ms and rcc, all dx'd since november

sewmommy

hey everyone! i got here incidentally.. went to a chiro in august for my back pain that i thought was causing my little finger numbness..he sent me (via my pcp) to have an MRI...got referred to a neurologist specializing in MS when a big spinal lesion was found...he had another mri done which located a brain lesion (confirming my MS diagnosis)....and by default, a surprise 3cm kidney mass. Just had my post op appt yesterday - cancer. that word is just scary as hell to me. anyway, grade 2, T3...

This is all very new. urologist referred me to oncology to find out about the clinical study he's doing... guess i have a 'significantly higher' chance of reoccurance, but urologist wouldnt give me any numbers.   

anyone else have MS? anyone else in their 30's?

Jan4you

Hello and welcome~ Sorry for

Hello and welcome~ Sorry for all you are going through.. enough already, right?

I just had my left kidney removed for RCC AND I have MS.

I have been having midback pain, numbness, but not sure if it is just nerve pain, or lesions on my spine or now mets? I will discuss with this my MS neuro next appt in Feb.

I am NOT in my 30s, but a lot of my symptoms started in my 30s. Turns out a I have several other disorders, including a rare kidney disorder which just complicates things every once in awhile.

So try not to freak out. But know that there is a great site for MS, called MSWORLD.org. It is very informative and supportive. My user name there is MJan.

We'll support you as you walk this journey of the unknowns. Try not to project too far into the future and making yourself sick over all this. Its a day to day kind of thing.

Gentle Hugs, Jan

sewmommy

Jan4you said:

Hello and welcome~ Sorry for

Hello and welcome~ Sorry for all you are going through.. enough already, right?

I just had my left kidney removed for RCC AND I have MS.

I have been having midback pain, numbness, but not sure if it is just nerve pain, or lesions on my spine or now mets? I will discuss with this my MS neuro next appt in Feb.

I am NOT in my 30s, but a lot of my symptoms started in my 30s. Turns out a I have several other disorders, including a rare kidney disorder which just complicates things every once in awhile.

So try not to freak out. But know that there is a great site for MS, called MSWORLD.org. It is very informative and supportive. My user name there is MJan.

We'll support you as you walk this journey of the unknowns. Try not to project too far into the future and making yourself sick over all this. Its a day to day kind of thing.

Gentle Hugs, Jan

Thanks Jan! It's nice to find

Thanks Jan! It's nice to find another with both dx's, tho it sucks for sure. How did you end up getting diagnosed? recently? My back pressure/pain is usually focused around my spinal lesion but I'm sure I will second guess that from now on. i had an appt with my pcp today and tweaked my AD, and hopefully that helps me even out and have an opinion on things again.  I have a little sewing business but have had NO desire to touch any of it since my kidney surgery. 

Jan4you

sewmommy said:

Thanks Jan! It's nice to find

Thanks Jan! It's nice to find another with both dx's, tho it sucks for sure. How did you end up getting diagnosed? recently? My back pressure/pain is usually focused around my spinal lesion but I'm sure I will second guess that from now on. i had an appt with my pcp today and tweaked my AD, and hopefully that helps me even out and have an opinion on things again.  I have a little sewing business but have had NO desire to touch any of it since my kidney surgery. 

Good to hear from you too!
I

Good to hear from you too!

I was on a cholesterol med since I had a stent put in Nov 2012. At my check up in Sept, my liver tests came back abnormal.  Thought it may be the supplement I was trying, but it wasn't. It remained high. So an ultrasound was performed to get a look at my liver.

Well didn't know they look at ALl organs in abdomen, and when she went over to my left side, a little voice inside said "They will find something wrong with the Left Kidney. Thinking it was my Gitelman's disorder, which is that rare kidney problem that spills out electrolyties. Well, turns out I have a 4 cm tumor suspicioius for being a neoplams. Met with the Urologist AFTER coming onto this site and he told me it was small, contained and doing a partial nephrectomy not recommended cause of its placement between the Artery and Vein.

So Dec 30th had the left kidney removed via robatic. I had already had a robatic surgery so I knew the recovery was not that hard for me.

What I didn't know is that with one kidney and this Gitelmans I could no longer take ANY NSAIDS. I had this good combo of Diclofenac (NSAID slow release) and Baclofen for my spasticity and now cannot take most pain meds. Going to see my MS neuro in Feb and see if I can try Lyrica or Gabapentin which I have had in past.

Not sure if I should ask about getting an MRI of my cervical/thoracic area as $ is tight for me on disability income only. I have had this mid back pain for so long. And my legs tighten up and get spasms there as well. NOt sure if all this is spasticity/neuropathy of lesions.

May I ask what your symptoms are specifically for your spinal lesion? Where exactly is your lesion located if you dont mind me asking?

