Find your diamond
Find your jewelry
shape
carat
color
clarity

Unexpected medical adventure

Hey TP, it's me, horning in on stuff again. I hope you're doing well. Is your eye still improving?

I'd be very surprised if they hadn't checked your D status when they did all that blood work. They did with me, and I was low in both D and B12.

Vit D is a hot topic in the MS community. I was working up some stuff to post, and I promise I'll post a bunch more, but right now I'll just add that you probably want to take some magnesium glycinate and vitamin K2 along with the D.

I'm off to a funeral. Yay. So back later!
 
Please forgive any randomness. My head is killing me today and I am super tired. I feel like my memory has been not so good lately. I was driving with DH one day and just suddenly had no idea where I was. DH says I have also been speaking slowly, repeating myself, and starting sentences over again.

Vision is about the same -- seeing "okay" but color blind in the one eye and difficulty focusing at different distances sometimes. Neurological ophthalmologist is happy with progress. Following up with him in September.

MS clinic scheduled for the first week of June.

I saw my PCP last week to get someone who can tie it all together and coordinate everything for me. I detailed what I have been going through and she spent more than an hour with me going over everything and where we go from here. Glad I took the time to go see her!
She is concerned that some of what I describe is not generally MS symptoms and actually suggest thyroid or heart issues. She ordered the appropriate tests and we are moving forward on checking those out too.

Thyroid: TSH came back as high when I was in the hospital (5.8 or something) but the blood test this week puts it 0.3 under the top of the normal range. She has more blood work ordered for this to check in more detail.

Heart: The nurse did an ECG in my PCP office on Friday last week and it looked "okay" but borderline short PR something. The Dr had already referred me to an echo cardiogram then follow up with cardiologist due to some serious symptoms indicating heart issues. Blood work shows no heart failure. My echo cardiogram is day after tomorrow.

Blood clots: Turns out I do not have blood clots. Swelling in the legs and some of what she felt around my ankles caused her to order testing just to be safe. I had an ultrasound that same afternoon from my feet on up to my bra band.

Cancer: I missed the conversation with the Dr in the hospital who said that a negative test meant 80% chance not cancer. (DH says I was there but I don't remember it. My PCP confirms info.) Great. I already had the full body CT scan in the hospital so that was able to show no masses in my body but it isn't the best at soft tissue. PCP ordered a mammogram for me so that I can be extra cautious and get them checked too. Pap smear scheduled for a few weeks from now since it was that time anyway.

Blood work:
Anion GAP is 18.0 (normal is 10.0-18.0)
LYMPHS is 3.4 (normal is 0.7-3.1)
TSH is 4.34 (normal is 0.45-4.5)
Other than these (which are awfully close to the edge, but seem okay), everything else has come in right in the middle of normal.


Anyway...
I'm miserable but pushing through. Hoping that they can help me get as much balanced out as possible so I can feel as comfortable as possible. I can't do much of any exercise right now since I get winded with an elevated HR and funky looking EKG when I exert at all. Just taking a day at a time and doing what I can to get better.

Upcoming:
more blood work (PCP just sent the order for a bunch more)
echo cardiogram
mammogram
pap smear
cardiologist
MS clinic
 
T3 and T4 results are back. Both within normal.

Echocardiogram in a few hours.
 
I hope they get to the bottom of what is causing this Too Patient. I’m sorry you have had to deal with this the past few months.
 
Well poop. I had a reply mostly typed yesterday, and POOF! It is nowhere to be found.

Redoing...

First, glad your thyroid is working. :)

OK, what you're describing:
"My head is killing me today and I am super tired. I feel like my memory has been not so good lately. I was driving with DH one day and just suddenly had no idea where I was. DH says I have also been speaking slowly, repeating myself, and starting sentences over again.",

Those can be other things, but they are all very common MS symptoms. I realize you have other stuff going on, but if your GP is saying those particular symptoms don't sound MS-y enough, she's just uninformed. I promise you, they are.

