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possible MS symptoms and health care frustration


IfIOnly
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Okay, here goes.  I really liked my Dr.  I felt heard and helped today.  She was so compassionate. Gosh, I liked her.  

 

I'm doing a fasting blood draw this week so she can test for a bunch of stuff including my B12 level. I didn't do any self diagnosing so the B12 thing was at her request. She did some resistance stuff and thought maybe my left side was weaker than my right.  Didn't say much about the tingling (but asked a lot about it) and didn't mention MS to me.  

 

She referred me to an optometrist to get a current eye exam first for the vision stuff.  She did say that seeing stars. tracers, and my rare black outs (I can't remember what she officially called them) was concerning for some reason (something about the optic nerve behind the retina, I think) but that she just wanted to start with an eye exam.  My last one was two years ago.

 

The memory loss she says can be linked to depression but she felt it was pretty extreme to be just that.  She says she sees people frequently come in for memory problems and the root is depression.  So kind of unrelated, but she gave me a form to fill out that shows I have depression symptoms.  She recommended an antidepressant called cymbalta.  I do feel that I'm probably low in serotonin, but after reading all the horrible, negative experiences with cymbalta, it's just so hard to go there.  I may try more natural things like cortisol and/or 5htp.  I do know from test years ago that my cortisol and progesterone are low and those are precursers to serotonin.  I like the tests my dr. did to find that out, but his rx wasn't working.  He had me take some homeopathic tablets and a nutritional supplement of sorts.  I always meant to get a second opinion never did.  So, not sure where I'm going with that.  It seems like such an ordeal: what way to go, what to take.  So around and around we go.  It would be wonderful to get this figured out someday though. 

 

I told her about the low cortisol in the past and she wants to test me for addison's disease.  She said she didn't think I fit the profile totally, but just wanted to rule that out.

 

It's great to have the ball rolling.  If there isn't anything major found or even if there is I do want to try the dietary and other suggestions here,especially before taking anything with major side effects.  It's just great to know that the biggies are being investigated and being ruled out, as well.

 

Thank you all for the support and suggestions.  You've been a real blessing.  Thank you,

 

 

 

 

 

 

 

 

 

 

 

 

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If it is a b12 deficiency and you happen to have the MTHFR gene, which isn't all that uncommon, you need a specific type of b12 or your body will not be able to absorb it properly. I'd second or third looking into the Wahls Protocol, the doctor who started this protocol used it reverse her MS they are doing clinical trials as we speak. The trials are looking very promising and the diet the version of the protocol they are following isn't the strictest version. Good luck to you, rest up and take care of yourself.

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If it is a b12 deficiency and you happen to have the MTHFR gene, which isn't all that uncommon, you need a specific type of b12 or your body will not be able to absorb it properly. I'd second or third looking into the Wahls Protocol, the doctor who started this protocol used it reverse her MS they are doing clinical trials as we speak. The trials are looking very promising and the diet the version of the protocol they are following isn't the strictest version. Good luck to you, rest up and take care of yourself.

 

Hm, I wonder if my Dr. test for MTHFR is blood work shows low B12 levels.  I'll keep this info. in mind if tests are wonky.  Thank you.

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If it is a b12 deficiency and you happen to have the MTHFR gene, which isn't all that uncommon, you need a specific type of b12 or your body will not be able to absorb it properly. I'd second or third looking into the Wahls Protocol, the doctor who started this protocol used it reverse her MS they are doing clinical trials as we speak. The trials are looking very promising and the diet the version of the protocol they are following isn't the strictest version. Good luck to you, rest up and take care of yourself.

 

 

My library has the Wahls Protocol book, and I just requested it.  I'm looking forward to it, especially after reading the reviews and the Drs story. Thanks again.

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glad you can see someone!  i have used dr. wahl's diet, "eating for your mitochondria", with great success.

 

i do not have a diagnosis.  

 

however, supplements of potassium and magnesium and vitamin D dealt with the dizziness and lethargy.

eating her diet, esp. kale every day, has helped the pain a lot.

 

and when i am doing it all, there is no tingling or itching, either :)

 

let us know how it turns out!

ann

 

eta: however, nothing i have done so far has helped the tendency for my hip to send me off in a random direction at random times.  (getting out of the car is the most exciting ;)

i am working with strengthening muscles to see if that makes a difference. 

 

Is the Minding My Mitochondria book similar to the Whals Protocol also by Dr Terry Wahls?  

