Numbness from the waist down

[RickyMalin]

Hello there,

I have been reading over and doing some research on the net to find answers or people with answers who have experienced the same issue that i have at the minute.

I am Male, 27 years old and an active person.

From Wednesday (2nd April 08) i have had a numbness sensation from my waist down to my feet, and this includes all areas..
It started off with a slight pins and needles feeling in my legs, but has gradually began to get worse.
I went to my Doctor last friday the 5th April who examined me and came to the conclusion that i have a trapped nerve. And that was it - he sent me on my way and said give it a few days.
I didn't believe that a trapped nerve could cause so much uncomfort!

I have a history of blood clotting due to a blood disorder which i was diagnosed with some years back ( Factor V Leiden Mutation ) I was prescribed Warfarin which i took for a while until the Doctor said i didnt need to carry on taking them, i havent taken Warfarin for roughly 6 or 7 years now.
My last complaints of anything similar to this would have been about 4 or 5 years ago when i had a slight numbness sensation like i do now, only it wasnt half as bad and only lasted for a day and i didnt go to the dr.

I went to my hospital on Monday of my own accord and after a 3 hour wait and 30 minute of being poked with a pin the Dr was baffled - Doesnt know what's causing this, told me to Monitor myself for a week and if symptoms persist to go see my GP who will refer me to a neurologist.
He did say however should i start to get any pains in my legs or impaired vision of any sort then i should go back to casualty.

I called my Dr the next day and made another Appt, re-examination and he came to the conclusion that it's not a trapped nerve, he took blood samples which i am currently waiting results, he also mentioned that the hospital should have performed an MRI scan ( What is this for?? )

This whole experience is frightening and no one seems to have any answers, i "may" need to be referred to a neurologist if the symptoms dont go away.. even if they do i want to know why they came and how to prevent them in the future!!

If anyone has experienced anything similar and has any answers i would be most grateful.

Many thanks
Ricky

[spastic]

Hello and Welcome to our forum family.  Ok, most Dr's insist on MRI's when you are having neurological symptoms such as the pins and needles and numbness.  Many different ailments and diseases can cause these things.  One of them being MS.

I am curious for the reason your Dr had you quit taking the Warfarin. I have to wonder if your blood clotting disorder is surfacing again.  My dad had autophospholipid antibodies and had to take blood thinners for the rest of his life.  I am not a Dr or anything but I have to ask you this, are you having any discoloration anywhere on your body?  Are you bruising more easily?  Are you in any pain?

Feel free to look at our health pages, they have great info in them and again Welcome.

Spastic Ada

[RickyMalin]

Hi Ada,

Thanks for the fast reply, i was 18 when i first had a blood clot in my left thigh @ the back, i was given Warfarin but only took them for 6 months as i had to go and have my blood tested each month and the Dr thought my levels were fine and took me off.

The Factor V Leiden and Clotting was obviously my frist reactional thoughts - i was worried i had another clot but that was cleared by 2 doctors and they don't seem to think this has anything to do with this.

I currently have no pain at all in any area of my body and i do not bruise easily either, i have always been very pale skinned and to be honest i havent noticed any difference.
I dont know if its my mind playing tricks on me but when looking at my legs i can see the veins more clearer than i ever have, or maybe i have just never noticed.

I just have a feeling that this is going to drag on for quite some time before i get any logical answers from my Dr.

Thanks again

Ricky

[spastic]

Okay, I want you to google livedo reticularis and see if that is what you are seeing on your legs.  I have that and in my case the veins look like purple lacy patterns on the skin.  We all have those times where we think our minds are playing tricks on us but don't sweat it, I doubt they are.  We know our bodies best.

With you having the V Leiden Mutation, I am not sure if this is any relation but there is a thing called Inherited Spastic Paraplegia, it causes some pretty unusual symptoms, mainly abnormal gait, weakness in the legs, some people perceive weakness with pins and needles.  It is also caused by a gene mutation.

[santana8]

