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Pain and MS

I will begin my story and Dr. Frustrations by stating that my neurologist is not an MS specialist and I think this is the biggest issue here. I am going to see her tomorrow and would appreciate any guidance on how to handle the visit.
I've had a plethora of symptoms for the past 10 years. I never thought too much about any of them until my body began a downward spiral at 31. I am now a few days shy of 35. At 31 I lost an ovary. At 32 I had a full hysterectomy. Last year at 33 I had right shoulder surgery. I was bouncing back slower and slower. I've had cognitive issues for at least 7 years. Issues with motor skills for the past few years ever worsening by the week now. I've had numbness in my fingers and hands for appx 5 years. With all this I just kept on trucking. Working hard. Staying active. Healthy diet. This year since January I've gained ALMOST 30 lbs, then in April I began have debilitating neck pain and stiffness. That remitted after a couple of weeks then returned in May. It remitted again for a few days then I awoke one day to massive pain in my lumbar spine. I took a few days off of work then finally broke down to go see my Ortho. He xrayed me immediately and prescribed pain meds and prednisone. Upon follow up he saw a slight herniation at my bra line which he said was uncommon but not unheard of. By the follow up the pain had spread to my right hip, knee, and foot. He told me to rotate ice and heat and to continue the prednisone therapy. I continued to not get any better. The pain got worse no matter how much rest I was getting and the cognitive symptoms were worsening as well. He referred me to a neurologist. Upon consultation she immediately said she thought I had sleep apnea and was clinically depressed but was going to order a neuro and cervical MRI "to put my mind at ease". MRI results come back and show severe disk degeneration (arthritis) in my neck as well as 11 + lesions on my brain. At the time of the appointment she had still not reviewed the actual scans and had ordered a spinal tap just on the radiologists findings. That was brutal. The "feeling around" to find the insertion point was genuinely more painful than the tap itself. We had to wait about 30 mins after the tap for the courier to get there with the disc so we could review the neuro MRI together. While reviewing she says in a surprised tone "oh you do have quite few. That ones pretty large. " of that one panel she counted 11 lesions. She did not discuss where they were placed or what that meant regarding my symptoms. For 2 weeks I've called for my results as well as pulled teeth to get my refill of 5/325 hydrocodone filled. I am in DEBILITATING pain at this point. The only way I can comfortably participate in life right now is with that pain medication. Today after raising a huge fuss about no feedback on the tap, it taking 48 hours every week to get my refills, and that my spinal migraines weren't being addressed at all I get a call from the actual Dr. (I started having migraines 2 days after my tap. I have one almost daily now) My Dr seems very nonchalant about it all. Yes I have Probable MS at this point but she believes my pain is a result of the arthritis in my neck and depression/stress. She prescribed fioricet for the migraines and said this is the first she had heard I was having this issue (I discussed it multiple times with her PA) but hesitated on the hydrocodone and pretty much said this would be the last refill. I'm pissed and frustrated because they treat you like an addict and hell you feel like an addict. Yes I am SCARED the day before my meds are going to run out but not because I'm going to miss out on being stoned or high or whatever but because I know I'm going to be MISERABLE and not able to function. The meds sure don't help the cognitive part of my symptoms but they help me get my *** out of bed and participate in life with my family. Take a ride in the car. The little things I used to take for granted. From everything I've read pain is a common side effect in many patients. It's like she won't even consider that notion. I have no doubt quite a lot is coming from arthritis but at 34 why the hell is my cervical spine arthritis so bad???? Thanks for letting me rant. PLEASE GIVE ME SOME ADVICE!!!
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Avatar universal
Oh, I meant to add that I was just diagnosed in April so it's still kind of a fresh wound if you couldn't tell.  It's been a rough few months dealing with all of it.  

