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527589 tn?1301681778

MS? Real or imaginary symptoms? Help please

Thanks in advance for reading this.
I'm sorry for the length but I couldn't figure out how to condense it.

For a year or more prior to an April 08 total hysterectomy w/TVT-O I had some very strange symptoms. It started with extreme fatigue. I couldn't bring myself to move. I was needing to stop and sleep at the wheel cuz I couldn't keep my eyes open(was a truck driver), especially when the temp climbed. One arm or the other would become very painful midarm to shoulder and I couldn't lift it or hold anything, lasting usually 2-3 days. Stress incontinence became worse. I had episodes of vertigo many times a week(doc prescribed valium). Sometimes hand/arm movements became jerky. I found my speech slurring on occassion and couldn't remember common words. Memory retention was becoming an issue. I had cluster headaches. And sometimes while driving I would feel like I came out of myself and floated away, very scary while going 65 mph! Along with all that I was beginning the change, had endometriosis, fibroids and ovarian cysts, hence the operation.

Also during this time I had various episodes of joint pain; aching left knee(mild osteoarthritis), sticking/painful left hip(m/o w/spurs), right elbow and wrist pain(m/o), very low back pain(mild stenosis, m/o), sometimes sever neck pain and stiffness where I couldn't turn my head(m/o, spurs, mild sten). None of the bone aches happened at the same time and lasted 2-7 days each. Occassionaly I would have left side mid back burning and pain. Something always hurt. The doctor never went further than to have x-rays taken and prescribe physical therapy. The subject of depression and mental anxiety came up often. The doctor seemed to feel I had too many symptoms for it to be real physical pain and thus was leaning towards a mentally caused phenomenon. Please tell me if I'm wrong but, while the brain is a powerful thing, I don't think it can cause osteoarthritis, stenosis or bone spurs.

After the operation I acquired a new set of issues; nerve damage/compression. I couldn't sit, stand or walk for any length of time w/o excruciating pain. I was numb and tingling from the tailbone to the backs of my thighs, the entire pubic area plus inside of both thighs felt on fire, I had stabbing/shooting pains front and back, left and right side around the hips. Low back pain every few days was crippling.  My left leg would crumble under me. The doctor didn't know what was the cause of all this and sent me for epidural steroid injections which I refused. Finally, in July 08, a dr outside the HMO prescribed gabapentin and within an hour of the first dose I could sit somewhat comfortably tho I still couldn't walk far.

Within 24 hours of the first dose(300mg 3xd) I noticed black dots/strings in the vision of my left eye. Then my vision blurred. I went to the eye dr when the flashes began in september 08. I asked if the gabapentin was the cause and he was positive that it couldn't be. He said nothing was wrong with my vision. The black dots/strings and flashes continue. Most recently I find myself looking into a fog, like a cloud is rolling across my eyes. It doesn't last long but sure scares me when it happens.

A month or so into taking the gabapentin I began to tingle not only in the pelvic area but down my legs and into my toes. It was constant, not painful but annoying. In January 09 I decided the gabapentin was doing more harm than good. Endless body tingles, blurred vision, constant drunken feeling, and sleepless nights combined with lack of funds made me decide to ease off and stop the drug. My vision did not return to what it was and some days are worse than others. The pain, while not as bad, has returned. The tingles, pins and needles, have completely taken over from toe to top of head, again, some days worse than others. It never stops.

The first time the numbness crept up the left side of my neck, over my jaw, lips, tongue and finally ending at the bridge of my nose, all on the left side, I panicked and was rushed by family to the ER. They found nothing. I had no PCP to go to for follow up since I'd lost my insurance a few weeks earlier. While I'll never get used to this horrible feeling I don't panic anymore. The Indigent clinic staff, where I now go, also feels I have mentally induced medical problems because they can't figure out what's wrong either.

Since the operation I have been treated for UTI and or vaginal infections 10-12 times. The stitches at my vaginal cuff are not dissolving but working their way out, each time causing burning, infection and now a small constant amount of bleeding. I have had at least 7 manually removed by various GYNs. My bladder never empties fully. There's protien in my urine and I've been told I have stage 1 kidney disease.

There are days when it feels like bugs are crawling all over me. Some spots (front of rt shin or top of rt arm below elbow) feel extremely cold or wet. My hand/arm and now neck/head movements are jerkier, my rt thumb or arm sometimes trembles when I pick up things. I'm dropping alot of stuff. Any sudden movement or none at all causes vertigo. I can't remember from one minute to the next what I doing and at times stop mid-sentence cuz I forgot what I was saying. The fatigue is horrible. Feels like I never sleep. The stress incontinence has turned into urge incontinence, must have a bathroom close all the time. Sometimes I don't make it.  I walk, when I walk, with a cane and use the electric carts at stores. Sometimes I have trouble swallowing but not while eating.  