Now, she is perfectly correct in NOT attributing those to MS and for looking for other causes, because you have not been diagnosed with MS yet, and even if you had been, not everything is MS - maybe those will be something else that's easily fixed. I hope so. But please be sure you mention ALL of those at your MS appointment - it's more data for the doctor to round out the picture of your situation.

And think long and hard about how tired you are and how you would describe that tired. Is it the tired of working too hard, is it mental tired, or is it like you can barely lift a fork tired, barely make it to the bed tired. Think of how you'd describe it, in terms kind of like what I just gave, because fatigue is a HUGE part of MS, but there is a level of fatigue called "lassitude" that really only happens in MS (and maybe chronic fatigue, I'm not sure on that) and is a level of tired that is so bad you can barely move. I'm just fatigued mostly, (which is still way different than normal tired), and luckily I rarely get lassitude, but it's pretty spectacular when I do. Anyway, the characteristics of your particular tired will be important when you see the MS doc.

Sorry you're having an echo. Damn procedures. :rolleyes: I've had two. One was years ago, and no issues. Easy peasy. In between that and the second one though, I developed fibromyalgia. That made the second one pretty awful. So I'm wishing you an experience like my first one - super easy. :)
 
Last edited:
@ksinger thank you again! So much helpful information helping me piece it all together.

Tired, pain, weakness, vision, etc my PCP says is clearly MS related.

Shortness of breath, higher heart rate, and really easy to raise (up to 200+ BPM) heart rate combined with my severe swelling (likely fluid retention) is enough she is worried about possible heart issues in addition to the MS. My ECG was slightly abnormal so the echo is to get ready for the cardiologist she reffered me to.

My TSH has been borderline high and high so she wanted to do extra checks to be sure that wasn't adding to my problems. (I also have other symptoms that are often associated to thyroid issues.)

Echocardiogram was easy. No contrast needed so just basic ultrasound. The technician says it looks good but the cardiologist will review. (He also assured me that if there was anything serious, I wouldn't be leaving until a cardiologist had checked me over and decided I was safe to leave or admitted me and sent for immediate care.)

Definitely mentioning EVERYTHING to the MS person. I want to make sure he can get the whole picture so we have the best options to consider. I'm just hoping that maybe part of it is something else that is easily treated so the MS isn't as bad as it is currently feeling.

Tired: I have had so many different "tired" experiences these last couple of months. Some is working too hard standard tired. Some is mental tired from school and figuring out this medical stuff. Some days are tired in the way I can barely pick up a plate and can't manage the 1/8 mile walk to get to my class. Some are worse where I just get exhausted and nap in the car until I can feel okay enough to drive home. There have been a couple of days where I was just too tired to eat and just slept/collapsed on the couch until I could make it down the hall to bed.
 
I hope you get some answers and good treatment plans soon @TooPatient . It sounds overwhelming to be honest. Take care.
 
TooPatient said:
@ksinger thank you again! So much helpful information helping me piece it all together.

Tired, pain, weakness, vision, etc my PCP says is clearly MS related.

Shortness of breath, higher heart rate, and really easy to raise (up to 200+ BPM) heart rate combined with my severe swelling (likely fluid retention) is enough she is worried about possible heart issues in addition to the MS. My ECG was slightly abnormal so the echo is to get ready for the cardiologist she reffered me to.

Tired: I have had so many different "tired" experiences these last couple of months. Some is working too hard standard tired. Some is mental tired from school and figuring out this medical stuff. Some days are tired in the way I can barely pick up a plate and can't manage the 1/8 mile walk to get to my class. Some are worse where I just get exhausted and nap in the car until I can feel okay enough to drive home. There have been a couple of days where I was just too tired to eat and just slept/collapsed on the couch until I could make it down the hall to bed.
Click to expand...

Excellent! I know it may have sounded like I'm slagging docs, but when it comes to MS, it is amazing how many of them really have only the slightest idea of all the crazy symptoms you can get. The potential for a blow-off or "oh, she's overstating X" is usually pretty high. I'm glad your doc isn't doing that.

And yes, the heart stuff should be run down (no pun intended! ha!). IF you have MS, it is absolutely no guarantee that you can't have something else going on at the same time. So yes, hopefully some or maybe even all? of the tired is related to this and can be treated once they get your ticker issues figured out.

