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Cant see neurologist for two months?

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Posted 5/10/2017 6:30 PM (GMT 0)
So Im suspecting I have MS. Three months ago I went to the ER with numbness and tingling thinking it was a stroke, was sent home and it went away a week later. I was fine up until last week when my whole body started twitching, have numbness and tingling everywhere, left arm muscles are tight, weak, and Ive lost fine motor control in that arm. I asked my primary care doctor for an MRI but apparently thats the last diagnostic test that would be done after everything else and told me the neurologist will run all these tests. I called neuros in the area and the closest appointments are in JULY!!! My symptoms have progressed so quickly in the past week, I cant imagine what itll be like two months fown the road. I ended up going to the hospital that night thinking theyd run an MRI But apparently in the ER, they do CAT scans and the ER doctor suspected MS and said that for MS, MRIS are best for them. So again, told me to schedule with a neurologist. My question is, isnt a primary doctor able to give me a referral for an MRI in the mean time up until I can see a neurologist? Shouldnt the lets say "abnormal" MRI be the reason my doctor refers me to the neuro? Do you guys think I should go for a different GP in the mean time so that maybe I can get on steroids in the mean time if it is MS to prevent damage? I think its ridiculous to have to wait two months when serious issues are going on.
Posted 5/10/2017 7:07 PM (GMT 0)
Hi Harhar, just happened across your post & wanted to respond. Something you may want to consider is going online for an MS Society in your area & look to see if they have any neurologists listed. If so, I would call them & ask if a referral is needed, what the time frame is getting an appt.. I am not surprised you were told July by the office you called. Drs generally will only see so many new patients per day or even per week. The main reason is time restraints & being able to see their established patients too. They spend more time with a new patient than an established patient. Yes, I do think your dr should have made a referral for you. Private insurance usually requires a referral & most specialists require one. But with a little leg work on your part hopefully you can find a good dr to see.

Generally a neurologist orders the MRI if MS is suspected. There are many conditions with similar symptoms so it can take some time to get a proper dx.

Not surprised ER did not order an MRI. They are for actual emergencies not diagnosing things like MS. I know nothing about being put on steroids for MS or who suggested them. I think you will be safe until you can see a dr that knows what to look for. Steroids are not a medication to be used long term, they come with their own set of side effects that can be bad.

It is strictly up to you on going to different GP. You will be starting all over again with a new dr. It will not be as simple as saying ER dr said I might have MS & being referred out.

Take care.
Posted 5/10/2017 7:42 PM (GMT 0)
Hi Harhar,

There is no symptom(s) exclusive to MS and no single test, by it's self, that can give a definitive diagnosis of MS. Many conditions, vitamin/mineral deficiencies, some medications and mental health problems can all cause similar symptoms as seen in MS. Part of the diagnostic criteria for MS requires all other possible causes for a person's symptoms be ruled out.

Primary Care Physicians can order MRIs. A Primary Dr. can perform a Neurological exam and if the exam is abnormal would refer you to a Neurologist --- that's how my journey started.

Waiting for 2 or more months to see a Neurologist for the first time is not uncommon. Patience is needed. If a person has MS a few more months isn't going to make any difference.

Steroids do not prevent damage nor do steroids change the long term outcome of the disease. To prescribe high dose steroids without a cause would be irresponsible of a Dr.

Multiple Sclerosis doesn't cause body wide symptoms such as you are explaining. I would suggest working with your PCP to rule out some other possible causes while you wait to see a Neurologist.
Posted 5/11/2017 1:10 AM (GMT 0)
Hi Harhar,

I see you've also posted on the Lyme board. Do you feel you might have Lyme? You have symptoms not typical for MS. You seem to be very concerned with progression. Typically MS is not fast. Two months is pretty normal for a neurology exam.

I see from your Lyme board post that you have low vitamin D. That can cause many symptoms. You need to be aggressive about raising that.

As snoopy said, you'll need to rule out all other causes of your symptoms before MS will be considered. If you have a vitamin defenciency or Lyme disease, MS won't be considered.

I no longer take steroids at all for my MS. It doesn't treat the disease. The dosage is so high it's nearly intolerable.

Best of luck to you. Keep us posted.
Posted 5/11/2017 2:06 AM (GMT 0)
Hi Gretchen, Yes I did post on the lyme disease board because I have read that lyme disease can have symptoms like MS. But at the same time I'm having a fear that it could be MS! I talked to my doctor about possible lyme disease but apparently if I haven't pulled a tick off me or found a bite then it isn't lyme disease.

Just a question, typically when a flare happens does it come on suddenly? As in you get the symptoms all at once or does it slowly progress? Because that is what I mean by progression. I had some numbness in my hand last week which slowly over the week turned into weakness in my left hand and stiff muscles where I can't stretch out my fingers. That is why I fear of what will happen from now until two months! Thanks for taking the time to reply! I really appreciate it.


Gretchen1 said...
Hi Harhar,

I see you've also posted on the Lyme board. Do you feel you might have Lyme? You have symptoms not typical for MS. You seem to be very concerned with progression. Typically MS is not fast. Two months is pretty normal for a neurology exam.

I see from your Lyme board post that you have low vitamin D. That can cause many symptoms. You need to be aggressive about raising that.

As snoopy said, you'll need to rule out all other causes of your symptoms before MS will be considered. If you have a vitamin defenciency or Lyme disease, MS won't be considered.

I no longer take steroids at all for my MS. It doesn't treat the disease. The dosage is so high it's nearly intolerable.

