1. < Brain & Nervous System

MS? Fibro? - Still no diagnosis. Anyone else in similar situation?

Posted by puzzledami @puzzledami, Jan 24, 2016

So, wondering if anyone is in a similar situation, with similar symptoms. Gave birth to my second child, my son, in April of last year. Recovery went well (2nd csection). In June, I started feeling terrible aches in my joints. Thought maybe I had arthritis starting. But I didn't have any swelling. Saw my family doc and she chalked it up to be post partu, aches. By August, I had terrible pain in my left hip, knee, and lower back. She sent me to a rheumatologist, who ruled out fibromyalgia, arthritis, and said it was bursitis. Put me on daypro. Two weeks later, the pain had become so severe that my family doctor got me in with an orthopedic surgeon, who gave me a steroid injection in my left hip. Worked for about a week, and was back. By October I was struggling to walk. Felt like my leg was dragging, losing feeling in it. My legs would itch for no reason. Lower back and leg pain was excruciating. Started using a cane. Orthopedic surgeon ordered MRI of hip, pelvic area, and lower spine. Everything came back normal with the exception of a hemangioma on vertebra L2. So, they sent me to a neurosurgeon just last week. By this point, pain was in back and both hips now, and my left arm is getting weak now as well. Crying at the thought of using a walker. Meanwhile, my fam doc puts me on neurontin. Worked well for a week, then started losing its effect. They increased my dose, worked great. Now losing its effect again. Had brain MRI done, and that came back normal. Now I'm being sent to a neurologist. But I still have no diagnosis and feel like I'll never find any kind of medicine or therapy that helps for any length of time. Fam doc suspects MS, neurosurgeon said fibromyalgia. Doing research on the conditions confuses me. If MS didn't show on the MRI, then I have a feeling they'll diagnose me with fibro. But, I don't have any sensitive to the touch points associated with fibro. Anyone have any thoughts to help guide me in my pursuit?

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stevegrinstead | @stevegrinstead | May 20, 2023

Please check for Superficial Siderosis. One of the symptoms is sciatica.

REPLY
jenatsky | @jenatsky | May 22, 2023

For what it’s worth “What nerve does L2 affect?
L2, L3 and L4 spinal nerves provide sensation to the front part of your thigh and inner side of your lower leg. These nerves also control hip and knee muscle movements. This seems to somewhat fit with symptom picture for the MRI results.

REPLY
artemis1886 | @artemis1886 | May 2 9:40am

For MS testing is a spinal tap for a definite answer. I truthfully have been through a similar journey since I had bacterial spinal meningitis. I got it from a shot of cortisone into my back that accessed. That started my whole down fall.. a lot of your problems seem similar. I was diagnosed with piriformis syndrome.
The muscle attaches from your hip to your lower back. When the muscle is tightens and spasms it pulls on your lower back and hips. Hurts like hockey sticks. The neurologist goes in and Botox’s the right and left side. The neurologist did an EMG to confirm diagnosis. I never had lower back problems. I have fractured my back T7 and I have in my lower back.
I have been diagnosed with Fibromyalgia due to the trauma of the bacterial spinal meningitis that left me with permanent seizures and migraines. I got tired of all the neurologist in Texas since mine died. I went to see Dr Anne Oaklander. In 2018 positive for severe axonal sensorimotor peripheral polyneuropathy. In 2022 started having severe arrhythmias. Did a month holter monitor test. The electrophsiologist diagnosed me with cardiac autonomic neuropathy. I said heck no and walked out. I said something to my neurologist about it. He ordered skin biopsies and darn it came back positive so I had to go back and apologize. I have since then 2012 all my inflammatory markers are high. Negative for everything. Dr Oaklander recommended I go to Baltimore and be tested for seronegative Sjourns. There are other test for it because my bloodwork shows no to Sjourns but I have dry skin, mouth and eyes. Now I am being checked forCIDP. I have tested positive for Epstein Barr Virus after awhile it progress to Gulligen (Mispelled) Barre Syndrome. It is frustrating to be going from 2002 to current with no answers and severe pain. I have stomach ulcers so no NSAIDS. I truly hope you find the answers you are looking for. I truly understand the frustration. I get worse and no answers. The doctors will not treat the neuropathy until they find out the autoimmune disorder. I was told have to treat it before the neuropathy.

