No dx, in a lot of pain, frusterated with my PCP

[JenLee]

I am posting here because I am extremely frustrated with my PCP and in an extreme amount of pain. My family is really tired of hearing about it (not that I blame them). I need a forum where I can communicate without causing my family any additional concern. So here I am. I do not have a dx of MS at this time.

My symptoms:

8 yrs of worsening memory problems and loss of sex drive/response (did not seek treatment, thought might be a side effect of antidepressants)
2 yrs ago - 6 episodes of back-to-chest pain. Each episode lasted 8 to 12 hrs. MS Hug??
1 yrs ago - 12 to 18 episodes of the same back-to-chest pain. Each episode lasted 8 to 12 hrs.
August 2014 - current: (in order of appearance)
* extreme itchiness in arms, hands, face, scalp, chest
* numbness (hands)
* pins & needles in arms, hands, face, scalp, chest, feet
* muscle rigidity in calves, aches in ankle joints
* 4 episodes of extreme vertigo lasting anywhere from 2 hours to 4 days
* hypersensitivity (to touch) in face (and later in arms)
* many different kinds of pain in hands, wrists, arms, shoulders, neck, back, chest (breast area) - electric shock, stabbing, burning, bruised

In November I became increasingly concerned. I googled my symptoms (without listing memory or sexual dysfunction) and the results where filled with references to MS. My father has MS, but it never occurred to me that my symptoms could be MS. (My father's symptoms are completely different.)

In early December, I finally saw my PCP. I gave him a 5 page write-up of the history of my symptoms and family medical history. I mentioned I was worried about MS. He ordered blood & urine tests and an Xray. Based on the X-ray results he thought I had osteoarthritis. I asked about MS. He gave me a 30 second eye exam, and said he had ruled out MS because I had no vision problems and at 45 I was "too old to be diagnosed with MS". He ordered an MRI.

Based on the MRI, I was sent to an Orthopedic Surgeon. This Dr. spent all of 30 seconds reviewing my MRI and concluded: (1) I have a slight bulging disk which in no way accounts for my symptoms and (2) symptoms in the face & scalp could NOT be explained by problems in my spine since the nerves that run to the face & scalp do not run go through the spine. Therefore, problem is likely neurological and given my family medical history, I should be evaluated by a neurologist for MS.

Why didn't my PCP (who is actually only a Physician's Assistant, no MD), figure out that the face & scalp issues could not be explained by a pinched nerve in my spine? Why did we waste time (3 1/2 months) exploring the osteoarthritis (aka "pinched nerve") hypothesis? Why do I have a sinking sensation that my PCP basically ignored the symptoms that did not agree with his favorite hypothesis?

I'm probably not being fair to my PCP. I'm just frustrated and very overwhelmed by the pain which is 3x as bad now as it was in early December when I first met with my PCP. I was on Gabapentin for a couple weeks but had a very, very bad reaction and had to stop taking it. My PCP is so concerned about possible reactions to other pain killers that he will not prescribe anything for the pain other than an anti-inflammatory which is doing ZERO to help.

Thank you for listening. I just had to vent to someone. It's either that or give in to the pain-induced anxiety which is threatening to overwhelm me today.

[KitOP]

I can only imagine how frustrated you are at this point. Getting that dx can unfortunately be a long drawn out affair.

There are many tests that will probably be done. They have to rule out other diseases that have similar symptoms as MS. Another MRI would be done of the brain, with and without contrast. I doubt that a PA would have the knowledge or the foresight to do this kind of testing.

I would suggest trying to get to see a neurologist that specializes in MS. You may need a referral from your PCP to do this, but ask.

And no, you are not too old to be diagnosed. I was 44 and I know of others who have been much older than that.

Please be persistent, you are your own best advocate and deserve to have the answers.
Good luck, and feel free to stick around here. You are not alone and have a lot of support here.

[JenLee]

tyvm

Thank you, KitOP, for your response.