And as you should have figured out, I do keep an eye on you here. :)) I'm always wishing you the best and hoping that I provide some possible context for some of what you're dealing with. You're dealing with a LOT, and oh how I understand how draining that is.
 
TooPatient said:
Shortness of breath, higher heart rate, and really easy to raise (up to 200+ BPM) heart rate combined with my severe swelling (likely fluid retention) is enough she is worried about possible heart issues in addition to the MS
Click to expand...

TP I hope they figure all this out real soon and you start feeling better. I read that your thyroid results came back all within "Normal" But what you just described is "ME" right there, I have Graves been diagnosed 12 years ago, had 2 premature births 35 and 33 years ago and was told oh accident of nature (yeah right) since my numbers all came back within the normal.Please tell me more about your swelling and where is it located? Have them run tests for anti bodies Graves and Hashimotos(sp) who knows.
 
Cluless said:
TP I hope they figure all this out real soon and you start feeling better. I read that your thyroid results came back all within "Normal" But what you just described is "ME" right there, I have Graves been diagnosed 12 years ago, had 2 premature births 35 and 33 years ago and was told oh accident of nature (yeah right) since my numbers all came back within the normal.Please tell me more about your swelling and where is it located? Have them run tests for anti bodies Graves and Hashimotos(sp) who knows.
Click to expand...

Thank you! I knew I had heard something about testing "normal" but still having issues. I will add to my list of things to have them check.

Swelling is full body but BAD in lower legs and feet. Bad enough I have had to wear slippers because even my 9 1/2 wide tennis shoes wouldn't go on. (I had been in 7...) Doesn't seem to matter what I have eaten. Has swollen being up or down in past, but now is mostly an issue if I stand up or walk. I have ankles if I lay on the couch all day. The swelling is painful to touch. It is more on the right side of my body than left, but both are impacted.
I weighed myself each morning for awhile. Dropped 10 pounds literally over 24 hours (didn't do anything so figured scale glitch except my clothes fit better). Then another time I gained more than 20 pounds (just shy of 30) literally overnight. Thought it had to be a scale glitch but I couldn't fit I to any of my pants or skirts (not even close!) and my rings wouldn't go on.
 
ksinger said:
Excellent! I know it may have sounded like I'm slagging docs, but when it comes to MS, it is amazing how many of them really have only the slightest idea of all the crazy symptoms you can get. The potential for a blow-off or "oh, she's overstating X" is usually pretty high. I'm glad your doc isn't doing that.

And yes, the heart stuff should be run down (no pun intended! ha!). IF you have MS, it is absolutely no guarantee that you can't have something else going on at the same time. So yes, hopefully some or maybe even all? of the tired is related to this and can be treated once they get your ticker issues figured out.

And as you should have figured out, I do keep an eye on you here. :)) I'm always wishing you the best and hoping that I provide some possible context for some of what you're dealing with. You're dealing with a LOT, and oh how I understand how draining that is.
Click to expand...

I can't relax and just trust Drs to know due to things I have seen in past. I can only imagine how much you went through with them! Thanks for keeping an eye for me. It truly helps having someone who has been through all of this let me know what to push for or avoid and even just let me know this is how it works and i'I not crazy.
 
TP any itchiness, does the skin look pinker, thicker where it's swollen, dryer ?
 
Cluless said:
TP any itchiness, does the skin look pinker, thicker where it's swollen, dryer ?
Click to expand...

Not really. Minimal itchiness during winter but I have that in other areas too. The skin looks the same as all over my body.
 
ah ok I was thinking pretibial myxedema which not only affects the skin but also causes swelling or lymphedema
 
I am tentatively pleased with the MS doctor. He took the time to show me my MRIs and what he is looking at. I have spots that didn't show contrast which means MS activity prior to the active flare they did the scans during. No way to know when. Plus the three that were active when I went in.

He says that symptoms and tests point to an MS diagnosis. He wants to do due diligence and rule out a vitamin deficiency that mimics MS. (Heading to lab for that blood draw now). Other neurological stuff was already ruled out by other tests along the way.

