Pins & Needles - I still don't get it

[Deludel]

Recap: dx 1.5 yrs ago after Optic Neuritis, non-specific lesions on brain, a few lesions on T-Spine.

I'm so tired of this conversation when I call my MS Neuro office (I speak to the APRN, or even when I go in and sometimes talk to the doc)

Me: I have XYZ symptoms
Them: It doesn't sound like a new lesion. A new attack would be on one side of your body only (or, would last all day, or .. would be .. would be .. etc) ... you should call your primary doctor.

I never call my primary, because that doc just looks at me and says, "you have MS, call your MS doc"

So anyway, my pins & needles have increased over the past month or so. Mostly in my feet - they'll feel numb after being in the same position too long, and will take 20min or so to get back to normal. Or, I will just have a numb feeling when I get up to walk after being in a chair too long. Also though, I will get sensations in my legs, feet, hands like someone has a voodoo doll, and is just having a blast with a needle and just pricking me. Damn annoying, not debilitating.

Called the MS Neuro this week and they of course said .. doesn't sound like MS because it's not in one spot, it's not consistent througout the day, etc etc etc.

Grrr. Part of me says who cares ;... not like there's anything I can do about it anyway. I'm just tired of sitting here, wondering who I pissed off, and how to get that voodoo doll away from them.

And on a more serious note ... do I just listen to the damn doc as a hidden message not to make a big deal about it, or go see someone else, or .. ? I really like this MS office, it's a very respected MS clinic at Yale in CT. Yet I don't know if my frustrations are with them ... or, with the general unknown of all of this.

[Deludel]

I guess, when it comes down to it, by ultimate goal is still this: determining *is it MS?* .... some of it still has to do with accepting, another has to do with learning, and the last part has to do with understanding that not everything IS the MS .. and if it is not, making sure nothing else has to be addressed.

[kwarendorf]

Hi D -

I think that your goal should determine your choices. If I read this right you have been diagnosed. If so, are you trying to determine whether or not your having a relapse?

I understand the frustration with answers that include the words generally, typically, usually etc. If these words are included in answers it means that waht ever symptom is being discussed cannot be ruled out, as relates to MS. My first relapse was characterized by bilateral numbness in my feet aand legs. The minute you  mention bilateral out come usually, generally and typically :-)

From what you describe it doesn't sound like you're having a relapse. You may be dealing with the reality that we don't always fully recover from relapses.  Generally (just kidding!) Many of us have symptoms that are with us in varing degrees all day, everyday. I have tinnitus, urinary hesitancy, morning double vision and neuropathic foot pain. None of these are debilitating, but they are a serious nuisance :-)

Some of these permanent symptoms can be addressed proactively. I take meds for my foot pain and bladder issues. Others, like tinnitus and morning double vision, have just become oart of my daily life. There really isn't anything that can be done for them.

As to your doc, only you can decide if the annoyance oughtweighs benefit. That he is attached to a prestigious teaching hospital is great. But the relationship between us and our MS docs is like a marriage. It's likely to be a very long one and you need to be comfortable.

Kyle

[Deludel]

My doc is an MS neuro at the Yale Center for Multiple Sclerosis & Immunology .. here on the East Coast, that's good credentials.

So here's a question for those of you with experience with pins/needles .. have you experienced where they come/go throughout the day? Where you sit for a long period of time, then stand up and your feet are numb or tingly but after 20 minutes or so they get better?

Does this "voodoo doll" description ring a bell? For instance, I am sitting in bed, have been sitting here for 30min or so, and I feel like someone is pricking my vooodoo doll in the arms and legs right now.

[HVAC]

Is neurologist you are seeing a MS Specialist? If not I would get an appointment with a MS Specialist. It can sometimes take awhile to see a MS Specialist but that is a good sign. It means he has a lot of patients.I had one neurologist I was getting no where with, luckily she fired me. I then went to a MS Specialist. Some doctors and patients do not fit. I found the same with oncologists. It took me 4 neurologists and 3 oncologist. Now I just see a NP at my neurologist.

There frankly is not a lot that any doctor can do about those symptoms that is why you are passed back and forth. Unfortunately GPs do not have a lot of say when it comes to MS. Many neurologists will not pay attention to what a GP says. Sometimes they will not take the word of another neurologist.

If you switch doctors understand they all know each other so be careful what you say. Also lie and say you are getting your notes for your own records, if you need records for a new doctor. All the MS Specialists in our area have lunch together on a regular basis.

Alex