Seeking advice

[EvaKay]

Ok so here's my story.....I'm 34,female, have asthma, previously treated for anxiety and depression later determined to be PTSD, previous history of migraine as a teenager, have fibroids and gallstones NO PREVIOUS neurological issues..... about 3 months ago I started getting tingling sensation an numbness in my right hand and arm . It would last a few minutes and then go away. Then about 2 weeks ago, I was out on a dinner date and my right hand and arm went "to sleep ". It was a very odd sensation and it lasted for about 45 minutes before I finally had feeling back in it. Not normal feeling, it's still not normal,but not totally asleep. It gets burning shooting pains on the outside of my arm that runs down and wraps around my hand. My dexterity is impaired, as is my coordination. I'm also now getting pins and needles in my right leg. I also now have the same numb/burning pain in the right side of my face running from in front of my ear to my upper lip now. Last night I noticed when I take a hot shower I become fatigued and all my symptoms amplify.
I went to the ER the night my right hand and arm went to sleep. I feared stroke or something of that nature as my ex-husband had a stroke that began with arm pain.
ER doctor did chest X-ray,EKG,CT, labs of all sorts
My blood pressure was elevated but I was in near panic mode when they checked it.
Sent home with tentative diagnosis of possible cervical radiculopathy,possible carpal tunnel, and possible migraine. Given prednisone 20mg for 5 days and hydrocodone.
ER doctor stressed that I need to see a neurologist to evaluate for Ms. I have a half sister and had an aunt who both have/had Ms.
Follow up with PCP and she ordered more labs and cervical spine x-rays. She doesn't seem worried about referring me, basically ignored my mention of a referral.
She prescribedtaper: prednisone 10mg 10 day taper, more hydrocodone, and gabapentin 300mg 3Xdaily for nerve pain.
Haven't gotten radiology report yet on cervical x-rays.
Sincerely doubt it's my neck. I have Zero neck pain.
And today my left hand is falling asleep and tingling. I am terrified! My question, does this sound consistent with Ms symptoms or with radiculopathy?Am I wrong to be considering changing PCPs in hopes of getting a neurology referral? My insurance won't pay for neurology referral from the ER.
Any suggestions or advice is greatly appreciated!

[lyndacarol]

Follow up with PCP and she ordered more labs ...

Any suggestions or advice is greatly appreciated!

Welcome to ThisIsMS, EvaKay.

Your symptoms are consistent with MANY conditions. A diagnosis of MS is a diagnosis of exclusion, made only after other more likely causes for your symptoms have been ruled out.

In all of the lab work that has been done for you, I wonder if your vitamin D level has been measured. (This is done with the 25-hydroxy D test.) A vitamin D deficiency can manifest with neurological symptoms. Please request your own copy of any test results – it is important to have the actual test result numbers.

If you have not had a vitamin D test, ask your PCP to order it. The cost is moderate, if you must pay for it yourself.

[EvaKay]

Hi,Lyndacarol. My vitamin d level on the 25 hydroxy D test was shown as 37ng/mL with a range of 20-50ng/mL being considered normal. My B12 level is also normal. I'd have to look at the report but my B12 was in the neighborhood of 625-650. I feel like a pin cushion from all the lab work. My TSH was 1.625. My fasting blood sugar was 73. No signs of an infection.
I'm still waiting on a radiology report of the cervical spine x-rays they did.
I've noticed that when I tilt my head and look down,I get the same burn/tingle/shock sensation that I have in my arm only it starts in my back and runs down my arms.
I'm terrified. This stuff is affecting my daily activities.
I'm normally not clumsy but the last few weeks I drop things routinely. I managed to burn my right wrist and arm cooking dinner because I couldn't make my hand stay steady.
I had the a/c on all weekend set at 65degrees. At higher temperatures my problems get worse. I'm also constantly fatigued. Just totally worn out from simple daily activities. I'm not sleepy,just exhausted. After I take the prednisone I get a rush of energy but it doesn't last.
I know within me that something is horribly wrong. I just need to know what. Knowing what it is would make dealing with this so much easier.
Family,friends,coworkers all ask what's wrong with me and I have no real answer to give . That in turn leads to the questions of is it depression or maybe you're just not getting enough sleep. I'm so tired already of having to explain that my doctor hasn't figured out what I have.
I didn't leap to thinking Ms is a possibility. The doctor I saw in the ER stressed that I need to see a neurologist to evaluate for Ms. He didn't elaborate as to why that was his recommendation.
I guess I just have to hang on and wait until they've tested for every thing under the sun but it's so frustrating. Thanks for listening err reading.

