although I have read studies that suggest it is possible to have MS without it showing up on an MRI, I think the absence of lesions, at the very least, dramatically lowers the likelihood of you having MS. Slurred speech is also something that is seen in MS, but it doesn't usually present early on in the course of the disease. The Parasthesias are not specific to MS and could have a number of causes, including, you guessed it, stress and anxiety. The same could be said for the cognitive issues you describe. Having pain is usual in MS, despite what some doctors claim, but again, for pain to last 6 years without (I'm assuming) change for the better or worse, it is unlikely to be an MS symptom. Broadly speaking, MS is either relapsing-remitting (where you'll have an acute episode - in your case pain followed by some, or complete relief), or it is progressive, which means things should be getting worse.

So, in the end, I think there are three possibilities ordered in terms of likelihood: you don't have MS, you may have really slowly progressing MS, or, the least likely of all in my opinion, you may have relapsing remitting MS. That doesn't get you much closer to the answer you're looking for, but I hope it provided at least a bit of context. Keep in mind, IF it is MS, there are a number of therapies available and there is progress being made everyday, so all is not lost (I mean, we're all still here, working, raising families, doing the best we can with the hand we were dealt and sometimes we even post on internet forums).

Good luck with everything, and I hope you find an answer soon (and hopefully one that is not cause for much concern).

[lyndacarol]

They looked at all vitamin levels and B12 was actually 'too high', cholesterol was like 2 pts too high, CD57 was 24 and then 18 after 6 wks of abx. B/c of cd57 being so low doc said 'bingo it def is lyme!', but now I know mycoplasma can lower cd57 and my mycoplasma # was 1296 and the highest # in normal range is like 796. He said they want 3 to 5 positive markers to say lyme and I only ever had 1 and that was band 41. EBV and HHV 6 positive (which some say causes MS). Then doc kept saying "we're treating this 'like' a lyme's case" Why would he say it like that?

Hi, Lambie2004.

Since vitamin D deficiency is so very common (and can affect any system of the body – the nervous system, the immune system, the vascular system, and EVERY other system), I assume that one of your blood tests included the vitamin D blood test called "25-Hydroxy D."

What was the actual number result of the test?

According to the California-based group GrassrootsHealth (http://www.grassrootshealth.net), the serum vitamin D3 level should be at least 40-60 ng/mL. When I was tested in January, my level was 24.

The children of a vitamin D deficient mother can start life with their own vitamin D deficiency… So it might be a good idea for your children to have this blood test, too, when they have any blood test done in the future.

[Scott1]

Hi,

They say "Lyme like" because definitive Lyme is hard to prove. If you live in a region where Lyme is not regarded to exist then you may have an infection that is not known but looks like Lyme, e.g. Rickettsia, or another tick bite caused pathogen.

Mycoplasma can be a Lyme co-infection or exist on its own as can Babesia or Bartonella. There are a range of bugs in each species.

I dont know what that Mycoplasma number means but if it is outside the range is he going to treat you for a Mycoplasma? Did they identify which one?

I looked for a good explanation on CD57 but all the ones I found seem to be almost a "cut and paste" of each other. Here's one - http://www.ppt-health.com/lyme-disease- ... anel-test/

One of the criticisms of testing for Lyme is that one lab can find it but many others can't. This raises the concern that there is a procedural issue in that lab and it is the common criticism of test results.

If you are in a part of the world where Lyme is recognised (e.g.the US) then the treatment is straight forward. If you live in a place where it is not regarded as existing (e.g. Australia) then I wish you all the best.

Regards,

[David1949]

If you're going to hope for Lyme or MS take Lyme. It can be cured. MS can't.

I wish you well either way.