REPLY
1 reply
terlato | @terlato | May 3 11:28am

I too suffered for years not knowing what was wrong. Similar symptoms and every neurologist said there was nothing wrong. I had one more neurologist to go to and he said there is definitely something going on either Lupus, MS or HNPP. This was in 2000. So he ordered genetic testing which came back showing HNPP (Hereditary Nerve Pressure Palsy) a very rare neurological condition. I had the same problem with my legs and hips and at one point could not even use my right leg to climb stairs. Then started dealing with pain management for nerve blocks and trigger point injections, which helped with that situation. Well things got worse. I had flu like symptoms in 2011 and my entire body was in severe pain - muscle and nerve. My neurologist said it wasn't from the HNPP, so sent me to a Rheumatologist in UCLA and they couldn't figure it out, was told maybe Fibromyalgia or Polymyalgia Rheumatica???? He wasn't sure either. OMG! I knew it was not one of those. As time went on things got worse. I started getting symptoms of sweating, nausea, vomiting, forceful bowel movements, frequent urination, blurry vision and passing out! No one could figure it out. They sent me to cardiologists- had all the test looking for POTS and nothing. She suggested to see GI to rule out Neuroendocrine tumor. So after seeing GI and nothing, sent to Endocrinologist and all the test again were negative. But my Endocrinologist suggested to get a second opinion for GI. She wasn't comfortable with the results from the first one. He just said you have heartburn and a little inflammation of the stomach take some over the counter meds. Well, the symptoms continued and became worse. Every day waking up sweating, nausea, sometimes vomiting and running to the bathroom. I also have been suffering with severe and I mean severe neck, shoulder and upper arm pain and right hip, leg pain, especially in the knee and calf muscle. Nothing was taking that pain away even tried morphine and did not do anything. It was horrible and I could not function or sleep. Lost so much weight - down to 100 lbs! I was getting very depressed. In the past 6 months went to see a new GI doctor who was very concerned with my symptoms. So he did an endoscopic ultrasound and found a few nodules on my pancreas, non cancerous, not invading the ducts and will do 2 year follow up for that. Then he ordered a Hida Scan for the gallbladder. This is what changed my life around. They give you a tracer through IV and then the last 30 minutes a hormone CCK (Cholecystokinin) also IV which activates the gallbladder making it think you are eating. (results normal) Well when I got off the table my pain was completely gone!!! This was on 4/5/24 and I'm still pain free and no GI symptoms. So I did some research on CCK and found CCK was used in a clinical trial for chronic pain and its role in peripheral and central circuits in chronic pain. That was found in the Neruobiology of Pain published 5/5/22. So I went further and wanted to see what stimulates the brain to release CCK and it's the Vagus nerve. Now, if your vagus nerve is damaged it will cause severe pain in the neck shoulder and upper arms, calfs plus multiple GI problems. I also found that the Mayo Clinic is doing a Clinical trial on the Effect of Cholecystokinin (CCK) on Gastroduodenal Activity in Humans. So there is something with this hormone and vagus nerve that causes multiple problems because the vagus nerve runs through the organs and sends signals. I see my Endocrinologist on 5/10/24 and she is very excited about this and my GI doctor asked me for my notes! Sometimes you have to be your own advocate and do your research because you are the one dealing with all these symptoms. I know my vagus nerve is damaged. I've had multiple car accidents causing whip lash, the flu in 2011 and surgery which can cause damage. I had my appendix removed and a complete hysterectomy in the past. So since you had a C-Section, I'm not saying it happened, but maybe your vagus nerve was damaged. I would definitely bring this information to your doctors, especially the Neurosurgeon. I know what it's like dealing with sever chronic pain and no answers from the doctors. Not one even thought of the vagus nerve, even though I had every symptom of vagus nerve damage. Now they are suggesting to see a neurosurgeon. To me, having the Hida scan was a miracle! If the first GI doctor had ordered it two years ago I would not have had to suffer for another 2 years. I also contacted the GRIN (Global Registry of Inherited Neuropathies) and the genetic counselor for CMT (Charcot Marie Tooth Disease for which HNPP falls under) and both responded and wanted so much information from me on how and where I found my information and what I'm doing for the vagus nerve. Actually, one is calling me this weekend to discuss all of this. I think we are on a good path regarding chronic pain and ongoing GI symptoms. Please do not let them diagnose you with Fibromyalgia. One doctor told me that is the waste basket diagnosis. If they can't diagnosis you they just give you a diagnosis of Fibromyalgia. Again, please speak with all your doctors and ask a lot of questions. Be persistent! If they don't listen move on to a new doctor. Keep a journal. Google how to stimulate the vagus nerve how it can be damaged. I stimulate it every day with mediation deep breaths,I spray lavender around, foot reflexology, body massage, massaging the sides of my neck and the ears, especially the left. I hope this will help you. You have nothing to lose if you try and please never give up. No one understands the pain you are living with except you! And DO NOT let them tell you to get counseling because they don't have answers. It's not in our head it's in our body! Good luck. You need to be able to take care of your children so do whatever you can. My best to you.