I have two MRIs of my spine next week since some of my symptoms suggest possible spine involvement in the MS. This will help as we meet again in two weeks to discuss possible options for what to do or not do going forward.

He says there are different options and wants to have all of this info so we can discuss with as much information as possible.
 
Ah my dear, I'm truly sorry to welcome you to the club no one wants to be in. :(2 Yes, if you have old lesions, plus the active new, you've pretty much met a very critical component of the MacDonald Criteria: DIT and DIS - dissemination of lesions in time and space. Discovery of spinal lesions would merely add to that.
Of course there is quite a bit more to a diagnosis than what's in the graphic I'm linking, but it looks like you've got the 3rd row pretty much nailed.
https://www.nationalmssociety.org/N...s/Diagnosing Criteria/2018_dxcard_2018-01.png

And two more spinal MRIs? Ye gods, they're doing the same thing to you that they did to me - trying to MRI you to death. I've been doing this for about 4 years now, and I'm going in next week for my 10th MRI. TEN. Depending on certain factors, I can actually doze off now in an MRI tube. Pretty pitiful. This time though, I'm putting my foot down and refusing contrast. I've had quite enough gadolinium in the last 4 years, thank you very much.

Your neuro sounds good. It's a good sign that he's showing you stuff and explaining his rationale. He will probably be a keeper.

Keep us posted OK?
 
ksinger said:
Ah my dear, I'm truly sorry to welcome you to the club no one wants to be in. :(2 Yes, if you have old lesions, plus the active new, you've pretty much met a very critical component of the MacDonald Criteria: DIT and DIS - dissemination of lesions in time and space. Discovery of spinal lesions would merely add to that.
Of course there is quite a bit more to a diagnosis than what's in the graphic I'm linking, but it looks like you've got the 3rd row pretty much nailed.
https://www.nationalmssociety.org/NationalMSSociety/media/MSNational/Professionals/Diagnosing Criteria/2018_dxcard_2018-01.png

And two more spinal MRIs? Ye gods, they're doing the same thing to you that they did to me - trying to MRI you to death. I've been doing this for about 4 years now, and I'm going in next week for my 10th MRI. TEN. Depending on certain factors, I can actually doze off now in an MRI tube. Pretty pitiful. This time though, I'm putting my foot down and refusing contrast. I've had quite enough gadolinium in the last 4 years, thank you very much.

Your neuro sounds good. It's a good sign that he's showing you stuff and explaining his rationale. He will probably be a keeper.

Keep us posted OK?
Click to expand...

Yay. I guess at least it is obvious and I won't have the back and forth between MS, oncology, and whoever. I was concerned he would say it wasn't "classic" so insist on a biopsy since it looked more like cancer to all of the other doctors involved.

Luckily, I have only had one MRI with contrast. The second was clear enough that they didn't need to use it. (I made up for this by having the full body CT scan...). The assistant was able to schedule the upper/lower back together so (hopefully) just one dose of contrast for these two.

3rd tier definitely met. I have old/new lesions plus the CSF specific oligoclonal bands. (Had 3 currently active lesions plus a handful of old.)

Still to come:
2 spinal MRIs
Mammogram
Papsmear
24 hour holter monitor
At home sleep study
Cardiologist
 
Again, I'm really really sorry this has happened to you. And I had to grin when you said it looked like cancer to all the other docs. I sometimes think the patient is often an elephant surrounded by not blind men, but certainly myopic ones. They can only see what they're laser focused on.

MS is almost never "classic", as I'm sure you're finding out. That's what makes it such a bear to diagnose. My age at diagnosis - after 50 - is considered "late-onset" and is fairly rare, and meant that they had to make extra sure that not only was it not all the usual other culprits, but that it wasn't some age-related comorbidity. Of course, I may have been diagnosed late, but I didn't just wake up one day with MS - high weirdness had been going on since around 2005 at least - various nerve pains over the years, the headaches, and the fatigue, OMG the fatigue. Episodes of what I now know were MS-level fatigue were hitting me as early as 2011, 3 years prior to diagnosis.