[lyndacarol]

My vitamin d level on the 25 hydroxy D test was shown as 37ng/mL with a range of 20-50ng/mL being considered normal. My B12 level is also normal. I'd have to look at the report but my B12 was in the neighborhood of 625-650. I feel like a pin cushion from all the lab work. My TSH was 1.625. My fasting blood sugar was 73. No signs of an infection.
I'm still waiting on a radiology report of the cervical spine x-rays they did.
I've noticed that when I tilt my head and look down,I get the same burn/tingle/shock sensation that I have in my arm only it starts in my back and runs down my arms.
I'm terrified. This stuff is affecting my daily activities.
I'm normally not clumsy but the last few weeks I drop things routinely. I managed to burn my right wrist and arm cooking dinner because I couldn't make my hand stay steady.
I had the a/c on all weekend set at 65degrees. At higher temperatures my problems get worse. I'm also constantly fatigued. Just totally worn out from simple daily activities. I'm not sleepy,just exhausted. After I take the prednisone I get a rush of energy but it doesn't last.
I know within me that something is horribly wrong. I just need to know what. Knowing what it is would make dealing with this so much easier.
Family,friends,coworkers all ask what's wrong with me and I have no real answer to give . That in turn leads to the questions of is it depression or maybe you're just not getting enough sleep. I'm so tired already of having to explain that my doctor hasn't figured out what I have.
I didn't leap to thinking Ms is a possibility. The doctor I saw in the ER stressed that I need to see a neurologist to evaluate for Ms. He didn't elaborate as to why that was his recommendation.
I guess I just have to hang on and wait until they've tested for every thing under the sun but it's so frustrating. Thanks for listening err reading.

According to GrassrootsHealth, your vitamin D level (at 37 ng/mL) is below the "40-60 ng/mL to Prevent Majority of Diseases" (http://www.grassrootshealth.net/media/d ... -24-12.pdf)

I encourage you to read through the material found at www.grassrootshealth.net

(By the way, each lab establishes their own reference ranges for tests. Your lab considers 20-50 ng/mL to be "normal" – but you want to reach the optimal level for YOU, which may be much higher than 50.)

The head-lowering with tingling sensation is called l'Hermitte's sign – this symptom is found with several conditions (NOT only MS).

You know your body best: if YOU think something is wrong, it probably is. I feel confident that you will find the answer.

[EvaKay]

This is a long drawn out battle! I'm now scheduled for an EMG on the 15th. I'm on 600mg gabapentin and hydrocodone for pain. The c-spine showed moderate degeneration of C-4C-5and C-6 with several bone spurs. My PCP isn't satisfied that this is the only issue I have going on though. Along with the electrical sensation when I tilt my head forward, she discovered at my last appointment that I fall on my rear trying to stand with my feet together and eyes closed. I am also exhausted and have urge incontinence. Yay me!<sarcasm > I feel like my world has started falling apart in the last month! Things I used to do with ease are now a battle. I've forgotten what joy is. It takes too much energy just to manage to do my job and keep up my home. I'm struggling to keep on keeping on. Is it that way for everyone?
Still no clear diagnosis. The only thing found is premature ventricular depolarization and c-spine degenerations already mentioned.

[Scott1]

Hi,

Have I got this right? You have not seen a neurologist? You are taking the majority of your advice from an ER doctor?

I think you need to see a neurologist.

Regards,

[EvaKay]

Hi,Scott.
I am waiting to see a neurologist. I am taking advice from my primary care physician. The initial onset of symptoms sent me to the ER.The ER doctor was the one who first said that I needed a referral to a neurologist to be evaluated for MS. That was the neurology consult they called in that night not just an Er doctor.
In my area neurology appointments and referral take a while.
My primary care physician has ordered an EMG and an MRI. She said I may as well get them done while I'm waiting on the neurology appointment. She has consulted with the neurologist that she's referred me to but I haven't seen him yet.
It took until last week to convince her to referr me and it'll be May before I will see the neurologist.
I live in a very rural area and things are usually handled by primary care with consults from specialists as needed.

[Scott1]

Hi,

Based on something you said, I think you should see a neurologist. I'm sure they can speed it up a little.

I don't know if you have MS but I think that is the only person you should heed for a diagnosis.

Regards

[EvaKay]

Thanks, Scott. I have a neurology appointment on May 5. Thats the soonest appointment I could get. My primary care is forwarding results of every test and all imaging to the neurologist she referred me to and is in communication with him. Maybe they'll get me in sooner after they have EMG results and MRI. I can hope at least.
Mind if I ask which symptom made you say I should see a neurologist?
Merely curious. From my perspective they all warrant investigation. It's been one heck of a month. I'm holding down a full time job but it's a serious struggle lately.