REPLY
1 reply
Michele | @blessed09 | May 3 12:26pm
In reply to @artemis1886 "For MS testing is a spinal tap for a definite answer. I truthfully have been through..." + (show)
@artemis1886

For MS testing is a spinal tap for a definite answer. I truthfully have been through a similar journey since I had bacterial spinal meningitis. I got it from a shot of cortisone into my back that accessed. That started my whole down fall.. a lot of your problems seem similar. I was diagnosed with piriformis syndrome.
The muscle attaches from your hip to your lower back. When the muscle is tightens and spasms it pulls on your lower back and hips. Hurts like hockey sticks. The neurologist goes in and Botox’s the right and left side. The neurologist did an EMG to confirm diagnosis. I never had lower back problems. I have fractured my back T7 and I have in my lower back.
I have been diagnosed with Fibromyalgia due to the trauma of the bacterial spinal meningitis that left me with permanent seizures and migraines. I got tired of all the neurologist in Texas since mine died. I went to see Dr Anne Oaklander. In 2018 positive for severe axonal sensorimotor peripheral polyneuropathy. In 2022 started having severe arrhythmias. Did a month holter monitor test. The electrophsiologist diagnosed me with cardiac autonomic neuropathy. I said heck no and walked out. I said something to my neurologist about it. He ordered skin biopsies and darn it came back positive so I had to go back and apologize. I have since then 2012 all my inflammatory markers are high. Negative for everything. Dr Oaklander recommended I go to Baltimore and be tested for seronegative Sjourns. There are other test for it because my bloodwork shows no to Sjourns but I have dry skin, mouth and eyes. Now I am being checked forCIDP. I have tested positive for Epstein Barr Virus after awhile it progress to Gulligen (Mispelled) Barre Syndrome. It is frustrating to be going from 2002 to current with no answers and severe pain. I have stomach ulcers so no NSAIDS. I truly hope you find the answers you are looking for. I truly understand the frustration. I get worse and no answers. The doctors will not treat the neuropathy until they find out the autoimmune disorder. I was told have to treat it before the neuropathy.

