Numbness in legs getting worse

[Guest Julia59]

Hi Folks,

I send my apologies in advance for this vent of sorts.

For a while now I have noticed the numbness in my legs and the back of my arms has been increasing------but now I notice it is starting to slow me down more then my usual.

I will be going to the Cleveland Clinic next Friday to the SPINE CENTER. I went round and round with the nurses on the phone to make sure I was being sent to the right place. I thought neurology would be more logical.

I have issues in both my cervical spine and lower brain---so I don't know if the spine center will be the right choice as it is also a rehab bldg. The nurses consulted with a neurologist there at the Cleveland Clinic---an older Doc---old school of course---and he told them "THE SPINE CENTER".

Well that's where i'll start I guess. I found that my insurance covers Dr. Venesy---the spine center at 90%, but other parts of the CC are only covered 75%. Very dissapointing as I have been fortunate with Dr. Heffez and Dr. Bolognese---and my Surgery at Rush----all preferred providers in my insurance plan.

I guess we'll have to roll with it---as I know others have it a lot worse----I should count my blessings while I have them.--------

One of the nurses has been following my care from CC---and she was nice enough to call me and explain why the Neuro Doc wanted me to start with the Spine Center. She told me that he said I would get in much quicker to the spine center then with neurology, and Dr. Venesy would just refer me there anyway. He said I would get into neurology much quicker that way---then trying to do it on my won. It sounds like he did take the whole thing seriously---and that he just knows the hoops that need to be jumped---that's all.

Well----last night I got a call from my husband's brother. It was his birthday---and he wanted to stop by. I told him to hold on for a 1/2 hour so I could run to the store before he got there. I wanted to get some lottery tickets to put in his birthday card. I also picked up some Whipped topping for topping the ice cream. I made him a special bowel of Ice cream---------- WEll he is the birthday boy----who said 52 is too old for a little fun. My hubby joined us after he got out of school.

Meanwhile in the store I had big problems----scarey ones............

I rushed a little so I could be back in time to place the lottery tickets into the B-day card. I felt like I was trying to walk in deep sand. Then when I popped into Kroger's I was stunned-----I just plain had trouble walking---it still felt like I was trying to walk in deep sand or mud.

Then my legs felt so weak. I saw a lady that we talk to all the time who works in the Deli---we just love her and her friend. She was standing in line at the check out---and I was just realizing my leg problem. I tried to talk to her but my words were all mixed up. I felt like a school kid trying to make excuses as to why I had to hurry. I only had to pick up cool whip---and a bottle of water. I didn't think I was going to make it. My face started getting numb---and it's been that way since. Actually that has been happening on and off, but it's just more often now.

I'm still in denial that this is real. I don't think POTS would cause this---so i'm pretty sure Dr. Heffez is correct in his diagnosis of myelopathy. My spinal cord really has a problem, but the back of my head hurts too, and he was sure I will probably need surgery on that also, as there is a good deal of brain stem compression from both the hypoplastic posterior fossa and the vertebral artery compression. The pain in my head feels like right after you get hit in the face----that kind of stuper you get with that. The low base humming noises are getting worse in my ears, and my vision is getting blurry---and i'm seeing more of the black dots floating. Typing this is hard, my hand coordination is starting to be affected-------the list just goes on..................

I guess i'm sort of venting a bit---but I also feel a little confused due to the neglect from the medical community locally in my town. They just blow me off. Dr. Grubb takes all this seriously and feels for me---but he can't do much more then that---this is not his area. My local doctor just sits and listens---and doesn't really tell me anything. To be fair to her---I can't say yet if she is dismissive. From what I understand she is a good Doc, but she is too new to me to tell. I have only been to her once. My other doc wasn't a provider in my insurance so I switched to her because she is.

This is getting long so i'll wrap it up. I'm mostly concerned with ending up without the function of my legs---and hope that this can be fixed. I also fear MS--------I saw what my best friend went through. Dr. Heffez said my symptoms are very simular to MS---as myelopathy is a big part of MS---but then he was quick to say I didn't have it. He was sure my spinal cord was now suffering damage due to long standing compression from the congenital stenosis. I think surgery will only stop the progression-----I don't think anything can be reversed.

I wonder if something else like MS is going on---or my spinal issues are really that bad. --------------------------------------

I'm usually a little more hopeful-but last night kind of dwindled that........

Julie :0)

[corina]

Hi Julie,

i'm sorry that i wasn't able to read everything, but i wanted to let you know that i do hope the spine center can help you solve your problem. i don't know much about numbness in legs, but i do have weakness in my legs. i'm sending you my best wishes,

corina

[Ernie]

Hi Julia,

I really hope that you will have the answers you need next week.

Good luck with your appointment.