[EvaKay]

A bit of an update:
According to my primary care, she is now leaning toward MS as a very likely possibility.

The EMG report by a second neuro stated that the neurologist reading the EMG felt that I likely have 2 issues. Cervical radiculopathy and "demyelination".

I have an MRI tomorrow. Part of me hopes it's clear. Part of me just wants to know for sure.

Brain fog is a real pain! I lose words on a regular basis now. I also have more balance issues and foot drop. My vision isn't as sharp either. Especially in my right eye.

For now, I'm on gabapentin,norco,and amitryptiline. Tried to get my pcp to give me more prednisone but she says not now.

She also assured me that my vitamin levels are nowhere near deficiency. I've been taking D3 and B12 and she re-tested at my insistence.

[Scott1]

Hi,

At least you are moving towards a diagnosis. The Gabapentin can alter your mood and make you a bit depressed. That might be why you have Amitryptiline. Thank goodness I'm not a doctor because I wouldn't have done it that way. Baclofen works on the same target as Gabapentin but is more likely to make you a bit sleepy rather than depressed. From experience the recommended dose is too high. 5-10mg before bed seems to make a difference to me. The Norco is hydrocodone bitartrate, a sort of super codeine that is like an opiate to help you manage pain. The obvious question is do you really have pain?
Your doctor is right to hold back on the prednisone. You can't stay on it without a lot of very negative effects developing.
The first page of this link might help, particularly for brain fog - http://www.thisisms.com/forum/regimens- ... 24019.html

Regards,

[EvaKay]

Thanks,Scott. I'll check out that link.

As far as pain, yes I have pain. I've got a horrid burning that runs down my right arm. Rather like a hot iron rod being rammed down it.

The amitryptiline is supposed to help me sleep through the night.
Primary care seems to think that will help with fatigue.
She prescribed it because pain wakes me up if I don't take the norco before bed. Thus far the side effects of the amitryptiline outweigh the benefit in my opinion!

Gabapentin works for the nerve pain,tingling,pins and needles.
I can't take something that makes me drowsy during the day. I work full time and commute 100 miles a day round trip and have to be alert. So far gabapentin is a godsend! She mentioned baclofen but said it can make you very drowsy.

I got a call yesterday about MRI results,from pcp's nurse. Will be discussed in depth at my next appointment.

3 lesions on my cervical spine "characteristic of demyelinating disease " and 2 herniated discs at C4-C5 and C5-C6.
She didn't elaborate on brain portion, simply said that will be discussed at my next appointment.

So I am preparing myself for a possible diagnosis the 27th. If there are lesions on my brain as well as spine and with the emg results, is that enough for a diagnosis?

I truly hoped it was not ms but had a gut feeling.
My symptoms mirror so many of my sister's.
I firmly believe that we each know our own body better than any doctor.

[Scott1]

Hi,

We are all different. I wouldn't worry about the herniated discs. They are unbelievably common. Lots of people also have twisted spines and get by without ever noticing a problem. Demylination of the cervical spine is common in MS and that's the only relevant thing that pertains to an MS diagnosis. The other thing are common in the general population .
I've had all the altered sensations you are talking about but I don't have issues with depression or anxiety. Feelings are real so don't ignore them. My own preference is to face them not mask them but, as I said, we are all different.
If you can overcome the drowsiness it will make a big difference. I use Q10 and aceytl-l-carnitine for that. Happy to run through how I would do that if you are interested. I would also use an antiviral (valacyclovir) as I have done for over 10 years but there is a divided opinion on that and you need your doctor to buy into that. I also found that helps with fatigue and brain fog. Happy to explain why and how beyond my notes if you think it helps.
Regards,

[oddity]

Hi EvaKay,

I am going through some similar issues as you. Kindof in limboland. My biggest problem right now is a weird burning pain in both my legs and a deep cold painful sensation in my calves. The MS specialist wanted to prescribe me Gabapentin. I wanted to stay away from it and said no. She then prescribed me Cymbalta which I have been afraid to take. Based on what you said that Gabapentin has been a Godsend, I am starting to reconsider. I'm curious what dosage you are on? Thank you and I wish you the best of luck during these trying times.

[EvaKay]

Hi Oddity,
I am taking 600mg every 8 hours. I started out on 300mg every 8hours for a month. It seemed to wear off before I was due for another dose so it was increased.
The only side effect I have noticed was initially maybe a little increased drowsy / foggy thinking but that passed quickly as I got used to the medication .

Re: cymbalta. I tried it years ago for a bout of depression (later identified as PTSD) I had horrible side effects.

Thank you and I wish you the best as well. Its horrible being in limbo! I'm hoping for a diagnosis soon and hope the same for you!