Jump to this post

I am very new to connect so I think I responded to you a few minutes regarding a question you asked however I just realized I didn’t see your full post . Thank you for sharing there is so much confusion and conflicted info on determining MS . Spinal tap was done on me as more or less to confirm MRI’s and evoked vision testing and others.
From 2015 I have been diagnosed and treated for MS and GBS.
Two neurologist diagnosed Me with MS
One told me after another MRI w/o contrast (usually w and w/o were done) no exam of any kind not even then mental, physical standard for brain and nerve conditions. Just said mri was abnormal and could be from a variety of reasons he was the head neurologist for MS .
However , spinal tap from 2016 or to order current one which is a test done amongst MRI, evoked vision test and more.
When Mri is abnormal and patients symptoms need to be further tested. I need by last MRI and a new imaging MRA still abnormal mra should what is considered nothing nothing size aneurysm . Some vascular issues.
I became so mentally exhausted and the GBS seemed to be just something I said, but no concern or questions it’s like 6 months of intravenous plasma treatment which I believe as did my pcp landed be in hospital due to the dr.’s lack of concern or advised by nurse giving me ivig to pause a couple weeks when my veins needed heat and other things in order to find them on either arm, when my blood pressure kept getting lower with each treatment I spent more time afterwards in bed. Became anemic , developed ulcer, pneumonia , bleeding internally , blood transfusion
She was getting $3,500 each infusion from my insurance co.
Greed not my well-being took priority . All that and GBS was a note in my chart period. I had spinal surgery and still need neck surgery. Had fibromyalgia years before the journey with my brain.
I stopped seeing neurologist or other necessary specialist for thyroid , body over run with arthritis and on.
I took 3 + years being beat knocked in walks as a young teen mom and wife is there a connection to my brain and neuropathy to MS
I don’t know where to turn

REPLY
1 reply
artemis1886 | @artemis1886 | May 5 11:10am
In reply to @blessed09 "I am very new to connect so I think I responded to you a few minutes..." + (show)
@blessed09

I am very new to connect so I think I responded to you a few minutes regarding a question you asked however I just realized I didn’t see your full post . Thank you for sharing there is so much confusion and conflicted info on determining MS . Spinal tap was done on me as more or less to confirm MRI’s and evoked vision testing and others.
From 2015 I have been diagnosed and treated for MS and GBS.
Two neurologist diagnosed Me with MS
One told me after another MRI w/o contrast (usually w and w/o were done) no exam of any kind not even then mental, physical standard for brain and nerve conditions. Just said mri was abnormal and could be from a variety of reasons he was the head neurologist for MS .
However , spinal tap from 2016 or to order current one which is a test done amongst MRI, evoked vision test and more.
When Mri is abnormal and patients symptoms need to be further tested. I need by last MRI and a new imaging MRA still abnormal mra should what is considered nothing nothing size aneurysm . Some vascular issues.
I became so mentally exhausted and the GBS seemed to be just something I said, but no concern or questions it’s like 6 months of intravenous plasma treatment which I believe as did my pcp landed be in hospital due to the dr.’s lack of concern or advised by nurse giving me ivig to pause a couple weeks when my veins needed heat and other things in order to find them on either arm, when my blood pressure kept getting lower with each treatment I spent more time afterwards in bed. Became anemic , developed ulcer, pneumonia , bleeding internally , blood transfusion
She was getting $3,500 each infusion from my insurance co.
Greed not my well-being took priority . All that and GBS was a note in my chart period. I had spinal surgery and still need neck surgery. Had fibromyalgia years before the journey with my brain.
I stopped seeing neurologist or other necessary specialist for thyroid , body over run with arthritis and on.
I took 3 + years being beat knocked in walks as a young teen mom and wife is there a connection to my brain and neuropathy to MS
I don’t know where to turn

Jump to this post

To be truthful a lot of the same symptoms between neuropathy and MS. They both affect the nerves. My best friend had MS and I had neuropathy. The symptoms we had were a lot a like. She passed away in a car wreak. Since neuropathy affects the autonomic nervous systems we both had problems with it affecting our heart and bladders and gastroparesis. I had more of the gastroparesis than she did. They both affect the myelin sheath on the nerves

REPLY
1 reply
Michele | @blessed09 | May 8 12:36pm
In reply to @artemis1886 "To be truthful a lot of the same symptoms between neuropathy and MS. They both affect..." + (show)
@artemis1886

To be truthful a lot of the same symptoms between neuropathy and MS. They both affect the nerves. My best friend had MS and I had neuropathy. The symptoms we had were a lot a like. She passed away in a car wreak. Since neuropathy affects the autonomic nervous systems we both had problems with it affecting our heart and bladders and gastroparesis. I had more of the gastroparesis than she did. They both affect the myelin sheath on the nerves