And its because of your stage of lesion is that why you need to see an oncologist? I'll will only be followed for 2 years as the pathology report states from the fatty tissue tested, not mets. I just am not sure if my back pain is from METS or Lesion from my MS or.. just neuro type pain. Geez..

Not to be nosy, but I used to work in mental health/substance abuse most of my career. Are you on an AD for depression? Don't forget that the brain likes good nutrients AND to reduce any inflammation which could cause depression. AND meds can lead toward depression. Just having the brain "malnourished" can cause all kinds of mental health symptoms. Trust me, youll never hear docs tell you this.

Stay in touch ok?

Jan

Jan4you

Jan4you said:

Good to hear from you too!
I

Good to hear from you too!

I was on a cholesterol med since I had a stent put in Nov 2012. At my check up in Sept, my liver tests came back abnormal.  Thought it may be the supplement I was trying, but it wasn't. It remained high. So an ultrasound was performed to get a look at my liver.

Well didn't know they look at ALl organs in abdomen, and when she went over to my left side, a little voice inside said "They will find something wrong with the Left Kidney. Thinking it was my Gitelman's disorder, which is that rare kidney problem that spills out electrolyties. Well, turns out I have a 4 cm tumor suspicioius for being a neoplams. Met with the Urologist AFTER coming onto this site and he told me it was small, contained and doing a partial nephrectomy not recommended cause of its placement between the Artery and Vein.

So Dec 30th had the left kidney removed via robatic. I had already had a robatic surgery so I knew the recovery was not that hard for me.

What I didn't know is that with one kidney and this Gitelmans I could no longer take ANY NSAIDS. I had this good combo of Diclofenac (NSAID slow release) and Baclofen for my spasticity and now cannot take most pain meds. Going to see my MS neuro in Feb and see if I can try Lyrica or Gabapentin which I have had in past.

Not sure if I should ask about getting an MRI of my cervical/thoracic area as $ is tight for me on disability income only. I have had this mid back pain for so long. And my legs tighten up and get spasms there as well. NOt sure if all this is spasticity/neuropathy of lesions.

May I ask what your symptoms are specifically for your spinal lesion? Where exactly is your lesion located if you dont mind me asking?

And its because of your stage of lesion is that why you need to see an oncologist? I'll will only be followed for 2 years as the pathology report states from the fatty tissue tested, not mets. I just am not sure if my back pain is from METS or Lesion from my MS or.. just neuro type pain. Geez..

Not to be nosy, but I used to work in mental health/substance abuse most of my career. Are you on an AD for depression? Don't forget that the brain likes good nutrients AND to reduce any inflammation which could cause depression. AND meds can lead toward depression. Just having the brain "malnourished" can cause all kinds of mental health symptoms. Trust me, youll never hear docs tell you this.

Stay in touch ok?

Jan

P. S.
Oh forgot to mention

P. S.

Oh forgot to mention that because my cholesterol was good, it was the medication causing my liver enzymes to go high. I figured that out and sure enough after reduing the dose, it started to come down to normal range. AND my extra NEW spasms were not just spasticity, BUT a side effect of cholesterol meds. Turns out women past menapause should NOT be on cholesterol meds as it leads to pre-diabetes or diabetes II.

Jan

NanoSecond

Jan4you said:

P. S.
Oh forgot to mention

P. S.

Oh forgot to mention that because my cholesterol was good, it was the medication causing my liver enzymes to go high. I figured that out and sure enough after reduing the dose, it started to come down to normal range. AND my extra NEW spasms were not just spasticity, BUT a side effect of cholesterol meds. Turns out women past menapause should NOT be on cholesterol meds as it leads to pre-diabetes or diabetes II.

Jan

Cholesterol is not the enemy

Jan.  It actually turns out that NO women should ever be put on statins at all.  And very few men for that matter.  It would take far too much space to explain why here - but if you are interested, start with this excellent book: "The Great Cholesterol Con" by Dr. Malcolm Kendrick.  And you can check out his blog for even more recent research: 

http://drmalcolmkendrick.org/

He is just one of the many independent voices who have been trying to alert an unsuspecting public to what the science really shows.

Just say no to statins.  Unless you are a middle-aged male who has already suffered a heart attack.  In that case, maybe.

Jan4you

NanoSecond said:

Cholesterol is not the enemy

Jan.  It actually turns out that NO women should ever be put on statins at all.  And very few men for that matter.  It would take far too much space to explain why here - but if you are interested, start with this excellent book: "The Great Cholesterol Con" by Dr. Malcolm Kendrick.  And you can check out his blog for even more recent research: 

http://drmalcolmkendrick.org/

He is just one of the many independent voices who have been trying to alert an unsuspecting public to what the science really shows.

Just say no to statins.  Unless you are a middle-aged male who has already suffered a heart attack.  In that case, maybe.