[Poohbear]

Julie,

It's hard to say what's going on because POTS does cause a lot of these symptoms. I'm sorry you are feeling so cruddy and hope you get some answers soon.

Have you had a spinal tap? That might help rule in or out the MS.

Take good care of yourself!

[melly4]

I wish I had something to offer in the way of advice or experience, but I really don't. I suffered a c-spine injury this summer and have occasional pains and stiffness in my neck, but I haven't experienced the numbness in my legs, only the weakness that Corina and you are talking about. I have the numbness on one side of the face and the blurred vision and spots, but I've always assumed they were auras, because I usually get a migraine right after.

Good luck with your appt., and I hope your dr. gets to the root of your problem and how to care for it.

Melly

[Dizzy Dame]

Julia,

Sorry to respond late to your post. What you're going through sounds awful. It must be really scary. I don't have spine problems, so I don't have much to offer in the way of advice, but I just wanted to say that I'm thinking of you, and that I hope you get some answers at the spine center.

Good luck, and keep your chin up

- Lauren

[lizzy]

Julia,

just wanted to reply to send my prayer are with you . I went throuth alot of your siptims last summer,my doc figgerded it out to just a reaction too much topamax for my crazy body to handle.SO hope YOU get anserse and they are not bad ones that you can not handle. YOU TAKE CARE .HOPE THING GET BETTER.

lizzy,

[briarrose]

Julie

I'm definitely no expert but the symptoms your describing don't sound as much like POTS as they do spinal nerve. Is there a professional you can call for advice before your appointment?

Your cognative difficulties are probably POTS but then again your case is so different, I'm obviously guessing. I know I suffer many cognative difficulties and have yet to get a doctor that will listen to me and take me seriously. I've found over the past couple of years that my co-workers and doctor's have something in common - "You look so good, how can you be so ill" So again I'm not really heard other than Dr. Grubb, thank God for him.

Let us know how you're progressing and if there is anything we can do for you.

[Guest Julia59]

I'm OK----plugging along. Thanks for the support & prayers---you all mean a lot to me.

I was just so stunned the other night when my legs acted up. They are still screwed up, but I can still function. Thursday night was really bad----but so far i'm stable other then that night. Just the usual numbness fluctuating from moderate to severe. The more I exert---the more problems I have.

My neck hurts a lot more---and I assume this must all be related to the spinal issues, but it is hard to tell if the fatigue is from POTS of the compression on my spinal cord. The cognitive function could be both---the POTS and the brain stem crowding.

I bought ankle weights and I do leg lifts while laying down to help strengthen my legs. However, after doing the leg lifts---the numbness worsens and my legs get shakey. Any muscle that I exert----get's shakey afterwards.

Melly, be careful to look out for any problems with your neck. If you take care of it earlier---non-invasively---your less likely to have problems later. The Docs didn't take me seriously when I crashed my head into a windshield in a car accident in 1977 when I was 18 years old. In the late 80s the Doctor my Mom worked for did a plain open mouth x-ray and saw that I had a compressed fracture that had healed. He said I would most likely have problems down the road. Boy was he right! My vertebrae were all impacted when the top of my head hit the windshield. Some guy in a BIG Ford LTD turned in front of us---we had a little Pinto----------(don't laugh---It was a cute little green car--NOT---LOL---

Dr. Heffez said it was tragic that my neck issues weren't handled properly. Combine with the congenital abnormalities-----the accident probably put me over the edge. EDS doesn't help.........................

Thanks again for taking the time to read my way too long post---------

Hugs to all of you-------

Julie :0)

[pamela]

My prayers are with you during this phase of your illness and I hope things perk up for you. I have realized that My docs and I are in the barely phase one of my diagnosis and treatment. They diagnosed the POTS and Hypotension but since I tend to run really low in the pottasium level that may effec/aggrivate my symptoms. The military sent a reccomendation for me to see a neurologist 11 months ago because I complained of periodic bumbness in my arms and legs and passinfg out. To make a long story short that appt. never came and I ended up passing out in my hemotologists office and entered CCu in Charlotte NC. They diagnosed me but did not start any workups to find out what was going on. I started on Nadolol but my bp stayed below 88/55 but my heart rate was less spastic. They changed me to Metadate (rittalin type drug) and now my BP is up too much and my heart is constantly Tachy and PVC's all over the place. I currently have to go back for another echo, I just did a coratid artery ultrasound that has to be reviewed due to some left side numbers that were less than the right side.

Any way I know I am new at this and I sympathize with you. THe whole confusion,speech difficulties and typing correctly *****. I would like any advice you can give. I cannot continue the metadate because of the chest pain and irratic heart rate so we are going to try something new or go back to a beta blocker. The doc is doing the best he can and being patient but I know I am driving him up the wall.

Again good luck and God bless! PAm