In the course of trying to understand what happened to me during the operation I have had MRI's and CT scans. None of my brain tho as the pain I was in was mostly in the pelvic region. The first one was of my entire spine which is where they found the mild osteo, mild stenosis and spurs. Also found was a left renal cyst and diverticulosis(found on pelvic MRI later) which were both seen again on the CT.

Boy, that brain of mine is a wonder - creating all this. You think if I go to a Psychologist they can make me think it all away? All those doctors will be happy to know that I have been driven to seek mental health assistance since they and those "imagined" symptoms conspired to drive me to the brink of madness. What I am is severly depressed and with good cause. I feel like I'm on a hamster wheel. I'm sure I've forgotten a few important bits of info but so what else is new.

So, the reason for this rant?
Did I have symptoms of MS or some other nerve related ailment prior to the operation and have they since advanced? Where can I go to be tested at little or no cost? The indigent clinic can not provide for this.  If I do have MS or other and do nothing about it can it turn life threatening? Since I am no longer a productive member of society or a celebrity will anyone care?

Any answers will be much appreciated as a little peace of mind goes a long way.
Thank you

5 Responses
Avatar universal
it actually does sound like MS, as far as I know nerologists are the ones that do that test, I have similer symptoms and my docs are treating me like its all in my head but I know its not, I am going to request another spinal because i have been told by some nurses I know that it sounds like I have MS . I hope they find out whats wrong with u my prayers will be with u
527589 tn?1301681778
Thank you so much for your responce. I can not understand why doctors insist these symptoms are mentally induced except that it removes any responcibility from them in having to actually diagnose something.
The Psychologist says it's in our body
and sends us to the Doc. The Doctor says it's in our head.
Doc sends us back to Psych.
They make lots of money. And we just wind up dead.

Heck of a scam.
Ok, I'm not in a pleasant mood. I'm hurting, confused, flat broke and desperate for answers and help.
527589 tn?1301681778
To add to an already long list, most recent developements...

In the past few days the tingling in my feet has upped a notch. Also when they get hot (shoes on too long) my feet feel sunburnt on the bottom. The other day, as I walked out into the sun, the skin across my back and down the front of both legs, below knee, began to burn. Then my vision blurred. Back in the house, taking away the heat of the sun, I continued to burn for quite some time.

There's a spot on my right forearm that is constantly frozen cold, like an icepack is permanently strapped there. I tried using a heating pad (at lowest setting) to warm it up but the spot wound up feeling burnt on the outside and still frozen inside.

On the base of my skull, just to the right side, there's a feeling of a sharp needle being pushed in over and over. It's not extremely painful but very annoying. Below that, down the length on my neck it feels like a tens unit is blasting me repeatedly for a minute or more at a time, stops, then starts again. I'm having a difficult time turning my head to the left and holding it up - like it weighs too much for my neck. When I do turn my head it sounds like rusted ball bearings.

I've had my daughter do a lot more driving as the instances of separating from myself comes more frequently, even while not driving. Then the vertigo sets in. I noticed it this morning when I turned my head. It felt like my head wanted to keep turning and made me dizzy.

Now I've had good, long talks with a mental health prof and it has been determined that I am extremely depressed due to many circumstances way beyond my control. And, while some of the strange symptoms I have experienced more recently can be attributed to a depressed state, others can not.

To any doctor out there
Or anyone who has gone thru similar and been treated and symptoms relieved

Help .. I need a direction.

Avatar universal
I was really astonished to read that you are not being treated properly and you have had to face so much trauma. The symptoms of numbness, tingling, swallowing difficulty, brain fog, vertigo, weakness of muscles, muscle twitching, jerking, cold extremities and symptoms getting worse in sun are all characteristic features of Multiple sclerosis. Since you have bone spurs, osteoarthritis and cervical stenosis, the symptoms are being aggravated. Please get an MRI of the brain. In fact you may need a series of MRI to diagnose to rule out MS.  I think you have not consulted a neurologist so far and that is why you have been made to run around. Please take the MRI reports of brain, pelvic region and spine and consult a good neurologist. Proper medication , good nutritious diet, adequate rest and moderate exercises are what will relieve you of most of the symptoms. You must not drive. In fact even if you are just sitting in a vehicle you may experience vertigo because of vestibular ataxia  which is also a feature of MS. Physiotherapy is required to relieve you of the nerve pain. Please discuss the option with the neurologist. Hope you get a proper diagnosis and treatment soon. Take care and regards!  

527589 tn?1301681778
Thank you so much for taking the time to shine some light on my dilema. I have, over the past 18 months, seen 2 Neurologists seeking help for the nerve damage done during the TVT-O surgery. Both referred me back to GYNs and refused to hear any of my other symptoms. The GYNs that I've seen say they see nothing and refer me back to Neurologists, it's never ending like the pain I'm in.  

Until I am able to see another Neurologist is there anything I can do on my own to help alleviate symptoms? I have no income and am in the midst of trying to get disability.

Again, thank you for at least listening and giving me a direction. It's more than any other doctor has done for me in over 8 years.
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