Aa
Aa
A
A
A
Close
867787 tn?1318936230

Hello...back again after disappionting neuro visit

Hi everyone! Sorry for my absense, I just needed a break from MS for a bit. I saw the 5th neuro ( yes no#5) & was dissappionted yet again! She came in & wouldn't let me even finish a sentence , told me I don't have MS & my lesions were punctate ( 6mm is punctate???) & they were from the aging process ( I just turned 40 & my  MRI was clear 11/2 yrs before all this started....so you age that quickly?). My PCP said no to both!! He thinks thers something inflammatory going on with my CNS &doesn't quite get why the neuros say its not MS & after they rule out MS they send me on my way without trying to find out what IS going on. I saw my kidney specialist the day after the new neuros appt & was worried I would have to have a biopsy ( was told its painful). The good news is I don't have to get a biopsy but the bad news is because he said it was too late for that. He said he couldn't stick a needle in shrunken kidneys. He also thinks I have an autoimmune process going on & when I asked him if it could be peripheral neuropathy from the kidney disease he said no. He said it wouldn't account for on side being weaker than the other & wouldn't account for the eye issues or heat intolerance. He said he thinks its MS & the explantion I got fronm the neuros didn't make sense, & that it could take years for them to decide that its MS . I've been focusing al my energy & time trying to find out whats wrong with my CNS & ignored my kidney problems & now I'm paying the price. I just entered stage 4 kidney disease so I guess I'll focus on that for a while & take a break from the MS stuff for a while. With no insurance I can't afford to keep doing this anyway. I could hand a person off the street $ 200 & get the same result as I have the neuros ( Thanks for your money but I don't know whats wrong with you & don't know how to find out!). Hopefully the nephrologist will put me on a fluid pill when I see him the 11th as I'm gaining weight at record speed ( about 4 lbs/wk)! I don't know yet about dialysis & he also mentioned lupus as a possibility although I tested neg. on my ana/dna but he said neg tests results don't alsway mean you don't have something. I'll still be hanging around to offer encouragement & to keep in touch with all you wonderful folks though!! Take care & God bless!! Love Tammy
12 Responses
Sort by: Helpful Oldest Newest
923105 tn?1341827649
Hi Tammy,

Well personally if it was me, I would go and find another Neuro who will listen to you.

I cannot understand how or why these Neuros are so quick to dismiss anyone with these  problems.  Am also sorry to hear about you kidneys playing up too.  

Concentrate on one thing at a time that is my advice.

Take care tammy, and please keep us posted,
Hugs,

Debs xxxx
Helpful - 0
776614 tn?1265822754
I know how hard everything is so I'm really not sure what to tell you besides Good Luck & take care the best you can! It's so hard when you already feel horrible & all the Dr's do is make you feel worse instead of helping... AArgh! Hope you can find somebody to give you answers, atleast the other Drs seem to want to find out MORE! Seems like they all should?! But guess that would be too EASY??? LOL
Hope you have an alright day :) Live, Laugh, Love (all I know to do anymore)...
Thoughts & Hugs
Melanie - KY
Helpful - 0
Avatar universal
I'm so sorry that your neuro blew you off.  I get so mad when I hear of another one doing that.  Thank goodness you have a good pcp and kidney doctor.  I will keep you in my prayers.
Helpful - 0
867787 tn?1318936230
Thank you for your support!! Wobbly, I have 18 lesions scattered through the periventrical & subcortical regions but the one thats 6 mm is in the centrum semivole. The neuro said my lesions weren't spread out like fingers so there was no way that its MS, but my PCP & kidney Dr. disagree with her & also with the explanation of the aging process. I saw my PCP yesterday & he said 18 lesions don't just appear in 11/2 yrs from aging & without a cause especially since I'm having all these symptoms. 2 Yrs ago I could walk, now I have to use a cane & a wheelchair if its very much distance.The neuro seem to quit looking after they say no to MS. I really appreciate all of you! I don't know about dialysis yet. I see the kidney Dr on the 11th & I guess I'll find out about my bloodwork & renal ultrasound then.Evidently he thinks I have an autoimmune process going on too. I went from stage 2 to stage 4 kidney disease in 16 months. My 1st kidney specialist didn't keep up with me very well & I was told kidney disease was a slow process . My new kidney Dr was irritated that I was allowed to progress this far so quickly.
       Thank you all again! I love each & everyone one you! Thanks for the prayers & please keep them coming!! Take care & God bless!!        Love, Tammy
Helpful - 0
645390 tn?1338555377
Tammy,

I am so sorry for all you are going through! Keep on keeping on, even though it is so frustrating!  I am sorry to hear about your kidney disease. That is very scary and I am glad you have a good kidney doc.

Please take good care, and I will be thinking about you,
XO,
Michelle
Helpful - 0
738075 tn?1330575844
Tammy, I know limboland is He!!.  Keep pressing on, but for heaven's sakes, take care of those kidneys!  Will you need dialysis?

Sending warm hugs and prayers,
Guitar_grrrl
Helpful - 0
Avatar universal
Tammy, please take care of yourself. I'm so sorry you have so much going on. We're all pulling for you.

Hugs,
ess
Helpful - 0
559187 tn?1330782856
We love you Tammy and know full well what you are going through right now with these nimkumpoop neuros.  Take care of that kidney problem and put MS aside for now like you plan.  

We always need your input and encouragement and for that we hope you will stay with us.  When the right time comes, and hopefully with the help of your kidney doc, you will find a good neuro who will look beyond his/her nose for answers on your case.  

Hang in there with us while you work through this.  

Love and hugs,

Julie
Helpful - 0
572651 tn?1530999357
Tammy,
I sure wish these neuros would at least take some time and try to find the cause of your problems instead of dismissing you with the NO MS dx.  Its good you have the gp and kidney docs who will help you with those problems.  

yes, please stick around and lend a hand.  You are becoming an expert on limbo, even though you don't want to be.

be well,
Lulu
Helpful - 0
293157 tn?1285873439
this must be so frustrating for you... I'm glad you are seeing a Dr for your Kidney ..I hope things go well for you with that part.

I think you need another opinion on your results.. or more testing for Lupus etc... any mimics.. 6mm in what area of your brain...??

do you have copies of your MRI and report?  hang in there and let us know how things progress with your kidney... hope you feel better soon

take care
wobbly
dx
Helpful - 0
739070 tn?1338603402
Tammy,

So  sorry for yet another fruitless neuro experience. Your kidney doc sounds like he knows what he's doing. He is right about the Lupus and kidneys. May sure you stick with the kidney doc as Stage 4 kidney disease is nothing to mess around with.
Will the kidney doc order any tests to rule out mimics for you?

You remain in my thoughts...sending only good thoughts and wishes your way.

ren
Helpful - 0
667078 tn?1316000935
Tammy,
   I am so sorry for all you are going through.
Alex
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease