Extreme pain and numbness in legs

[Catherine V,]

HI,
I'm a 40 yr old woman who has been plagued by extreme pain that has grown worse over the past 9 or 10 years. It all started when I was about 29, my right lower leg would go numb when I walked. I also would get horrible cramps in my calf. I could stick a pin in my calf and top of my leg and foot and not feel it. It has progressed now to the point where all my muscles and joints are affected. Now, I hurt just lying in bed; I seem to have 'attacks" where I wake up in agony all the muscles in my body spasm, stiff and hurt, and my hands go numb in bed. I don't even have to move. If I reach around my back, my arm muscles and joints go into spasms. My lower back is killing me all the time. I am so stiff that I can hardly do up my clothes, I have to pick up my legs to get pantyhose on. If I walk 2 blocks, I am in agony for days. I have to stop and rest constantly as I walk, not to catch my breath, but to allow my muscles to stop cramping. My muscles (calf, both legs now), feel hard like rocks, cramp very painfully, and hurt all the way up to my lower back. If I force myself to walk, I get aching, swollen joints and muscles for weeks or months. My hands go numb, I have been diagnosed with Carpel Tunnel, but my pain far exceeds the "level" of CT that the tests diagnose. My legs and feet ache constantly. I suffer memory loss, concentration problems, cannot spell and write or speak clearly sometimes. I am having severe cognitive difficulties, I mean think of one word and I write a similar sounding word instead. I get horrible muscle spasms that have caused bruises. I am on Novo-quinine, neurontin, and szersone. I have had 2 MRIs, several CT scans, blood tests, xrays, even an Angiogram. Stress tests indicate 49% blood pressure in my right leg and 95% in the left. I was told I had a "sleepy thyroid", that it was hyper and is now hypo. (no treatment). I have seen 4 Neurologists, 1 Endocrinologist, 1 Rheumatologist, 1 Medical internist. NOw I am at a Chronic pain clinic, under the temporary care of an Anaesthesiologist. No doctor wants to keep me for long, I am told
"I can't do anything for you, go find a GP." The last Neuro is sending me to a specialist in Rare Muscular diseases at the Montreal Neurological Institute- he said I have an "exotic illness no one has heard of" . Any advice, my hands are numb as I type this and I am in agony from having walked 4 blocks two days ago.
Catherine - desperate in Montreal

[CCF Neuro[P] MD, RPS]

Dear Catherine V.:

I am sorry that I am not sure what is going on.  The symptoms are so non-specific and generalized, as I stated before I am not in a position to answer your questions.  I have no access to your test results and have not examined you.  I would suggest that you call your physician and talk to his/her office and get an office visit to be examined.  If a second opinion is needed then I would suggest seeing someone new, with all the records in hand.  Maybe a pair of fresh eyes will help.

Sincerely,

CCF Neuro MD

[Catherine V. - FOLLOW UP ON ORIGINAL POS]

Hi,

It's me again, the ORIGINAL poster......I have been in bad shape lately.

The problem in my legs is only some of the problem, it has developed over the years into more. My whole body, feet, hands, fingers, etc, is swollen and sore. Shoes, coats, neckchains,etc, from 2 yrs ago don't fit. This growth was sudden, over 3 months my clothes didn't fit. My hands are in extreme numbness and pain, my hand go numb brushing my teeth, and I get hot flaming pain all the way to my finger tips. Why would I be swollen and in such severe pain, when I was diagnosed with only "mild" carpel tunnel syndrome and my neuro refused to operate? He said my pain didn't match my symptoms. Also, I walk from my bed to the shower and my legs go numb and cramp up. I get severe muscle spasms in my abdomen, back, arms, shoulders - all over. I had two severe spasms in my legs that left bruising. I have headaches that last weeks.I am exhausted and sooo tired, I am having a hard time and am worried that I am making mistakes in my work. I was diagnosed with "thyroiditis" and told my hypothyroid state would correct itself. I am still gaining weight, it is impossible for me to lose an ounce, I have been eating 90% vegetarian for 2 months and trying hard to be good.I'm not sleeping, I wake in the middle of the night like clockwork with palpitations and can't fall asleep. My eyes just open as if someone had thrown cold water on me. I sometimes see flashes out of the corner of my eye.

What could cause muscular swelling, numbness,muscle spasms, headaches, weight gain, memory and concentration problems, pain!, aching, and fatigue? Any ideas on what to look for are welcome. At the end of the month I go to see a specialist at the neurological, he deals in rare muscular diseases.

thanks,
Cats

[CCF Neuro[P] MD, RPS]

Dear Donna Dadlow:

Usually surgery for back pain is not of this type.  But most back surgeries are due to severe problems, yours must not be severe or highly localized.

Sincerely,

CCF Neuro MD

[Donna Dadlow]

I have had left leg pain for the past 10 years.  I am 43 years of age.  I know I have spondylolisthesis at L5 and am going to undergo surgery for this next month.  My question is: The doctor said he would shave part of the vertebra to relieve the nerve, however, there would be no fusion involved.  This would involve a one hour operation, 1 - 2 inch cut and I would be going home the same day.  Does this sound normal?

[CCF Neuro[P] MD, RPS]

Dear Joy Bauer:

These are distinct entities.  The meralgia parenthetica is an nerve entrappment syndrome caused usually by tight garments that compress the nerve.  The pain is usually in the hip/buttock area and has a classic distribution.  The syndrome called RSD is from an inappropriate response to a traumatic event such as sprained ankle or fracture.  The pain is not in alignment with trauma.

Depending on the degree of entrappment, the healing can be complete to irreversible.  Medications can help, such as neurontin.

Sincerely,

CCF Neuro MD

[Joy Bauer]

I have a quick question, and I am new and not sure where to post it.  I was diagnosed (today) as having something called Meralgia
Porcetheticia (I am guessing at the doctor's spelling as it is
rather illegible).  I haven't been able to find it in any medical
books that I have on hand, including the Merck's Manual.  It is
very similar to the symptoms of reflex sympathetic dystrophy and is in my leg.  I have reached a point where I can barely tolerate clothing even touching this area.  I understand that there is no cure and that I could possibly have it forever, but that there is a sympathetic nerve block that can be given every
few months (I believe the doctor said six months).  Can you help
me by telling me what the difference is between this and RSD?
I have been really suffering and would like to get back to having a full life again and the pain becomes very wearing and also causes (some days) a mild depression.  I am more comfortable standing than sitting down.  But, that gets pretty tiring, too.  I can walk, but not too terribly far.  Can anyone out there help me?  I know that the doctor is probably correct in his diagnosis, but I sure would like to know what I am up against long term.  Thanks so much!

[CCF Neuro[P] MD, RPS]

Dear Deanna:

I am afraid that once a nerve has been cut and there has not be the attempt to have the nerve heal, there is no recovery.  I will not get better, and usually not worse (numbness) immediately, but in the years ahead there might be numbness in the surrounding areas.  The muscle atrophy and weakness ,if occurred might get worse over a long period of time (decades).

Sincerely,

CCF Neuro MD

[Deanna]

I had a c'section 3 yrs. ago and my rt. leg has been numb ever sence - I have been told that a nerve was cut or damaged - what can be done to make this better?  If nothing can be done will this get worse the older I get?

[Janice Fowler [email protected]]

I am a 49 year old female who has been plagued with spinal problems since 1978. I have had three cervical surgeries and 1 thoraic laminectomy for supposively a tumor. I had begun to lose mobility and thought each surgery would assist in better range of motion. Much to my surprise this was not true. I am worse. I stay in pain all the time. Numbness radiates in my left leg from thigh down. That has become worse this year. When I had my last cervical surgey in 1994, I was told that things would not get worse. Right. The past 10 years I have gone from one cane to two, because of the muscle spasms, motorized scooter for work, and a portable wheelcair for distances. What a life! I stay depressed all the time, because I was a very active and independent individual. I get no answers that make since from the doctors as to why this has happened. The cervical surgeries were in the C-5-C-7 area and I think the thoraic was T-6. Medicines don't work, neither has therapy. I wish I could find some closure to my questions. Please offer any info or suggestions.

[Scoliosis]

Greetings to All,

Bravo!  Bad posture indeed wreaks havoc.  My mother, bless her heart (she passed away last year) was diagnosed at 12 (she was born in 1918) with curvature of the spine.  Unfortunately, the Depression prevented folks from purchasing medical supplies and contraptions such as corrective braces so the scoliosiss went untreated.  She grew up, went on to have 6 children and died in extreme crippling pain at the age of 79.  30 years of watching progressive osteoporosis taught me and my 3 sisters that proper diet, proper lifestyle and above all, proper posture would make our own lives (we all have curvature) the opposite of hers.  I feel sorry for anyone who suffers from lower back pain because pain there usually means "pain everywhere".  I hope you find some answers soon.  I'll be praying for you.

Take care.

[CCF Neuro[P] MD, RPS]

Thanks for the comment.

CCF Neuro MD

[Judy]

Catherine,

I have just read your postings and you have my sympathy. I thought I had written it as I have suffered from EXACTLY the same symptoms for 3 years. I had many tests and saw many specialists but just got worse. I then found a fantastic physiotherapy practice which has helped me considerably. It seems, though amazing, that all my problems are down to bad posture. I have not been back to the doctor since - I know I'm getting better. I don't need to take any drugs and I sleep 8 hours a night and spring out of bed in the morning! Its not quackery - its a perfect science and the most sense I've heard in 3 years. I've got my life back again.

Please give it a try - I KNOW it will help.

Take care

[CCF Neuro[P] MD, RPS]

Dear Catherine:

It is difficult to tell you the diagnosis.  It is good that most of the tests are normal.  It sounds like you have a lipoma on your spine, which we do see and it is just a finding.  These usually do not cause problems unless they are associated with a tethered cord (the MRI would have shown this).  The muscle weakness and fatigue may be due to your thyroid.  I would investigate this further.  In addition, I would get some general labs of blood count, B12 and folate level, sedimentation rate, etc.  This will help your physician pursue a logical etiology to your problem.  If these are normal then I would ask for an EMG.

Sincerely,

CCF Neuro MD

[chad]

The next time you go and have blood test run see if the will run a CPK... i've kinda have the same symptoms, and the only thing that they have tracked is my CPK's are climbing.
Maybe someday the answer will come.

[Catherine to Betty and all]

Hi, Why are you posting after my question, your story has nothing to do with mine. I am waiting to hear the opinion of the doctors on this forum. Please post on the main message board. Thanks, otherwise I will never see an answer posted.

Catherine

[Catherine]

Thanks CCF Neuro P (MD) for posting a reply. In answer to your questions, the first MRI (of back, spine) found a "growth" in my lower back - that they don't know what it is, but I don't need treatment for it. Apparently, it's some sort of growth between the fat layer and skin layer, some sort of cell growth. Makes me kinda nervous, but the Drs. say it's nothing to worry about. Also, the second MRI (of lower legs), was normal, except for swollen calve muscles. I also forgot to mention that I often fall over, have trouble if I move or turn around quickly, I kind of "list" to one side, like I'm on a boat. I have a hard time sleeping, sleep very badly in fact. At one point, I lost a lot ofo hair, had heart palpitations, and was sleeping Very Badly, but my doctor ignored my symptoms. I guess I was Hyperthyroid at that point, but didn't know it. Now, I am very tired all the time. What I want from all these investigations, is to know WHAT is wrong, and get some kind of effective treatment from the pain. I can't stand being in pain all the time. Walking around a museum for a few hours put me in such pain in my legs, and ankle, and hip joints, lower back, that my husband had to help me in and out of bed for days. I can't go anywhere or do anything. I used to be active, went skiing, skating, biking, but now I can't do anything. Went on my bike last summer and fell over in the middle of the street! Gave myself a good scare!

Haven't been tested *that I know of* for electrolytes, autonomic or genetics, but  I see my doctor at the Mtl General Pain clinic soon and will ask him. He has been very kind and has tried his best to be helpful, but they don't see you there permantently, and the gps (I have tried to find one)I have seen recently , treat me like I'm too much trouble, they don't want to get involved, even just to be the one renewing my prescriptions. I'll post some of my test results tomorrow.

thanks,
catherine

[BETTY SMITH.]

I HAD A MAGOR STROKE IN DECEMBER OF 98,    I HAVE ASEVEIR BACK PROBLEM, AND I HAVE VERY BAD PAIN EXPECHELY AT NIGHT, I AM TAKING PURECET , BUT BECAUSE OF SIDE EFFECTS I ONLEY TAKE I HALF OF THE PILL MAYBE EVERY 6 HOURS AND DEPENDS ON THE PAIN MAYBE NOT THAT OFTON, I WOULD LIKE TO KNOW IF PERUCET IS SAFE TO TAKE AFTER A STROKE , AND WHAT THE EFFECTS COULD BE., THANK YOU BETTY JUSTICE SMITH,

[CCF Neuro[P] MD, RPS]

Dear Linda:

I would call your neurologist.  What you need to rule out is a small lacunar stroke.

Sincerely,

CCF Neuro MD

[Linda]

Hi, I am a 49 year old woman with high blood pressure. I am writing because yesterday I developed a annoying numbness that is
on the right side of my head right behind the right ear. It goes all the way up to my right temple. It has also traveled down to my right shoulder has of today. I have no idea what is causing this. I hooe you can help.
Thank you for your time.

[CCF Neuro[P] MD, RPS]

Dear Catherine:

It sounds like you have had quite the work up.  What did the EMG find?  Is there a family history?  What did your electrolytes do when they exercised you?  Automonic testing reveal anything?  What about metabolic work-up, any lactic acid, unusual organic acids, amino acid products?  Any genetic testing for channel abnormalities?  I am not sure what I can add.  Your symptoms are wide and seem to exercise induced.  What did the muscle biopsy show?  Let us know what the muscle expert has to say.  I wish I were smart enough to help.

Sincerely,

CCF Neuro MD