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Minding my Mitochondria is, as I understand it, mainly the science about how she came up with the protocol.  The Wahls Protocol  (I have just finished reading it) is a detailed explanation of how to use the stuff she has learned to nourish your mitochondria. Pedal to the metal kinds of things, with a three stage ramp up.  It's excellent.  We are using her protocol to help my husband heal brain damage from several "ischemic episodes" over the last 18 months, and just generally to improve our health.  :)

 

Is the Minding My Mitochondria book similar to the Whals Protocol also by Dr Terry Wahls?  

 

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  • 4 months later...

Well...I've been waiting for some answers to update but six months later and I finally was given a referral from my clinic to a neurologist! Ive been waiting many weeks for the appt. to be scheduled though, but at least it's closer. :) The numbness is in my face and back now. Just sort of taking one day at a time staying busy and waiting. :)

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Well...I've been waiting for some answers to update but six months later and I finally was given a referral from my clinic to a neurologist! Ive been waiting many weeks for the appt. to be scheduled though, but at least it's closer. :) The numbness is in my face and back now. Just sort of taking one day at a time staying busy and waiting. :)

 

Sorry to hear you are still having symptoms but glad that you are getting closer to seeing a neurologist. I hope you get the answers you need and can start feeling better soon. Please keep us posted on how you are doing. :grouphug:

 

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Hi Lavendar Girl, this is a super quick post as I'm heading out the door..

A very close friend of mine was diagnosed with MS and had it reversed. It was dental related for her. Just thought this information might give you something to consider..



Danelle -

"My first episode of Multiple sclerosis arrived 6 months after my first root canal therapy. I continued to have about two episodes per year for a further 5 years, then I had the tooth extracted. My main reasons for my decision to have the tooth removed were as follows:

 

·         There are bacteria in root canals that favour destruction of the nervous system and many other systems, resulting in the creation of autoimmune reactions.

·         Just the presence of dead tissue will cause the immune system to launch an attack. Infection, plus the autoimmune rejection reaction, causes more bacteria to collect around the dead tissue. Every time a person with a root canal bites down, these bacteria are flushed into the blood stream, and they start looking for a new home. Chemotaxis, or the chemical attraction of a specific bacteria for a specific tissue, assists the anaerobes in finding new quarters in the heart, nervous system, kidney, brain, etc., where they will perform their primary damage.

 

 

 

I havenĂ¢â‚¬â„¢t had an episode since. It has been over a year and a half since the extraction."


This is her story -

http://www.msdietforwomen.com/beating-ms-without-medication-is-possible

 

This link shows the legions on her brain, and a later scan which shows them gone -

http://fedup.com.au/factsheets/symptom-factsheets/multiple-sclerosis-and-diet

 

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Well...I've been waiting for some answers to update but six months later and I finally was given a referral from my clinic to a neurologist! Ive been waiting many weeks for the appt. to be scheduled though, but at least it's closer. :) The numbness is in my face and back now. Just sort of taking one day at a time staying busy and waiting. :)

So sorry to hear you are still not well, but optimistic and getting into a specialist.  

 

(((({Hugs)))))

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Hi Lavendar Girl, this is a super quick post as I'm heading out the door..

 

A very close friend of mine was diagnosed with MS and had it reversed. It was dental related for her. Just thought this information might give you something to consider..

 

 

 

Danelle -

 

"My first episode of Multiple sclerosis arrived 6 months after my first root canal therapy. I continued to have about two episodes per year for a further 5 years, then I had the tooth extracted. My main reasons for my decision to have the tooth removed were as follows:

· There are bacteria in root canals that favour destruction of the nervous system and many other systems, resulting in the creation of autoimmune reactions.

· Just the presence of dead tissue will cause the immune system to launch an attack. Infection, plus the autoimmune rejection reaction, causes more bacteria to collect around the dead tissue. Every time a person with a root canal bites down, these bacteria are flushed into the blood stream, and they start looking for a new home. Chemotaxis, or the chemical attraction of a specific bacteria for a specific tissue, assists the anaerobes in finding new quarters in the heart, nervous system, kidney, brain, etc., where they will perform their primary damage.

I havenĂ¢â‚¬â„¢t had an episode since. It has been over a year and a half since the extraction."

 

 

This is her story -

 

http://www.msdietforwomen.com/beating-ms-without-medication-is-possible

 

This link shows the legions on her brain, and a later scan which shows them gone -

 

http://fedup.com.au/factsheets/symptom-factsheets/multiple-sclerosis-and-diet

 

 

Oh cr@p. I'm getting a root canal in a rew weeks. I either have to pull it or the root canal. :/ I ready have a friend who had a stroke days after a root canal and the same bacteria that is in the mouth was found in her heart after being very sick for years after the stroke so I was already on edge about the rc. Why isn't anything easy.