Jump to this post

I had no idea so many other organs or parts of body were also affected
It one specialist for this another for that and it seems there is no specialist who puts it all together for us does that make sense? My pcp is sending me to gastroenterologist for weight lose and I had ulcer and GERD with esophagitis my appt is in September it’s all too much

REPLY
artemis1886 | @artemis1886 | May 12 3:23pm

I have gastroparesis due to the neuropathy. Slow digestion and I can go days without eating. It gets very frustrating going from doctor to doctor. My weight fluctuates so much I go from 165 too 208 all due to the neuropathy. My feet and legs are huge swollen. The carpet and wooden floors both hurt my feet.
It’s frustrating because a lot of doctors can’t put two and two together because they do not know that much about neuropathy so getting a doctor to link everything together is difficult. That’s why I went to see Dr Oaklander from Boston for answers. Things that weren’t being linked together she linked them together. She has a bunch of lectures online. I have had stomach ulcers and Gerd for over 15 years. I quit taking the medication and started a strict diet. When all the information saying these drugs have been linked too dementia. I have enough problems without dementia.

REPLY
delia74 | @delia74 | May 13 7:27am
In reply to @terlato "I too suffered for years not knowing what was wrong. Similar symptoms and every neurologist said..." + (show)
@terlato

I too suffered for years not knowing what was wrong. Similar symptoms and every neurologist said there was nothing wrong. I had one more neurologist to go to and he said there is definitely something going on either Lupus, MS or HNPP. This was in 2000. So he ordered genetic testing which came back showing HNPP (Hereditary Nerve Pressure Palsy) a very rare neurological condition. I had the same problem with my legs and hips and at one point could not even use my right leg to climb stairs. Then started dealing with pain management for nerve blocks and trigger point injections, which helped with that situation. Well things got worse. I had flu like symptoms in 2011 and my entire body was in severe pain - muscle and nerve. My neurologist said it wasn't from the HNPP, so sent me to a Rheumatologist in UCLA and they couldn't figure it out, was told maybe Fibromyalgia or Polymyalgia Rheumatica???? He wasn't sure either. OMG! I knew it was not one of those. As time went on things got worse. I started getting symptoms of sweating, nausea, vomiting, forceful bowel movements, frequent urination, blurry vision and passing out! No one could figure it out. They sent me to cardiologists- had all the test looking for POTS and nothing. She suggested to see GI to rule out Neuroendocrine tumor. So after seeing GI and nothing, sent to Endocrinologist and all the test again were negative. But my Endocrinologist suggested to get a second opinion for GI. She wasn't comfortable with the results from the first one. He just said you have heartburn and a little inflammation of the stomach take some over the counter meds. Well, the symptoms continued and became worse. Every day waking up sweating, nausea, sometimes vomiting and running to the bathroom. I also have been suffering with severe and I mean severe neck, shoulder and upper arm pain and right hip, leg pain, especially in the knee and calf muscle. Nothing was taking that pain away even tried morphine and did not do anything. It was horrible and I could not function or sleep. Lost so much weight - down to 100 lbs! I was getting very depressed. In the past 6 months went to see a new GI doctor who was very concerned with my symptoms. So he did an endoscopic ultrasound and found a few nodules on my pancreas, non cancerous, not invading the ducts and will do 2 year follow up for that. Then he ordered a Hida Scan for the gallbladder. This is what changed my life around. They give you a tracer through IV and then the last 30 minutes a hormone CCK (Cholecystokinin) also IV which activates the gallbladder making it think you are eating. (results normal) Well when I got off the table my pain was completely gone!!! This was on 4/5/24 and I'm still pain free and no GI symptoms. So I did some research on CCK and found CCK was used in a clinical trial for chronic pain and its role in peripheral and central circuits in chronic pain. That was found in the Neruobiology of Pain published 5/5/22. So I went further and wanted to see what stimulates the brain to release CCK and it's the Vagus nerve. Now, if your vagus nerve is damaged it will cause severe pain in the neck shoulder and upper arms, calfs plus multiple GI problems. I also found that the Mayo Clinic is doing a Clinical trial on the Effect of Cholecystokinin (CCK) on Gastroduodenal Activity in Humans. So there is something with this hormone and vagus nerve that causes multiple problems because the vagus nerve runs through the organs and sends signals. I see my Endocrinologist on 5/10/24 and she is very excited about this and my GI doctor asked me for my notes! Sometimes you have to be your own advocate and do your research because you are the one dealing with all these symptoms. I know my vagus nerve is damaged. I've had multiple car accidents causing whip lash, the flu in 2011 and surgery which can cause damage. I had my appendix removed and a complete hysterectomy in the past. So since you had a C-Section, I'm not saying it happened, but maybe your vagus nerve was damaged. I would definitely bring this information to your doctors, especially the Neurosurgeon. I know what it's like dealing with sever chronic pain and no answers from the doctors. Not one even thought of the vagus nerve, even though I had every symptom of vagus nerve damage. Now they are suggesting to see a neurosurgeon. To me, having the Hida scan was a miracle! If the first GI doctor had ordered it two years ago I would not have had to suffer for another 2 years. I also contacted the GRIN (Global Registry of Inherited Neuropathies) and the genetic counselor for CMT (Charcot Marie Tooth Disease for which HNPP falls under) and both responded and wanted so much information from me on how and where I found my information and what I'm doing for the vagus nerve. Actually, one is calling me this weekend to discuss all of this. I think we are on a good path regarding chronic pain and ongoing GI symptoms. Please do not let them diagnose you with Fibromyalgia. One doctor told me that is the waste basket diagnosis. If they can't diagnosis you they just give you a diagnosis of Fibromyalgia. Again, please speak with all your doctors and ask a lot of questions. Be persistent! If they don't listen move on to a new doctor. Keep a journal. Google how to stimulate the vagus nerve how it can be damaged. I stimulate it every day with mediation deep breaths,I spray lavender around, foot reflexology, body massage, massaging the sides of my neck and the ears, especially the left. I hope this will help you. You have nothing to lose if you try and please never give up. No one understands the pain you are living with except you! And DO NOT let them tell you to get counseling because they don't have answers. It's not in our head it's in our body! Good luck. You need to be able to take care of your children so do whatever you can. My best to you.