Hi, I had a sudden onset of vision disfunction two years ago. My brain MRI showed about 10 white matter lesions. I have had MRI's every six months for the two years to look for new lesions, so far none has shown up. My dx for now is ADEM it is an acute illness that is almost identical to MS, except it is monophasic, meaning one attack with no relapses. But MS has not been totally ruled out yet, eventhough my spinal tap was negative. Anyway when I asked my neuro if he was sure that it wasn't a stroke he said he didn't see evidence of one, but that it could end up being vascular. That is not a clear enough answer for me because I have a family history of a couple of young deaths around 30 years old from blood clots. So this week I was refered to a hematologist to check my blood for inherited clotting disorders. One of those test is the factor V you mentioned. My brother was one of the ones who died at age 31 from a massive heart attack. His son, and my nephew has been dx with factor V and started on cumadin and has been told that he will be on blood thinners for the rest of his life, he is 25. His doctor told him that this may have been what his father had and just didn't know it. Two weeks ago my 28 year old cousin had a headach for three days, the third day being excrutiating.She worked in the hospital pharmacy and while at work that third day she went down to the ER because she started getting numb down one side. They found two dime sized blood clots, one on each side of her brain. They started hefrin to try to break them up. The next day she started to get some of the feeling back and they were considering letting her go home. Suddenly she started seizing and her head fell over and she went unconcious. When they scanned her again the clots had moved to her brain stem and had blocked off all blood supply to one side of her brain. They induced coma to keep her still. She never came out of it and she died 3 days later. They said the cause of the clots was a new birth control pill that she had started 6 weeks prior. They said that she may of had a clotting disorder that caused the birth control pills clot her blood. All of this is why that I am getting checked for factor V and all other blood clotting disorders. Eventhough my neuro said he didn't think that the lesions in my brain were from stroke and two years have passed, he still didn't rule out any vascular reasons. I am not willing to take that chance. I have since been reading up on the factor V and others. From what I have read about factor V and if you have been dx with it, you definately should stay on blood thinners probally for life. I don't know why your doctor took you off of them, but if I were you I woulld get a second opinion on this one. I'm not saying that this is what is going on, but factor V is a serious condition and from what I have read  it is a life long condition.

Santatna

[RickyMalin]

Ada, i searched for livedo reticularis and going by the photos on the page i can thankfully say my legs are not matching the photos. When i say i can see the veins i mean the blue colour veins just vaguely - i don't think its anything to worry about.
Just hoping that the blood tests come back with answers and that this numbness goes away before Monday so i don't have to go to hospital!

Santatna, firstly i am very sorry for the losses within your family, it must be devastating, and for the constant worry you must be going through too.

I have never really questioned as to why the Dr took me off Warfarin, i knew nothing about  it and just assumed he knew best ( I hope he still does ).
I will however be bringing it up when i see him again incase this is related to it.

I will let you know the results of my blood tests which hopefully shouldnt take too long and of any other advances which are made.

Thanks again guys, it's great to talk to people who are on a smiliar wave.
Ricky

[Quixotic1]

Hi, Welcome to our forum.  I hope we can help with the information you need and supply some company and entertainment along the way.  I am a physician, but I am here unofficially.  I was not a neurologist.   I have MS and I try to help people find information.

I also am concerned that you are not being treated for the Factor V Leiden Mutation.  The problem with not go away and is not something you'll grow out of.  I worry about a problem in your spinal cord.  A trapped nerve would have caused problems only on one side.  Having both legs numb is more suggestive of something like a spinal cord problem that goes all the way across, called Transverse Myelitis TM.   This can result from a blood clot in the spine.  It begins with numbness, but then progresses to include back pain, muscle weakness and then bladder and bowel problems.  It can develop slowly over 1 to 2 weeks sometimes.  Do you have any weakness of the legs or pain in your back at all?

I feel you must have an MRI of the spine which should include the Thoracic and Lumbar (the part of the back involving the chest and lower back) to examine the lower spinal cord and the lower back with its nerves. You also need to see a Consultant Neurologist as soo as possible.

Have you had any recent infections?

Do you have any symptoms above the waist at all?  If you do they should also do an MRI of the brain.

Hope to hear from you soon.

Quix

[RickyMalin]

Hi There,
Many thanks for the reply, currently i wouldnt say i am in any pain, just discomfort, my legs feel quite stiff as if they are hardening up or something although i am still very mobile and can move about quite easily apart from bending my legs which i can't really do, i have no pains whatsoever from the waist up, i have even got someone to apply pressure to all areas of my spine from top to bottom and i never felt any pain at all, i have had no recent infections or been ill in the last couple of months.
There is one thing that happened last month which someone said might have something to do with this, although i doubted them.
My 6 month old nephew died last month of meningitis this was obviously very upsetting and traumatic - do you think this could be an effect?
Lastly my bowel movements are normal apart from the fact that i can't feel myself going, but this goes for both ends.

Thanks

Ricky

[RickyMalin]

Can i just add that for the last couple of years and mainly in the mornings when i wake up i would sometimes have a pain in my shoulders, normally one at a time where i can barely lift it up high enough to brush my hair, but this only last for a couple of hours. I thought this was something to do with the way i sleep, could this also be related?

[spastic]

Hi Ricky, I am so sorry you lost a nephew, that is a very hard thing to take emotionally.  I have to ask this because I have a very rare form of arthritis and I really feel it when I first wake up.  Did they do an Rheumatoid Factor test or an ANA?  What kind of work do you do?  I suggest getting some physical therapy for your shoulders, you can get frozen shoulder syndrome pretty quickly.  Sorry I sound so jumbled.  

Your Friend,

Ada

[santana8]

Sorry about the loss of your nephew,That is so sad. I wondered something when you mentioned that he had meningitis. Do you happen to know what kind he had, was it viral or bacteria meningitis. I not completely sure and you might  want to research this some, but I believe that meningitis can be contagious. Were you around him while he had this? Have you had any stiffness in your neck, or light sensitivity? You said that it was one month ago and I have noticed by reading up on viruses and bacteria that a common period after exposer is 4 to 6 weeks. Like I said, I'm not completely sure about meningitis but maybe you should read up on it and see.

Santana

[RickyMalin]

Ada -  The pains in my shoulders are a normal occurence, not every day but i would say on average once a week and it's only ever one shoulder at a time, never both! I have never complained about this to the Dr before so no tests have ever been done.
I work as a call centre manager - i am up and walking about 80% of the time, it's a stressful job but not hard.

Santana - I wasnt near Zach for 2 days before he died, it was bacterial meningitis i think- (meningococcal septicaemia) and anyone who was in contact with him that day has been treated, and nope i havent experienced any stiffness or sensitivity to light at all, but thanks for picking up on that i will mention it to my Dr anyway.

[RickyMalin]

Blood results came back all normal today, Dr left a note saying " No Further Action "

I'm sittig here still numb, Dr says no further action. I give up.

[santana8]

What were the blood test for? What did he mean by no further action? Did he give you a DX? I can't believe he said no further action when you are still numb. This don't sound right to me!  What kind of doctor is this, is he a neurologist?

Santatna

[RickyMalin]

He is just my GP, i think the blood tests must have been to see if this was related to my blood condition ( Factor V Leiden ) And they all came back normal, why he didn't want to see me again i have no idea, i have lost all faith in him and the NHS.
My employer has advised me to contact Axa PPP which is my private healthcare that they pay, although they need confirmation first from my GP that this numbness is not related to my underlying medical condition before they treat me.

13 Days now and still nowhere!!

[santana8]

It is good that your blood test came back normal! I am currentley waiting on  my results from the hematologist( blood doctor) that was checked for any blood clotting disorders including factor V. They should be back by the 7th of May when my follow-up appointment with him is.  I have a lot of doctors including a primary doctor, a neurologist, a neuro- opthalmologist, a opthalmologist, a dermatologist, a hearing specialist, a phyciatrist that treats me for my anxiety/panic disorder,  this hematologist and the next one is going to be a reumatologist! I know too many doctors! The phyciatrist, primary doctor, neurologist, and opthalmologist I see regularly about every six months since this attack happened two years ago. The others are all specialist that I have been sent to for ruling out mimics of MS. Believe it or not before this happened I only went to my primary doctor for yearly check-ups and my phyciatrist for anxiety which I have had for 16 years. I am exagerating when I say it has taken all of these doctors to try to put me back together again, Just like Humpty  Dumpty! lol ! But guess what I still don't have a definite DX ! Each doctor only see's the part of you that they specialize in, for example my opthalmologist see's only two eyes waling in !  They only order test, including blood test that pertains to thier area of expertiese. If only one of them would take the time to look at the whole picture then Maybe I wouldn't be such a mystery to them all. I am not telling a lie when I tell you that I have initiated all of these visits to these specialist. If I had not they are all completely comfortable sitting around scratching thier heads ! The point I am trying to make is don't expect doctors to go above and beyoond the call of duty. From two years of this experience with them I found out that they won't keep digging unless you keep pushing them. And if they don't like to be pushed then fire them and find a doctor who doesn't mind doing his/her job. My Dx for now is ADEM, but I am still being monitored for MS. I am currentely focusing on eliminating all of the mimics that my doctors have not already eliminated.  I have good insurance or I would not have seen all of the specialist that I have seen. I don't know how the ones who are uninsured can handle all of the expense. I think everyone should have medical coverage. To me it is just plain wrong to denie a human being medical attention just because they are uninsured. In my opinion I think you need to be sent to a neurologist for the numbness. Maybe you coulld get your GP to refer you. THis numbness issue is way over your GP's head, and sometimes it is hard for doctors to admit that they don't know, it is an ego thing, I think! A good doctor will tell you if he dosen't know what the problem is. You desperately need to see a neurologist since numbness and stuff like this are there specialty! Let me know what happens. I will post the results of my blood work when it comes back. Talk to you later!

Santana

[RickyMalin]

Thanks for the messages,
I was about to give up and just live with it in hope that the numbness goes away, until i rang my Private healthcare.
They sent a letter to my dr and asked them to confirm that this wasnt related to my underlying medical condition ( Factor V Leiden ) and if it wasnt then they would go ahead and start tests on me.
My doctor rang me today and confirmed that this had nothing to do with my blood disorder but said before she faxes back the form to them she has arranged an xray for me tomorrow in my local hospital. So i am going tomorrow for an xray, don't know what for or where but i'll go anyway and try and find out as much as possible then return to my Dr if they find nothing and demand that form be faxed so that i can get my private healthcare rolling!

I'll keep you updated!
Ricky

[santana8]

That's good news! And if the x-ray shows nothing it is more than ok to ask to be sent to a neurologist and there I am pretty sure that he will do an MRI, Afterall it is not just a little numbness it is from the waist down. Don't be afraid to stand up to your doctor when you think he is not fully checking you out. Just remember no one else including your doctor knows you body and when something is wrong that you. It is unfortunate but some doctors do try to put off  a patient when the symptoms they are complaining of are very real. This happened to me with my vision. I had 20/20 Vision and the doctors thought I was making up the vision loss. Yes! one eye doctor actually told me this to my face. But  this made me angry because I knew that suddenly I couldn't see right and I knew it was real! So basically I wouldn't shut up until they ran a visual field test. It showed a quadrant defect, meaning 1/4 of my vision field was missing. This test which I insisted on was all it took to get me to a neurologist who found about 10 lesions in the white matter of my brain.

Keep pushing,
You have that right!

Santana

[RickyMalin]

Got X Ray done this morning, radiologist said he couldnt tell me anything but the Dr was lookin for any signs of nerve damage on lower spine and i asked him did he see anything he said nothing that sticks out, but the Dr would maybe spot something that he hasnt, he then told me it takes 2 weeks to get this xray and report sent to my own Dr!
I am not waiting 2 bloody weeks, i have asked my Dr to refer me to a neurologist to a nearby private clinic because i have private medical care which my employer pays for, i shall ring again in the morning because i have a list of neurologists names who work there, all i need to do is for him to refer me and i can then get the ball rolling properly!

I'll keep you updated.

Ricky

[RickyMalin]

Xray results came back yesterday, they were all clear, no nerve damage or anything the Dr could see so i have to make appt with my Dr again to talk about the next stage which i guess is a referral to a neurologist. I can't do that until Monday now.

At least we're ruling things out one by one all be it slow!

Ricky

[spunky59]

so I just read through almost all the above comments.  Have you had an MRI or not?  Check into the diagnosis Transverse Myelitis... Your symptoms of numbness, tingling sound almost like mine.. I have a large lesion in my loser spine.  They are currently weeding out all different diagnosis as well.  MS being the one they will eventually narrow in on Im afraid of.  But currently they are calling it Transverse Myelitis.  Take a look.  I'll check back on you later!  Good luck!

[santana8]

I know you already know that I too tested positive this week for the Factor V Leiden mutation. As I told you in the PM they said I only had one copy of the gene and only a slight defect. They put me on one 81mg baby asprin a day and that is all. My nephew who also has this is on coumodin and they told him he would be on it for the rest of his life. What is the difference in the treatment for different people?  How do they decide what reatment  you need? My neuro sent for the results from the Hematologist and he still says that he dosen't think that this has anything to do with the 10 white matter lesions that showed up on MRI two years ago. I picked up on something you said above. You said that they told  you if you had any pain in your legs or sudden vision changes to come in right away. I had sudden vision changes two years ago when all of this started. I wonder if this was related to having this blood clotting disorder. And if not how can my neuro be so sure? Does anyone know how he can be so sure about this? This is crazy that these doctors act like they don't have a clue what is going on. When I go back to my Hematologist to get the full explaination of the test results I am going to take along a healthy list of questions to ask him about all of this. I am tired of not getting any anwers and I am about aggravated enough to tell all of my doctors this!  I feel that two years is a little to long to keep someone just waiting and watching for the next possible clue. I mean are they not suposed to be specialist? I don't get it!

Santana

[RickyMalin]

Update!

Well guys, i don't think this is as bad as we first thought - infact going by what my Dr said and thinks, it's not even close!!

Apparently the Xray i had on my lower spine showed some sort of Disc narrowing, the report said - Disc space narrowing at L5/S1, lumbar vertebrae seem normal.. My Dr thinks this is causing my lower body to go numb although i wondered why the heck is there no back pain then?? UNTIL TONIGHT, i was sitting on my pc chair and after about an hour i started to get a pain in my lower back and bum! How weird? Or is my mind tellign me that now lol!
I have been referred at last to my private health clinic to an osteotherapist i think they are called, first appt is on the 14th May - couple of weeks away however if i didnt go private i would be waiting Months on the National Health!

Hopefully this is what the problem is and i can get it sorted!

speak soon!
Ricky

[RickyMalin]

Well, been a month on and at last i got to see a specialist who has ruled out that the disc space narrowing has nothign to do with this at all. He sent me for an MRI yesterday, i'll have to wait on the results which will be about a week.

[santana8]

Hi, I was wondering where you went! I am glad that you are finally getting at least some answers now! keep us updated on the MRI and everything!

Santana