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Oh cr@p. I'm getting a root canal in a rew weeks. I either have to pull it or the root canal. :/ I ready have a friend who had a stroke days after a root canal and the same bacteria that is in the mouth was found in her heart after being very sick for years after the stroke so I was already on edge about the rc. Why isn't anything easy.

 

Yeah, sorry to be the bearer of bad news. My dentist also mentioned that I may need one, and it is a tooth near the front.

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They were fine. *shrug* I took sublinguals with no improvement. I have an appt. with a neurologist now in a few weeks though.

Did they tell you the number? Or just say they were fine? My doctor told me mine was fine, but I had 5 items that were flagged on my blood results. Low iron, B12 was off, folate was off, and a couple others. I was having numbness in my legs and face, along with a bunch of other health issues - shortness of breath, heart palpitations, vertigo, and exhaustion. I started taking B12, B-complex, folate, zinc, magnesium, vit. c, and iron. All health issues have gone away.

 

A lot of doctors say your B12 is fine if you fall in the range, usually 150 - 900. The author of the book, Could It Be B12?, says that bottom number should really be a 500 or more. She says many start having MS-like symptoms/nuerological symptoms below that 500 point. And for some, sublinguals may not be enough, shots may be necessary, or the addition of folate and iron are necessary, in order to see health benefits.

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  • 2 weeks later...

I had my neurology appt. today, and what a serious waste of time.  1 doctor of duty, 3 patients in the waiting room, not sure how many in the patient rooms. He  maybe15-20 minutes with me and my dh and said that it's probably my fibromyalgia and his rx was exercise. He said because my reflexes were good and other things that didn't fit that it's not MS or any other neurological diagnoses. I had no idea that burning sensations could be linked to fibro.? I'll have to look into that.  He did say that he could request for my insurance to cover a MRI if I wanted, but that because he doesn't think it's anything neurological then it most likely wouldn't get covered.  I have lots of natural stuff to try that may work, so I'll just aggressively try the suggestions in this thread and start some regular exercise and see how that goes. Thanks for the support and suggestions.

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I have some weird neuro symptoms and have had full work ups and still don't know the cause. I figure either it's nothing (in which case I don't need to worry) or it's the start of something that will show up in 10 years or so (in which case I don't need to worry about it now).

In your place, I'd see if I could ignore it... and if not, I'd go to a university hospital for a full work up. But be prepared to pay! MRIs and nerve studies and biopsies and such are pricey. Honestly, I think my money could have been a bit better spent since most of the results were negative. Still, sometimes reassurance is good.

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I had similar symptoms and I had some nutritional things off and anxiety/depression (this was post partum).   I do think some people are more sensitive to nutrition levels than others and numbers that may look ok in one person may not feel great in another. 

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Oh darn, I just caught up on this.  I had a weird variety of symptoms over the course of a year and I had a more luck working with some natural practitioners and cleaning up my diet and exercising over time.  I had a bunch of inconclusive testing.

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Sounds like you have been dx'd with Fibro in the past and had success with a GF & DF diet changes-correct? I would suggest based on that info and the other symptoms you have listed that you look into Lyme Disease. Here is a link to a very comprehensive list of symptoms:

 

http://www.lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf

 

Info from the CDC, NIH, and Mayo tends to be inaccurate in regards to Lyme and the co-infections. The incidence of a bulls-eye rash is one example.

 

Lyme is often misdiagnosed as Fibro, CFS, MS and many other things. Diagnosis can come decades after infection.

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Sorry you don't have many answers - some doctors are so frustrating. Did he say anything about sensory peripheral neuropathy? I've finally discovered that gluten gives me neuropathy/restless leg syndrome (all over my body though!) - but I also have autoimmune thyroid issues so that is a contributing factor as well. Sugar is inflammatory for me, too. :( Boo. Hopefully you can find some triggers and then find some relief. Diet changes and lifestyle changes are hard and take time, but hopefully they will work for you. Don't give up!!

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If you haven't gotten one already, I second getting an ANA test which can help diagnose many autoimmune diseases. I've been going through a very similar health situation over the past year, with numbness/tingling as one symptom, and, after going through a battery of tests, including an MRI to check for MS, my doctor realized that we hadn't run an antibody panel. Bingo. Turns out that I have an early stage connective tissue disease along with secondary Raynauld's. I'm thankful that my doctor was so proactive about figuring out what was going on. Autoimmune diseases can be very difficult to pin down and it can take years to get a diagnosis.  

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In 6/2010 my b12 levels were 626 and in 6/2014 my B12 was 621. The ranges on the test results are from 180-914 and 211-946.  It looks like I'm okay, right?

 

sophiasapientia, did your PCP order that test or did you get it through a specialist?