Jump to this post

I commiserate with all that you've undergone....I can't comment more right now but would so appreciate contact info for GRIN and also defining just what GBS stands for.

REPLY
1 reply
terlato | @terlato | May 13 8:19am
In reply to @delia74 "I commiserate with all that you've undergone....I can't comment more right now but would so appreciate..." + (show)
@delia74

I commiserate with all that you've undergone....I can't comment more right now but would so appreciate contact info for GRIN and also defining just what GBS stands for.

Jump to this post

I know we are all going through the same and it is very frustrating that doctors have no answers, but we are suffering with the symptoms.

GRIN- Global Resgistry for Inherited Neuropathy
Join GRIN! About The Global Registry for Inherited ...
hnf-cure.org
https://www.hnf-cure.org › grin-patient-registry › join-gr...
GRIN Global registry for inherited neuropathy from http://www.hnf-cure.org
The Global Registry for Inherited Neuropathies (GRIN) is a global patient-focused research database that represents patients and families via vital Natural ...

GBS - Guillain-Barre Syndrome
Also go on website: NORD - National Organization for Rare Disorders

You just have to keep searching to find your own answers.

I saw my endocrinologist and they can't give the hormone CCK because it has many side effects which are irreversible. She also suggested to see a Neurosurgeon because she thinks it has to do with the Vagus nerve. I'm going to see my Neurologist first in June and hopefully will start getting answers and referral to Neurosurgeon.

I hate to say, but my muscle pain is coming back, but only when I wake up. Muscle are very stiff in neck, shoulders, upper arms and calfs. I've started getting spasms again in the calfs during the night. Once I move around it seems to get better. My GI symptoms have stopped and I pray they don't start up again. But, two doctors agree it is the vagus nerve causing the GI symptoms.

Hope this information is helpful. I pray for all of us!

REPLY
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