I'm sorry you are getting the run around with the pain meds, I agree with HVAC, go to a pain management doc to get sorted out, and get a neuro that specializes in MS.  You don't have to put up with unsympathetic doctors, there are plenty of them out there.  Good luck in finding better doctors!  
Helpful - 0
Avatar universal
I hear ya!  I had a similar experience, I started having constant headaches and several migraines a week and that continued for a YEAR!  My doc said "it's just chronic migraines" and only gave me a couple of refills on Fioricet and then was concerned about dependancy too.  I tried the Imitrex and Maxalt but those didn't work so I just had to suffer it out with constant daily headaches, a newborn (this all started the week after I gave birth) and a 2 year old.  

I had back and neck and foot pain and was sent to a Rheumatologist who put me on Prednisone for over 6 months and really did nothing else, never really even examined me and told me all my complaints of numbness wasn't related or serious.  I finally cried to my primary doc that I was scared I had a brain tumor or something and would she please do an MRI to ease my fears and she did.  What do you know, there were more lesions since my first relapse 5 years prior where it was suspected I had MS or CIS!  Yes, she knew of that history and I even asked about possibly MS coming up again andwas blown off.  

At my first neuro appointment, the doc walked in and said, you have ms, no doubt about it.  I spent a lot of money that year and a half and a lot of time and misery suffering through an enormous relapse with no medication to help me.  I also learned from my neuro that it is common for people to be very healthy while pregnant but to have a relapse after they give birth.  Duh. I was (still am a little) so angry with my doc (and the rheumy) for blowing me off with that huge, lurking MS possibility and being lazy with me.  I don't know that it would have changed anything but I would have enjoyed my daughter's first year a lot more.
Helpful - 0
382218 tn?1341181487
Can you describe the pain you are having in the various parts of your body? Sometimes the description of the pain can help the clinician determine the cause, whether neurologic or other.
Helpful - 0
Avatar universal
Thank you all so much. Yes I go through times where a rant is just what I need. I have already scheduled an appointment for Monday with Ortho to go over the MRI of my neck. I have a follow up with Neuro on Thursday to discuss treatment plans. I plan to go into neuro with a list of questions and citations. If I feel they're really engaged and knowledgeable I may continue treatment with them. If not I will most likely pull my records and find an MS specialist. I also have pain in my feet. Worse in the morning. Not sure if that's from neck or MS yet though. On a bright note though the fioricet killed the migraine monster. I haven't had once since. Thanks again for the support and advice.
Helpful - 0
667078 tn?1316000935
I finally went to a pain clinic. It was the best thing I ever did. It took about a year to come up with the right combination of medications to work.

Alex
Helpful - 0
5112396 tn?1378017983
Thank you for dividing that, Kyle.

Wow! That's a tough assortment of things you've been dealt! Kyle is spot on that some things are likely not related, and I second his suggestion that a good next step is finding an MS specialist (though I'd understand if you'd be happy to never see another white coat ever again at this point!). There is a definite skill set needed to confidently diagnose MS, since we're still waiting on that magic 'yes/no' test!

I can't really add to his advice other than to point you to our Health Pages that may have some information of interest for you http://www.medhelp.org/health_pages/list?cid=36

The space to rant is one of the best qualities about this forum. It's sometimes my safe place to do just that!




Helpful - 0
1831849 tn?1383228392
Hi again...

With so much going on it can be difficult to sort through everything, and tempting to try and put it all under one roof. Some of what you describe can be associated with MS, while some is likely unrelated.

Your surgeries are likely unrelated. Little associated with MS can be fixed surgically. The cognition and motor skills challenges, as well as the numbness in your hands may be MS related.

The pain issues are harder to sort out, given that you have some disc herniation  and arthritis. MS can cause sever pain. I have neuropathic pain in my fee that I treat with medication. My meds are not opiates, but rather an antidepressant and and anticonvulsant. They don't know why but these meds, by themselves and in combination, seem to work well resolving neuropathic pain.

I have had arthritis in my hip with pain so severe I couldn't walk 25 feet. I understand what constant pain is all about. I eventually had my hip replaced. My hip issue was in now way related to my MS.