The one MRI I've had was of the spine to confirm my PCP's initial diagnosis of osteoarthritis. That MRI was eventually reviewed by the orthopedic surgeon I was sent to. His recommendation back to my PCP is that I be referred to a neurologist for cranial imaging and that one of the things they should look for is MS.

I'm currently waiting for my PCP to review this recommendation. Under my insurance, I cannot see a neurologist without approval from my PCP.

My pain is 24x7 and has steadily worsened since Aug 2014. I'm trying to be realistic about the timeline for any diagnosis of any medical condition. However, the constant mind-numbing pain is getting to me. I do not know how I am going to grit-my-teeth-and-bear-it indefinitely.

[poohb3ar]

boy, i can relate to all those symptoms (sxs)

it's not unusual to go yrs without a diagnosis (dx), so if you subtract the years they've been ignoring your sxs, then you're definitely not too old! plus i've never heard of anyone being told they were too old for MS.
now MS makes you feel old!

there's no shame in taking pain relievers. i'd have gone crazier without them. i take tramadol (pain killer) 3 to 4 times a day- without it i couldn't walk and my legs hurt unbearably bad!

actually went on a trip without them. took 3.5 days to get some. by then i was in the fetal position in bed, i was in so much pain. (the pins & needles, etc.)

kitop was absolutely correct about all the tests. if you get a neuro who only looks at your MRI & does a quick exam, then declares it's all in your head or something of that sort- get a second opinion!
it happens a lot. i've heard several here agree. not all neuros are the same, neither are MRI machines, techniques, how they read them, etc.
if you're not satisified with the answers you get, keep trying

you are the only one who knows best how your body feels. so be your own ambassador.

keep us updated!

take care & God bless ya!

[JenLee]

to poohb3r

ty for your post. I have found a neurologist in town who specializes in MS and takes my insurance. My fingers are crossed that my PCP will approve a referral to him. Since this Dr specializes in MS I'm hoping he will be more thorough & diligent in coming to a diagnosis than someone who is less familiar with the disease.

[JerryD]

jenLee,
You are fortunate to find a neurologist that has experience treating MS, nearby. I hope that your PCP doesn't drag his/her feet and refers your case to that neurologist. Don't be surprised if you go through several tests. And it will be a pain in the butt, but it's worth every minute.

[22cyclist]

GenLee: start making lists of when you first noticed any numbness or tingling anywhere,how long it lasted ( neuros don't count anything less than 24 hours.) then do the same for your pain. They need a record of what comes and goes, and what is there all of the time. There is some evidence of MS being hereditary but they don't have an exact number. I would certainly tell the MS Specialist that first thing.

Take care and I hope it is something else entirely curable!

Keep us posted,OK?

[JenLee]

22cyclist: ty for the advice.

Since December (when the pain moved into my neck and back and I became concerned enough to see a Dr) I have recreated a chronology of sxs (back to Aug 2014) and have kept a journal ever since which I update anytime there is a change.

My symptoms are chronic. Meaning that they are 24x7 since August 2014, with new areas impacted and new / worsening pain, etc. All sxs that started as intermittent have within about 2 weeks become constant. There has been no reversal, although the severity of the symptoms varies a little from day to day. (Its an "8" day as opposed to a "10" day...that kind of thing.) Once a new pain (type, location) shows up...it seems to be there to stay. At least this has been the case for the last 7 months.

[Phoenix822]

Be good to your PA. Generally I find them to be more helpful than MDs.

As as to your symptoms, I'd say: don't give up. Trust yourself to know your body best, and to know when something isn't right. Then keep hounding doctors' offices until someone takes you seriously. (Says the woman who did the exact opposite of this for 20 years)

[Phoenix822]

plus i've never heard of anyone being told they were too old for MS

I HAVE!!!!! I was told that by my pcp at the ripe old age of 22. (No, really)
Then later I was told by another that if I had MS, I'd have been diagnosed before 30. My grandmother was sent to a shrink for 2 years before she was diagnosed, and she was younger then than I am now.

Thankfully, medical understanding of MS has come a long way since then. But it still has a ways to go!