 

Thanks to everyone for the encouragement and advice. It's just so sad and discouraging that the Dr. only spent about 15 min. with me today and told me just to exercise. :confused1:  My ears inside are burning now (for the past several weeks) and the burning is so intense and all over. At this rate, I'm just scared how I'll be in another 6 months. Trying to get a helath plan made with Dhs help and figure out what's next.

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In 6/2010 my b12 levels were 626 and in 6/2014 my B12 was 621. The ranges on the test results are from 180-914 and 211-946. It looks like I'm okay, right?

 

sophiasapientia, did your PCP order that test or did you get it through a specialist?

Yes, I think you can rule out B12 level issues with numbers in the 600s. (Not a doctor, of course, but I would not chase that one any farther.)

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I'm really sorry the neuro blew you off.

I'm frustrated for you.

 

I'll mention my underlying findings, in case any of this is possible for you:

 

low vitamin D

sleep apnea

low coq10 (secondary to a presumed metabolic condition; I take epic4health's brand of coq10; my son's doctor said the brand matters).

low progesterone

I now have thyroid issues, but didn't at the time of my original nervous system crash (lots of tingling, numbness, twitching; dizziness; fatigue)

 

Is there an integrative medicine or similar doctor specialty in your state? Someone who would dig deeper.

 

I'd ask for the MRI, with a detailed listing of your symptoms presented if you can't get a new neurologist on board. Ugh. I'm sorry.

 

 

 

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I'd get the MRI.  My mother had a fibro diagnosis for 15 years before a big episode forced the doctors to take another look.  The lesions on her brain point to her having had MS for at least 20 years...without a diagnosis.  Get the MRI, rule out the MS and then move on to other protocols.

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I'm just now seeing reading this entire thread and wanted to offer you some encouragement. I am sorry you are going through this. Medical issues can be so difficult to diagnose sometimes. The length of time it takes to get into the specialist is ridiculous! Then when they don't sped enough time to evaluate your case and rush a decision, it is rather frustrating. It sounds like you have been given good advice from everyone on the board!

 

I would encourage you to ask your GP for a referral to a new neurologist for a second opinion. There is no reason for you to get it on your own and have that expense. Pursue that direction. I have had fibromyalgia for over 10 years and tingly nerves all over your body, as you are describing, is NOT a typical symptom.

 

The ANA test can be ran by your GP, but typically the specialist, such as an endocrinologist or a rheumatologist are the experts at it.

 

Hope you find some answers soon!

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 I have had fibromyalgia for over 10 years and tingly nerves all over your body, as you are describing, is NOT a typical symptom.

 

 

WebMD says that numbness and tingling is one of the symptoms. http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms It has been one of my symptoms in the over 20 years I've been diagnosed with fibro and I've had thorough neurological and rheumatological exams and testing.  OP - the single most helpful specialist I ever saw was a rheumatologist who was able to direct me to all the tests and specialists that I needed to give me a full evaluation.  

 

Fibro is not my only health problem, but there are many things which have been ruled out, leaving fibro as the only cause of some symptoms, including some of my neurological type symptoms.  

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sophiasapientia, did your PCP order that test or did you get it through a specialist?

 

Thanks to everyone for the encouragement and advice. It's just so sad and discouraging that the Dr. only spent about 15 min. with me today and told me just to exercise. :confused1:  My ears inside are burning now (for the past several weeks) and the burning is so intense and all over. At this rate, I'm just scared how I'll be in another 6 months. Trying to get a helath plan made with Dhs help and figure out what's next.

 

My PCP ordered the initial test and, based on the results, referred me to a rheumatologist who made the diagnosis. The ANA is just a basic blood test but worth it to rule stuff out and in.  (My mom has fibro so, when nothing was showing up via other tests, my doctor and I thought that I might have that too but that wasn't it for me.)  

 

I am so sorry that you are going through this and hope you have some answers soon Ă¢â‚¬Â¦Â 

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Yes, since the ANA is a simple, relatively inexpensive test with a quick turn around, I'd get that ASAP &, if nothing comes up, really push hard for the MRI. 

 

Other tests my PCP ordered to try to figure out why I was having tingling/numbness included an Electromyography (EMG) and a sleep study. (Sleep apnea can present differently in women with tingling/numbness being a symptom.) 

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Also, definitely get tested for lymes disease. Unless you live in an area where there is no lymes disease.

I just want to add that lyme disease is in all 50 states. Lyme is everywhere and it would be nice if the cdc would recognize that it is an epidemic.