But back to you, so 3 o-bands. Wow. I guess I had just assumed you came back negative on them and forgot to check back on that. Yeah...o-bands. They were a big part of my dx too - I had 8. Speaking in vast generalities, the prevailing surmise is that they take time to accumulate, and that once they're in your CSF, they don't go away. Kind of like tree rings.

And yes, it will only be one shot of contrast for both of the MRIs they'll do. It'll just feel like one really long one to you. They will be imaging the cervical spine and the thoracic spine. The lumbar spine is not imaged.
 
ksinger said:
Again, I'm really really sorry this has happened to you. And I had to grin when you said it looked like cancer to all the other docs. I sometimes think the patient is often an elephant surrounded by not blind men, but certainly myopic ones. They can only see what they're laser focused on.

MS is almost never "classic", as I'm sure you're finding out. That's what makes it such a bear to diagnose. My age at diagnosis - after 50 - is considered "late-onset" and is fairly rare, and meant that they had to make extra sure that not only was it not all the usual other culprits, but that it wasn't some age-related comorbidity. Of course, I may have been diagnosed late, but I didn't just wake up one day with MS - high weirdness had been going on since around 2005 at least - various nerve pains over the years, the headaches, and the fatigue, OMG the fatigue. Episodes of what I now know were MS-level fatigue were hitting me as early as 2011, 3 years prior to diagnosis.

But back to you, so 3 o-bands. Wow. I guess I had just assumed you came back negative on them and forgot to check back on that. Yeah...o-bands. They were a big part of my dx too - I had 8. Speaking in vast generalities, the prevailing surmise is that they take time to accumulate, and that once they're in your CSF, they don't go away. Kind of like tree rings.

And yes, it will only be one shot of contrast for both of the MRIs they'll do. It'll just feel like one really long one to you. They will be imaging the cervical spine and the thoracic spine. The lumbar spine is not imaged.
Click to expand...

That sounds awful. Plenty of testing as is!

7 o-bands. Interesting they build up over time. I wonder how long they take to build. Probably changes from person to person!
 
I may not know what I'm talking about, this is for sure. However, I have a friend, she had major symptoms of cancer and it turned out she was extremely gluten intolerant. Just a thought, could it be something such as gluten? Just throwing something out there that could be possible. In any event, I feel very sad for your situation and will pray for you each and every day. Take care.
 
Queenie60 said:
I may not know what I'm talking about, this is for sure. However, I have a friend, she had major symptoms of cancer and it turned out she was extremely gluten intolerant. Just a thought, could it be something such as gluten? Just throwing something out there that could be possible. In any event, I feel very sad for your situation and will pray for you each and every day. Take care.
Click to expand...

I do have a sensitivity to wheat. It is amazing what something like that can do!

I'll definitely ask the Dr if anything like that could be possible, but the combination of spots in my brain plus the o-bands in spinal fluid make it unlikely to be anything but MS.
 
Hey TP, just a couple more things.

I'm going to assume they did not originally do a B12 test on you, that the doc is doing now, because as far as I know, B12 deficiency is the only vitamin deficiency that can cause symptoms that can mimic MS. B12 deficiency can also cause brain lesions. However, it's not enough just to have lesions - lots of things can cause brain lesions. And this is why having a doc (not just the radiologist) who is highly trained in interpreting MRI images is so important - the appearance and location of the lesions is critical. While MS lesions can occur almost anywhere, the allowable locations for an MS diagnosis, are spelled out in the MacDonald Criteria.

I'm running strictly on old memory here, but as I recall reading (and maybe seeing) lesions caused by B12 are more irregular in outline, while MS lesions are typically oval-ish and well defined.

And that's my way of saying, you can be deficient in B12 (I was) and still have MS be the best fit for the overall picture you present.

And now I'm going to wade in on the 900 lb gorillas you will encounter: peoples' well-meaning (some maybe not so well-meaning, actually) suggestions, and diet.