Thanks for your warning and

Thanks for your warning and information. I watched Dr Sinatra, well known cardiologist on CCN interview with another Cardio doc and Sanja Gupta. He told how many of his collegues are not trained to know this information. He wrote a book on the Myth of Cholesterol meds.

Even if, I have a long history of sensitivities and reactions to many meds due to my other conditions. Not only did this Cholesterol med raise my liver enzymes, but I had the side effects and two treating MDs never mentioned the spasms I was having could be related. Go figure!

Yes, can count on you.. thanks again!!

Jan

NanoSecond

Jan4you said:

Thanks for your warning and

Thanks for your warning and information. I watched Dr Sinatra, well known cardiologist on CCN interview with another Cardio doc and Sanja Gupta. He told how many of his collegues are not trained to know this information. He wrote a book on the Myth of Cholesterol meds.

Even if, I have a long history of sensitivities and reactions to many meds due to my other conditions. Not only did this Cholesterol med raise my liver enzymes, but I had the side effects and two treating MDs never mentioned the spasms I was having could be related. Go figure!

Yes, can count on you.. thanks again!!

Jan

You are most welcome.

I am so glad to hear that you finally found out the truth.  So many people are suffering daily from weird muscle pains, spasms, and fatigue, etc. but still have no idea why. Some are experiencing memory and cognitive issues - even cases of amnesia.  For a rare few others it is far worse.  All of these side effects are quite well known and documented - internally - at the various pharma companies that manufacture the stuff.

At the very least, any doctor who insists on prescribing a statin but does not also prescribe taking CoEnzyme Q10 at the same time is now borderline criminal in my book.

sewmommy

Jan4you said:

Good to hear from you too!
I

Good to hear from you too!

I was on a cholesterol med since I had a stent put in Nov 2012. At my check up in Sept, my liver tests came back abnormal.  Thought it may be the supplement I was trying, but it wasn't. It remained high. So an ultrasound was performed to get a look at my liver.

Well didn't know they look at ALl organs in abdomen, and when she went over to my left side, a little voice inside said "They will find something wrong with the Left Kidney. Thinking it was my Gitelman's disorder, which is that rare kidney problem that spills out electrolyties. Well, turns out I have a 4 cm tumor suspicioius for being a neoplams. Met with the Urologist AFTER coming onto this site and he told me it was small, contained and doing a partial nephrectomy not recommended cause of its placement between the Artery and Vein.

So Dec 30th had the left kidney removed via robatic. I had already had a robatic surgery so I knew the recovery was not that hard for me.

What I didn't know is that with one kidney and this Gitelmans I could no longer take ANY NSAIDS. I had this good combo of Diclofenac (NSAID slow release) and Baclofen for my spasticity and now cannot take most pain meds. Going to see my MS neuro in Feb and see if I can try Lyrica or Gabapentin which I have had in past.

Not sure if I should ask about getting an MRI of my cervical/thoracic area as $ is tight for me on disability income only. I have had this mid back pain for so long. And my legs tighten up and get spasms there as well. NOt sure if all this is spasticity/neuropathy of lesions.

May I ask what your symptoms are specifically for your spinal lesion? Where exactly is your lesion located if you dont mind me asking?

And its because of your stage of lesion is that why you need to see an oncologist? I'll will only be followed for 2 years as the pathology report states from the fatty tissue tested, not mets. I just am not sure if my back pain is from METS or Lesion from my MS or.. just neuro type pain. Geez..

Not to be nosy, but I used to work in mental health/substance abuse most of my career. Are you on an AD for depression? Don't forget that the brain likes good nutrients AND to reduce any inflammation which could cause depression. AND meds can lead toward depression. Just having the brain "malnourished" can cause all kinds of mental health symptoms. Trust me, youll never hear docs tell you this.

Stay in touch ok?

Jan

Jan, i would definitely

Jan, i would definitely discuss your back pain and lesion concern with your neuro - might send you for the MRI and get it covered by insurance. Was your surgery laproscopic too?  im a month out now and im still having pain.

My lesion is between c5 and c6..very obvious on my mri even to me... it feels like i need my back cracked, with pressure and discomfort. i still have superficial numbness in my left middle/ring/little fingers and outside of my left forearm. i get inappropriate itching and sensations in my hand/forearm sometimes too.

ive been referred to oncology because of my kidney tumor stage, but not just to be followed - the oncologist that specializes in urological cancers is running a clinical trial that i may qualify for. i can pick which dr i want to read my xrays and scans if i dont join it.

ive been on ADs for quite some time.. not sure if my meltdown was due to the tecfidera, post-cancer/surgery, or the crazy combo! my pcp bumped up my prozac a little and told me to take it at night..adding metformin xl this week in the morning. i've always responded quickly to prozac (changes or a missed dose) so im not surprised i feel calmer already.

i found a yoga studio locally that does a free guided meditation group every week.. cant wait to check it out wednesday!