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WebMD says that numbness and tingling is one of the symptoms. http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms It has been one of my symptoms in the over 20 years I've been diagnosed with fibro and I've had thorough neurological and rheumatological exams and testing. OP - the single most helpful specialist I ever saw was a rheumatologist who was able to direct me to all the tests and specialists that I needed to give me a full evaluation.

 

Fibro is not my only health problem, but there are many things which have been ruled out, leaving fibro as the only cause of some symptoms, including some of my neurological type symptoms.

Well....I guess I'm learning something new today!

 

Even with it being a symptom of fibro, I think she should still pursue finding answers with a MRI. I think all diagnotic tests should be performed before I would consider it to be fibro, just because I wouldn't want a neurological disorder to be missed.

 

My reason for saying she should get a second opinion is becasue her neurologist stated that it would not be covered by insurance because HE didn't see any neurological symptoms. HIS opinion will cause the insurance to deny the claim, whereas, hopefully a new neurologist may have a different opinion.

 

I agree witht he other posters about purrsuing the ANA testing as well, maybe even first, being as it is a fairly quick test, with minimal expense.

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Well....I guess I'm learning something new today!

 

Even with it being a symptom of fibro, I think she should still pursue finding answers with a MRI. I think all diagnotic tests should be performed before I would consider it to be fibro, just because I wouldn't want a neurological disorder to be missed.

 

My reason for saying she should get a second opinion is becasue her neurologist stated that it would not be covered by insurance because HE didn't see any neurological symptoms. HIS opinion will cause the insurance to deny the claim, whereas, hopefully a new neurologist may have a different opinion.

 

I agree witht he other posters about purrsuing the ANA testing as well, maybe even first, being as it is a fairly quick test, with minimal expense.

I do agree that she should continue to press for more testing and more receptive doctors.  Fibro is still a diagnosis of exclusion, though the current theory is that it is a disorder of the central nervous system where it is oversensitive.  Unfortunately many rheumatologists no longer treat it because they consider it outside their specialists and neurologists don't see it as a classic neurological issue.   

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I was very sick when my B12 level was in the low end of normal. I had a great doctor who treated my symptoms and not the numbers, and I believe it saved my life. I've been on injections for seven years. Don't accept "in the normal range" for B12. Ask for the number.

I agree with this! I was having numbness in my legs and face this summer, along with a host of other health issues. I had B12 levels tested, along with folate and ferritin. I wish my doctor would have known what to do to treat me, but they didn't. I did a lot of research myself and have found a good cocktail of vitamins that has made a huge improvement in my health.

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Thanks all. I've had a sleep study and have no issues there. I called my PCP and asked her nurse for a ANA and mentioned the possible rheum. referral. She'll get back to me after talking to my Dr. I called and left a msg. at Neuro. and asked for them to send the referral request for an MRI. 

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  • 2 weeks later...

My MIL just left this morning after a week visit which kept me distracted from the MRI tomorrow, but now I'm dealing with major anxiety...about what could be found incidentally. Can someone tell me if it's possible to have cancer but have good blood work? I am so dang exhausted and have a lymph node that's painful recently which I've never experienced. Dh has though and it came and went no biggie. Not much of a worrier but am really struggling right now. I'm sure that's somewhat normal? Ugh.

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My dd's brain tumor did not affect her blood work initially. Not what you want to hear, I know, but her BT grew exponentially in a short period of time. This doesn't sound like that.

 

Many people have swollen lymph nodes without serious illness.

 

Keep yourself busy---this is a great time to start a good book series, watch Netflix way into the night, and/or eat cupcakes.

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Thank you so much. Dh is getting us a movie, wine, and chocolate and being such a sweetheart. Only the MRI is tomorrow and the followup is the next day. I don't know how I'll get through this but will be relieved when it's all over and probably find nothing big at all. It's just the not knowing that's the toughest.

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My MIL just left this morning after a week visit which kept me distracted from the MRI tomorrow, but now I'm dealing with major anxiety...about what could be found incidentally. Can someone tell me if it's possible to have cancer but have good blood work? I am so dang exhausted and have a lymph node that's painful recently which I've never experienced. Dh has though and it came and went no biggie. Not much of a worrier but am really struggling right now. I'm sure that's somewhat normal? Ugh.

I have had hurting ones before. If I recall, the hurting sort are usually infection based/not worrisome for cancer. I'm sorry you're, understandably, anxious.

 

Thank you so much. Dh is getting us a movie, wine, and chocolate and being such a sweetheart. Only the MRI is tomorrow and the followup is the next day. I don't know how I'll get through this but will be relieved when it's all over and probably find nothing big at all. It's just the not knowing that's the toughest.

I'm glad you're going to have an answer soon. :grouphug:

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