Once you have MS, you are likely to get a TON of unsolicited suggestions that your diet/presumed sleazy lifestyle/weight/laziness is responsible for you being in the condition you're in, and if you will just do X, you will nip it in the bud, easy peasy. (One friend of mine was told she was in her condition because she didn't pray enough :rolleyes: ) They will assume you are in need of their I-read-a-headline-on-the-internets, that include telling you about the latest EAE mouse study (mildly interesting, but EAE isn't MS and mice ain't (wo)men) chronic cerebrospinal venous insufficiency (aka CCSVI, and no, it's been seriously debunked) or autologous hematopoietic stem cell transplantation (aka AHSCT or just HSCT - this can work, but there's a LOT of fine print - the part about nearly killing you to save you - ala heavy chemotherapy - adds some spice to this one), or (and here's the one that make some of my MS friends near-homicidal) bee sting therapy. :rolleyes: And then there's Terry Wahl's diet, and Jelineck diet and...you get the idea.

But this blog can and does say it (pretty much all of "it") much better than I could.

https://www.trippingonair.com/2018/05/has-clean-eating-really-improved-your-ms.html

https://www.trippingonair.com/2018/06/how-to-be-weird-with-newly-diagnosed.html

https://www.trippingonair.com/2016/09/11-super-dumb-myths-about-ms-explained.html
 
ksinger said:
Hey TP, just a couple more things.

I'm going to assume they did not originally do a B12 test on you, that the doc is doing now, because as far as I know, B12 deficiency is the only vitamin deficiency that can cause symptoms that can mimic MS. B12 deficiency can also cause brain lesions. However, it's not enough just to have lesions - lots of things can cause brain lesions. And this is why having a doc (not just the radiologist) who is highly trained in interpreting MRI images is so important - the appearance and location of the lesions is critical. While MS lesions can occur almost anywhere, the allowable locations for an MS diagnosis, are spelled out in the MacDonald Criteria.

I'm running strictly on old memory here, but as I recall reading (and maybe seeing) lesions caused by B12 are more irregular in outline, while MS lesions are typically oval-ish and well defined.

And that's my way of saying, you can be deficient in B12 (I was) and still have MS be the best fit for the overall picture you present.

And now I'm going to wade in on the 900 lb gorillas you will encounter: peoples' well-meaning (some maybe not so well-meaning, actually) suggestions, and diet.

Once you have MS, you are likely to get a TON of unsolicited suggestions that your diet/presumed sleazy lifestyle/weight/laziness is responsible for you being in the condition you're in, and if you will just do X, you will nip it in the bud, easy peasy. (One friend of mine was told she was in her condition because she didn't pray enough :rolleyes: ) They will assume you are in need of their I-read-a-headline-on-the-internets, that include telling you about the latest EAE mouse study (mildly interesting, but EAE isn't MS and mice ain't (wo)men) chronic cerebrospinal venous insufficiency (aka CCSVI, and no, it's been seriously debunked) or autologous hematopoietic stem cell transplantation (aka AHSCT or just HSCT - this can work, but there's a LOT of fine print - the part about nearly killing you to save you - ala heavy chemotherapy - adds some spice to this one), or (and here's the one that make some of my MS friends near-homicidal) bee sting therapy. :rolleyes: And then there's Terry Wahl's diet, and Jelineck diet and...you get the idea.

But this blog can and does say it (pretty much all of "it") much better than I could.

https://www.trippingonair.com/2018/05/has-clean-eating-really-improved-your-ms.html

https://www.trippingonair.com/2018/06/how-to-be-weird-with-newly-diagnosed.html

https://www.trippingonair.com/2016/09/11-super-dumb-myths-about-ms-explained.html
Click to expand...

Yes, B12 specifically.

My B12 and D came back in normal range. The RPR is non-reactive. Other tests still not back yet, but so far all as expected.

OMG, yes to all the "I saw...." stuff and blame. I have really been avoiding most people because I just can't take any more of it right now. Yes, I gained weight. No, it is not the cause of MS. Yes, I eat veggies. So sick of going into all that with well-meaning but hurtful people. (What they don't know is that my weight gain is likely caused by a different medical issue!). I have had people suggesting gluten free and vegan as the "cure" to this stuff. And so much more.... Driving me crazy!
 