Best of luck to you. Keep us posted.

Post Edited (Harhar231) : 5/10/2017 10:39:03 PM (GMT-6)

Posted 5/11/2017 2:14 AM (GMT 0)
I don't know, I was reading online and people said that during a flare it's best to be put on steroids as soon as possible to prevent further damage. I guess I shouldn't be reading online. Thank you for your input!

Snoopy said...
Hi Harhar,

There is no symptom(s) exclusive to MS and no single test, by it's self, that can give a definitive diagnosis of MS. Many conditions, vitamin/mineral deficiencies, some medications and mental health problems can all cause similar symptoms as seen in MS. Part of the diagnostic criteria for MS requires all other possible causes for a person's symptoms be ruled out.

Primary Care Physicians can order MRIs. A Primary Dr. can perform a Neurological exam and if the exam is abnormal would refer you to a Neurologist --- that's how my journey started.

Waiting for 2 or more months to see a Neurologist for the first time is not uncommon. Patience is needed. If a person has MS a few more months isn't going to make any difference.

Steroids do not prevent damage nor do steroids change the long term outcome of the disease. To prescribe high dose steroids without a cause would be irresponsible of a Dr.

Multiple Sclerosis doesn't cause body wide symptoms such as you are explaining. I would suggest working with your PCP to rule out some other possible causes while you wait to see a Neurologist.

confused confused confused confused confused confused
Posted 5/11/2017 1:42 PM (GMT 0)
In MS steroids are used for exacerbations of the disease, these are also referred to as a relapse, flare-up, and attack. The use of steroids in MS is to hopefully shorten an exacerbation and calm down some or all symptoms, but that doesn't always happen. Not all exacerbations require steroids and exacerbations can resolve with and without steroids.

In 32 years I have had 6 exacerbations I have only used steroids twice and that was with the first two the others I waited out. I found my exacerbations resolve in the same amount of time with and without steroids.

The more you use steroids the less effective they become. Steroids come with long term and short term serious side effects and has already been said, will not stop damage.

MS is not a one size fits all type of disease. Each person experiences an exacerbation differently.
Posted 5/12/2017 1:15 AM (GMT 0)
I was being seen by a well respected doctor at the UCLA MS center. I was complaining about how awful the high dose steroids were. She assured me that steroids do not treat nor do they prevent progression/disability. They may shorten the duration of symptoms experienced during a flare. That's it. I've not had steroids since.

Flares can be as unique as people. My flares typically hit hard and very suddenly. Example: woke up with extremely blurry vision in one eye. The vision deteriorated over 3 days to legal blindness.
Posted 5/13/2017 3:55 AM (GMT 0)
Im sorry ☹️ I hope you have recovered from that. Have you every felt body wide nerve pain? Thats my newest symptom as of today 😕 I got lucky and ended up landing an appointment in the next two weeks but it feels like a long time from now ☹️

Gretchen1 said...
I was being seen by a well respected doctor at the UCcLA MS center. I was complaining about how awful the high dose steroids were. She assured me that steroids do not treat nor do they prevent progression/disability. They may shorten the duration of symptoms experienced during a flare. That's it. I've not had steroids since.

Flares can be as unique as people. My flares typically hit hard and very suddenly. Example: woke up with extremely blurry vision in one eye. The vision deteriorated over 3 days to legal blindness.

Posted 5/14/2017 2:13 AM (GMT 0)
No. I do have nerve pain but not whole body. I have numbness and tingling from my mid-shins down. Sometimes this area develops nerve pain. This usually happens if I have over heated or if I'm sick or exceptionally stressed. All of these symptoms are related to some spinal cord damage from a specific area that has a lesion. Just like the blindness (which did resolve after 4 months) was caused by a lesion on my optic nerve.

I have chronic vertigo. Everyday 24/7 is like living on a boat. That is from a large lesion on my cerebellum.

So for MS, pain, tingling, paralysis is all associated from specific lesion damage to the brain or spinal cord.

I've never heard of anyone with MS having whole body nerve pain. You may want to consider seeing a rheumatologist. Perhaps you should be screened for fibromyalgia.
Posted 5/15/2017 9:13 PM (GMT 0)
I'm so glad your vision got better. I just thought that when MS attacks, it attacks systemically,
not just a certain location. I'm going to see a neurologist in two weeks thankfully and I will hopefully get things checked out. Thanks for your input!

Gretchen1 said...
No. I do have nerve pain but not whole body. I have numbness and tingling from my mid-shins down. Sometimes this area develops nerve pain. This usually happens if I have over heated or if I'm sick or exceptionally stressed. All of these symptoms are related to some spinal cord damage from a specific area that has a lesion. Just like the blindness (which did resolve after 4 months) was caused by a lesion on my optic nerve.

I have chronic vertigo. Everyday 24/7 is like living on a boat. That is from a large lesion on my cerebellum.

So for MS, pain, tingling, paralysis is all associated from specific lesion damage to the brain or spinal cord.

I've never heard of anyone with MS having whole body nerve pain. You may want to consider seeing a rheumatologist. Perhaps you should be screened for fibromyalgia.

Posted 5/17/2017 12:10 AM (GMT 0)
No. The attack and subsequent symptoms are related to a lesion or lesions. It's not generalized or vague, except for perhaps fatigue.

I see you've also suffered from medical anxiety. Try to hang in there while waiting to see the neurologist. I hope you are being aggressive about treating any anxiety you may be suffering from. Anxiety is serious and can be debilitating.

Keep us posted.
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