So, here I am almost 6 months since first signs of numbness began in my finger tips.
I now have numbness in all 4 fingers on both hands, that is spreading into my hands and undersides of my forearms.
One night, 2 weeks ago, my left arm from my elbow down went completely numb...like it wasn't there.
The numbness in my fingers/hands/forearms is a combination of numbness and hyper-sensitivity...my typing is getting BAD, can't feel the keys.
I've had a slew of other weird symptoms come and go the past 6 months.
I've been diagnosed "possible MS"
Waiting for LD lab results.
The MS neurologist always asked me about tingling and issues w/ urination....the answer was always "no"
Now, the past month or so, I'm experiencing a hypersensitive twingy feeling inside my body when I have to go to the bathroom.
It's down pretty far, about where the pubis starts (bladder?)
I've always urinated a lot because I drink 70-80 ounces water plus other beverages most days.
Two times the past month, after having sex, I had to pee but it wouldn't come out.
I have been noticing not a tingling, but more like a chilled feeling in my head/scalp and left leg.
It's the feeling you get just before goose bumps, but I'm not cold, the goose bumps don't form, but the chills do.
Things really are pointing to MS......
Can anyone relate?
Posted by groovy2 (Member # 6304) on :
Babs causes most of the symptoms you list-
Check your body temp and see if it is low- babs will cause temp from 97 to 93 F - check temp several time threw the day -
Many folks here were DX with MS at some point-
Ducks thought MS at first for me too -
Tests for Lyme and Babs are not accurate so dont put much faith in results -Jay-
Posted by cantgiveupyet (Member # 8165) on :
Ive had some of the issues that you list.
The bladder and not being able to pee after sex could be a bladder spasm or your pelvic floor muscles dysfunctioning.
I used to get this odd sensation when i had to pee. It started in my head like a tugging feeling and went through my chest, some tingling in my face, and i could barely pee. Felt like it was too much on my body to pee.
Do you have a LLMD?
Posted by lymebytes (Member # 11830) on :
One very well known LLMD says MS is untreated Lyme. Does MS really exist, can Lyme turn into MS, I don't know. If you have brain lesions and are diagnosed with MS, keep in mind so do lyme patients. Only difference is that over time w/LD treatment the lesions will go away.
I have had your symptoms x 100! The neuro symptoms I have had would blow most people's minds. I have had numbness, tingling, in my jaw, teeth, scalp legs, arms,visual disturbances and more. Night time, my arms have gone dead numb, this is not that uncommon with Ld, peripheral neuropathy, dysesthesia, imbalance, vertigo, migraines and on and on and on. 10 years ago I had a brain MRI only when the vertigo and migraines had started and they thought MS, the MRI was clear. Years later - a symptoms explosion and I was found positive for LD and co-infections.
Have you seen a good LLMD and been tested for ALL tick borne diseases, all co-infections? Because it looks like things are really pointing to Tick Borne Disease!
After the "symptoms explosion" 10 years later right after having cortisone injections, I also was told once again I likely had MS, but didn't buy it and wouldn't even do the MRI again. I didn't have all the symptoms, Lyme fit and I am glad no doctor convinced me of MS, as the treatments are corticosteroids and with Lyme that is extremely detrimental and has made my situation and prognosis much worse.
Even if told I had MS from a duck, I would pursue treatment with an LLMD, it is safer and has more hope for a cure.
Also many links on MS/Lyme connection: http://tinyurl.com/25cz7v Posted by tracisuzanne (Member # 14105) on :
As always, I appreciate everyone's feedback.
Here's my concern:
Can LD symptoms be a slow gradual progressive thing?
I'm starting to BELIEVE NO ONE...not the LD camp, not the MS camp...
Ever since "MS" was first uttered by my neurologist, I've heard about the "different types" relapsing/remitting, primary progressive, etc, etc...
The VERY FIRST symptom that appeared was slight numbness on the very tips of 2 fingers.
This started the roller coaster ride of: *MD appts/lab tests
*MRIs/spinal tap (WORST EXPERIENCE EVER!)
*spending lots of $$ on an out of network LLMD specialist co-pays, LD negative test results (just found out yesterday)
*LLMD bringing up clamydia pneumoniae (CPN)-
*negative CPN tests
*LLMD recommending the Wheldon Protocol, which is the holistic tx for CPN/MS link- consists of at least 14 different supplements!!!!!!
*LLMD office- cost for co-infections testing $1800.....can't afford and NOT WORTH IT if it will most likely be negative anyway
*neurolgist in the "MS camp" discussing the fabulous sounding daily MS injections
*I could go on and on and on.......
So then many of the many weird, unspecific, pain in my butt, not that serious, feeling like a loony person, can't explain to ANYONE what is wrong w/ me, symptoms....that have pretty much gone away...except for the hand numbness.
Over 6 month's time, it has spread to all fingers except thumbs, gradually from tips to the entire length of finger, into palm of hands, now feeling slight numbness in forarm up to elbow.
Hands are SO SENSITIVE to extreme cold and hot temps...it's really starting to suck!!
The complete Left arm numbness from elbow down happened once, last 10-15 minutes.
All the other numbness has been gradual...sounds like a "primary progressive" thing to me to use the MS terminolgy.
Posted by Tracy9 (Member # 7521) on :
My husband and I both have these symptoms; he in particular experiences exactly the numbness in the arm you describe.
We have lyme, babs and bart.
Posted by justwondering (Member # 12813) on :
Hi Tracisuzanne,
I can understand your anxiety over this, but I hope it brings you
comfort to know that I experience all of those things.
I have experienced fingertip numbness, but not quite to your degree and it has never lasted very long.
I have Lyme, Babs and Ehrlich. and for years
I believed I had MS and never considered any of the above causes.
I get the same feeling in my scalp, like a deep vertical almost buzzing feeling. I almost have to rub it to make it stop and then it goes away.
I actually have never really even thought about that until I read what you wrote!
I have terrible bladder issues, from peeing every 12 minutes to not being able to pee. This is one of my worst symptoms and has been for years.
So just know that Lyme and co's, at least for me, can cause these things.
I personally believe MS is caused by Lyme or some other/similar bacteria
so please keep looking into the Lyme possibility!
Take care and keep posting:) Jackie
Posted by Tif (Member # 12701) on :
I responded to your other post about the numbness. However, I will mention this here.
I am also in line to treat Babs and Bart due to not only these symptoms, but so many of the neurological/cardiac issues I am having.
And, as I am sure you are tired of hearing, negative labs don't really mean much. I was fortunate in that some of mine showed, and I didn't even have the WB done from Igenex......had 3 ELISA'S that were all negative.
My Mom has been treated for Ehrlichiosis (years ago), and fought for a very long time over an MS diagnosis......she did go into remission after successful long term abx. None of her labs ever showed anything positive, and believe it or not, it was a vet that helped convince her Dr's to treat her........