I flat out told one person that going for a run would literally kill me. Seeing a cardiologist next week. Hooked up on a heart monitor now. Yeah, great. Running "cured" you but it is NOT the right thing for me.

One guy actually said that I should get a massage because you know women can't handle stress or working so imagine they are sick.... (To my credit, I did not hit him!)
 
TooPatient said:
I flat out told one person that going for a run would literally kill me. Seeing a cardiologist next week. Hooked up on a heart monitor now. Yeah, great. Running "cured" you but it is NOT the right thing for me.

One guy actually said that I should get a massage because you know women can't handle stress or working so imagine they are sick.... (To my credit, I did not hit him!)
Click to expand...

:eek2:

:o

:eek-2:

People have some nerve!
 
TooPatient said:
Yes, B12 specifically.

My B12 and D came back in normal range. The RPR is non-reactive. Other tests still not back yet, but so far all as expected.

OMG, yes to all the "I saw...." stuff and blame. I have really been avoiding most people because I just can't take any more of it right now. Yes, I gained weight. No, it is not the cause of MS. Yes, I eat veggies. So sick of going into all that with well-meaning but hurtful people. (What they don't know is that my weight gain is likely caused by a different medical issue!). I have had people suggesting gluten free and vegan as the "cure" to this stuff. And so much more.... Driving me crazy!
Click to expand...

That's great that your D and B12 are normal. Well done you. :)

While it's always easier said than done, do try to not let it get to you. Most people who pipe up poorly do mean well (except the guy who said that women are imagining illness - I can get a brigade of cane-wielding pissed off MS'ers to help beat him up for you. Just say the word.) but are a) unable to see past the surface of pretty much anything, b) lacking in imagination - as in lacking in the ability to imagine themselves in your situation, or extrapolate their own feelings, let alone yours.

Oh, another thing, a bit tangential, did you ever have mono, diagnosed or suspected, and if so, what age?
You don't need to really answer if you don't want to, of course. But think about it, and you might want to mention it to your doc if he didn't ask. EBV is a suspected factor in the development of MS.
 
ksinger said:
That's great that your D and B12 are normal. Well done you. :)

While it's always easier said than done, do try to not let it get to you. Most people who pipe up poorly do mean well (except the guy who said that women are imagining illness - I can get a brigade of cane-wielding pissed off MS'ers to help beat him up for you. Just say the word.) but are a) unable to see past the surface of pretty much anything, b) lacking in imagination - as in lacking in the ability to imagine themselves in your situation, or extrapolate their own feelings, let alone yours.

Oh, another thing, a bit tangential, did you ever have mono, diagnosed or suspected, and if so, what age?
You don't need to really answer if you don't want to, of course. But think about it, and you might want to mention it to your doc if he didn't ask. EBV is a suspected factor in the development of MS.
Click to expand...

A group of cane wielders is tempting!

No mono. I have had a rather boring medical history outside of sinus infection and sprained ankles.

My grandmother has Parkinson's and I had seen somewhere that it may be linked.
 
I got to play teaching aid for a medical student. (Happy to help train more good doctors in the specialty!) The doctor asked if he could have a medical student with him. He wanted her to have a chance to watch how my eye with issues dilates with light rather than contracting. It was interesting getting to hear his explanations to her and what to look for.

Cold feels differently from place to place on my body. That was something I hadn't noticed in my day-to-day life.

Vibration touching my finger on one hand makes bad pain up my arm. Dr seemed surprised by this, but there it is.
 
TooPatient said:
A group of cane wielders is tempting!

No mono. I have had a rather boring medical history outside of sinus infection and sprained ankles.

My grandmother has Parkinson's and I had seen somewhere that it may be linked.
Click to expand...

Bummer on the mono. But not like bummer that you didn't have it, just that we don't know if you would test positive for EBV antibodies. I suspect you would though. The term "infectious mono" really only indicates a noticeable case of EBV. The estimates are around 95% of the population has contracted EBV, and most of the time that's in childhood and is subclinical, or so mild as to be indistinguishable from other childhood colds and little bugs.