In your shoes I would start by finding an MS specialist. They will be much better equipped to help you sort through things.

Kyle
Helpful - 0
1831849 tn?1383228392
Hi KimBoLee,

Welcome to our little chat fest. Many of our friends have visual issues which make reading large blocks of text difficult if not impossible. I have taken the liberty of breaking you post up a bit.


I will begin my story and Dr. Frustrations by stating that my neurologist is not an MS specialist and I think this is the biggest issue here. I am going to see her tomorrow and would appreciate any guidance on how to handle the visit.

I've had a plethora of symptoms for the past 10 years. I never thought too much about any of them until my body began a downward spiral at 31. I am now a few days shy of 35.

At 31 I lost an ovary. At 32 I had a full hysterectomy. Last year at 33 I had right shoulder surgery. I was bouncing back slower and slower. I've had cognitive issues for at least 7 years. Issues with motor skills for the past few years ever worsening by the week now. I've had numbness in my fingers and hands for appx 5 years.

With all this I just kept on trucking. Working hard. Staying active. Healthy diet. This year since January I've gained ALMOST 30 lbs, then in April I began have debilitating neck pain and stiffness. That remitted after a couple of weeks then returned in May. It remitted again for a few days then I awoke one day to massive pain in my lumbar spine.

I took a few days off of work then finally broke down to go see my Ortho. He xrayed me immediately and prescribed pain meds and prednisone. Upon follow up he saw a slight herniation at my bra line which he said was uncommon but not unheard of.

By the follow up the pain had spread to my right hip, knee, and foot. He told me to rotate ice and heat and to continue the prednisone therapy. I continued to not get any better. The pain got worse no matter how much rest I was getting and the cognitive symptoms were worsening as well. He referred me to a neurologist.

Upon consultation she immediately said she thought I had sleep apnea and was clinically depressed but was going to order a neuro and cervical MRI "to put my mind at ease". MRI results come back and show severe disk degeneration (arthritis) in my neck as well as 11 + lesions on my brain.

At the time of the appointment she had still not reviewed the actual scans and had ordered a spinal tap just on the radiologists findings. That was brutal. The "feeling around" to find the insertion point was genuinely more painful than the tap itself. We had to wait about 30 mins after the tap for the courier to get there with the disc so we could review the neuro MRI together.

While reviewing she says in a surprised tone "oh you do have quite few. That ones pretty large. " of that one panel she counted 11 lesions. She did not discuss where they were placed or what that meant regarding my symptoms. For 2 weeks I've called for my results as well as pulled teeth to get my refill of 5/325 hydrocodone filled. I am in DEBILITATING pain at this point.

The only way I can comfortably participate in life right now is with that pain medication. Today after raising a huge fuss about no feedback on the tap, it taking 48 hours every week to get my refills, and that my spinal migraines weren't being addressed at all I get a call from the actual Dr. (I started having migraines 2 days after my tap. I have one almost daily now)

My Dr seems very nonchalant about it all. Yes I have Probable MS at this point but she believes my pain is a result of the arthritis in my neck and depression/stress. She prescribed fioricet for the migraines and said this is the first she had heard I was having this issue (I discussed it multiple times with her PA) but hesitated on the hydrocodone and pretty much said this would be the last refill.

I'm pissed and frustrated because they treat you like an addict and hell you feel like an addict. Yes I am SCARED the day before my meds are going to run out but not because I'm going to miss out on being stoned or high or whatever but because I know I'm going to be MISERABLE and not able to function. The meds sure don't help the cognitive part of my symptoms but they help me get my *** out of bed and participate in life with my family. Take a ride in the car. The little things I used to take for granted.

From everything I've read pain is a common side effect in many patients. It's like she won't even consider that notion. I have no doubt quite a lot is coming from arthritis but at 34 why the hell is my cervical spine arthritis so bad???? Thanks for letting me rant. PLEASE GIVE ME SOME ADVICE!!!
Helpful - 0
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