Back when I was doing my deep dive into infectious agents that may be implicated in the development of MS, I read some researchers who were pretty sure that you just don't get MS without one, and the hands down favorite is EBV, although there are others. Others thought that late infection was the culprit - meaning infection in teen or early adult years, when the immune system was mature and can react more strongly. This is what I had - at 31 I contracted EBV at a party by accidentally drinking after the hostess who (I found out later) had it. :rolleyes: Yeah, who throws a party when they have mono, right?? Anyway, in my case, I kind of feel like the other risk factors I might have had would have stayed insufficient to have kicked off the process, but with a severely symptomatic case of infectious mono twisting up my immune system, all the pieces were in place. I really wish doctors would test for EBV as a standard thing. Oh well. Anyway, this is as good as anything to give you some info on EBV, if you're interested. It has lots of links at the bottom for further reading.
https://rawlsmd.com/health-articles/epstein-barr-virus-a-key-player-in-chronic-illness

By now you've probably figured out I'm something of a nerd about the MS details. Not that it'll do me or anyone any good of course. I'll be long dead before they announce a cure for MS. I mean, they still haven't got a decent handle on what combination of factors cause it. I've not read of any link to Parkinson's though, hmmm. Might go do a bit of sleuthing. ;))

And you're still just trying to wrap your head around it, I know. I found that whole newly-diagnosed period to be a bit surreal. And you're having some highly weird sensory symptoms - completely different from anything I've had with this beast. Welcome to the weirdness.
 
ksinger said:
Bummer on the mono. But not like bummer that you didn't have it, just that we don't know if you would test positive for EBV antibodies. I suspect you would though. The term "infectious mono" really only indicates a noticeable case of EBV. The estimates are around 95% of the population has contracted EBV, and most of the time that's in childhood and is subclinical, or so mild as to be indistinguishable from other childhood colds and little bugs.

Back when I was doing my deep dive into infectious agents that may be implicated in the development of MS, I read some researchers who were pretty sure that you just don't get MS without one, and the hands down favorite is EBV, although there are others. Others thought that late infection was the culprit - meaning infection in teen or early adult years, when the immune system was mature and can react more strongly. This is what I had - at 31 I contracted EBV at a party by accidentally drinking after the hostess who (I found out later) had it. :rolleyes: Yeah, who throws a party when they have mono, right?? Anyway, in my case, I kind of feel like the other risk factors I might have had would have stayed insufficient to have kicked off the process, but with a severely symptomatic case of infectious mono twisting up my immune system, all the pieces were in place. I really wish doctors would test for EBV as a standard thing. Oh well. Anyway, this is as good as anything to give you some info on EBV, if you're interested. It has lots of links at the bottom for further reading.
https://rawlsmd.com/health-articles/epstein-barr-virus-a-key-player-in-chronic-illness

By now you've probably figured out I'm something of a nerd about the MS details. Not that it'll do me or anyone any good of course. I'll be long dead before they announce a cure for MS. I mean, they still haven't got a decent handle on what combination of factors cause it. I've not read of any link to Parkinson's though, hmmm. Might go do a bit of sleuthing. ;))

And you're still just trying to wrap your head around it, I know. I found that whole newly-diagnosed period to be a bit surreal. And you're having some highly weird sensory symptoms - completely different from anything I've had with this beast. Welcome to the weirdness.
Click to expand...

With all the blood they take, they should just run that standard! I wonder if I did pick up a bit of mono at some point? My aunt had it at a point she was living at home still and we were staying there after school each day. I'd completely forgotten that! I'm sure there have been others at school through my life (23 years in school so far...) that I just didn't know about.

I like to know about things. I'd been trying to NOT research MS until seeing the specialist because there is just so much out there that I didn't want to get anxious over something I might not have had. Well, that has passed. Now I get to learn all I can!

Oh...
EKGs do hurt. The last 20 hours have been interesting. Feelings of being poked by needles under each of the pads. Fun. 4 more hours and I can get them off of me!
 
You must log in or register to reply here.
GET 3 FREE HCA RESULTS JOIN THE FORUM. ASK FOR HELP
Jewelry Blog
PriceScope-Concierge-Ad
Find prime cuts.
Top