Perplexed But Certain I Have MS

[PossibleMS]

Hello .... I'm new to this forum and wanted to share my health concerns hoping for feedback. Female, 46 years of age. In April of 2013 I experienced disturbing symptoms which landed me in the office of a neurologist who conducted multiple tests. An LP, MRI of Cervical Spine / Brain, blood panel, nerve conduction studies etc. All of which were negative or inconclusive. With one exception: The radiologist noted I had degenerative disc desease C3-C4 and C5-C6 with broad- based bulging at these two levels. He indicated that this did not appear to cause any significant canal stenosis but there was minimal left lateral narrowing at C5-C6. My symptoms at that time included:

• Severe joint pain (all joints)
• Intermittent speech differences
• Heart palpitations
• Intermittent sharp pains below heart and above

Next set of symptoms accelerating for approx. 1 month in addition to the aforementioned :

• Head/neck pain, stiffness in neck/left jaw pain
• Stabbing pain behind left eye (intermittent)
• Tingling pain in left arm and leg
• Joint pain constant
• Vertigo
• Occasional tremors
• Light sensitivity
• Flu- like symptoms
• Aching stomach primarily after a meal/nausea
• Dizziness primarily when rising from horizontal position
• Fatigue/Chills systemic (especially in last week)
• Vague achiness across chest (intermittent)
• Head pain/pulsations/popping various areas of head/heat sensations accompany
• Head pressure throughout
• Constant headache for approximately 3 weeks
• Tinnitus/ringing & humming in ears and sensitivity to sound
• Burning/tingling heat sensations primarily in back of head.
• Lower back pain (constant)

The above were the symptoms I submitted to the neurologist in April 2013. Over a period of months, the symptoms subsided and I felt normal again. In February 2015 I noticed a suspicious pain in my left hip / thigh. One month ago, I began to feel very sick and run down. I tested positive for strep throat. After 10 days of antibiotics, strep was cleared. During same time I had severe GERD and still have it even after a full two weeks of Prilosec. In April I had a horrible sinus / cold problem that has recurred three times since but not significant. Two weeks ago I had a painful migraine headache. The headache was centered from mid to aft portion of head only. After taking two Advil, the headache seemed to subside. Since then however, I have had a lingering dull aching headache that has remained in same area of head region and neck. In the last 8 days I have had multiple symptoms crop up all at once which landed me in the ER three days ago. My symptoms currently include:

• Headaches (primarily left side of head but constant)
• Numbness / tingling all 4 limbs
• Painful GERD
• Vertigo
• Hip and thigh pain –upper left
• Painful Neck pain- upper left / right
• Flu like symptoms (consistent)
• Extreme fatigue
• Lower back pain
• Glute pain (primarily left side)
• Frequent and returning heart palpitations
• Mild tinnitus
• Heat and Cold sensations on face
Tongue tingling
Pelvic discomfort, pain and bloating
Breast tenderness and soreness L&R sides
• Sharp shooting stabbing pain near / around heart
• Evaluated by various cardiologists. Stress echocardiograms, 30 day event monitor EKGs- all unremarkable.

The soonest I can be seen by a MS specialist is in mid July. All others are booked out until August. The numbness and tingling was fluctuating but not consistent and in all limbs. Everything else is still present. The frightening aspect of this is how quickly and aggressively it happened. Further, the fatigue is overwhelming. Very much a challenge taking care of my toddler when so exhausted.

Thoughts? Ideas?
:(

[suspiciouscombo]

This illness is challenging on all fronts. Not only does the illness affect us physically, but targets our emotions as well in an overwhelming sphere. I'm still in limbo land but certain of my outcome considering the recurring symptoms along with two well respected medical professionals stating I am on the right path. Thus, I feel your frustration. As a result, I will refrain from judgement since I've experienced the same sensitivity at times. With this, others I have known for years have slowly vanished as they are unable to understand or are without the ability to show support due to their fear or absence of understanding. Hence, this is why we turn to support groups. What they don't know, is that compassion and support goes a long way which should override any fear of concern in how to support another.

For decades, I have always remained strong, steadfast and confident in navigating through any adversity. That said, this is one adversity that has brought me down to a low I never knew existed. I get it! I get what you are enduring as well as all members in this forum.

I write the above to share this........Regarding your previous post, it would seem you were simply seeking "support" not a "diagnosis." As it should be. It is my belief that the responses are not the issue, negative or upsetting in any way.

Please know many can sympathize and relate to your position. we are here to support you and all future endeavors / challenges you seek.

In complete support :)

[HVAC]

I am not sure what about my comments was negative. I am just honest about what to expect. I felt I was being dismissed by my neurologist until I found out how many neurologists are. I thought I would get a diagnosis quickly. I believe something is going on. Going to a MS Specialist will help.

Alex

[karryon55]

I am sorry that your question was missed for about 17 hours but this is not at all unusual considering the amount of posts that come onto this forum. Please type in the word "bump" and press post if you want your question to reach the top of the pile.

I'm not sure where you are coming from at all with your statement about regretting raising funds for MS and I find that confusing as well as rather distasteful.

I hope you find out what is causing your symptoms and you have a successful visit with the Neurologist.

[immisceo]

You were answered truthfully and to the best of our nonprofessional abilities in the little free time some of us have, and your conclusion is regret in ever raising money to help us and your diagnosed friend.

I'm truly speechless. I've read a lot on these boards over the last four years. Never anything like this.

[supermum_ms]

I'm terribly sorry you feel disappointed and our support isn't good enough for you.......i understand that your feeling frustrated and scared but please don't attack us for not knowing how to help you more than we have.

Please think of who you are criticizing, we are not doctors and can only offer advice from our personal knowledge of MS and life experience........your last post is truly sad to read!

I hope you find your answers, and despite your disappointment in our community, I do actually hope you get the medical attention you seek soon, i would recommend you have an open discussion with your family GP about what's going on, whilst your waiting to see the neurologist in July.

Peace.........JJ

[PossibleMS]

And to think of the thousands I've contributed to the MS walks and fundraising. The support here is quite disappointing. Thus a true regret in my efforts for the cause. Take care.

[PossibleMS]

I am not crazy or suffering from anxiety. Whatever is transpiring quickly is concerning.  Unable to receive help from ER department and unable to obtain assistance from a neurologist  right now. In the last three hours the left hip pain I mentioned in my original post that I've experience for months has completely vacated. In its place and in the last three hours I have felt nothing but weakness in  upper left quad and thigh.  Numbness and tingling in lbs has also progressed. It feels heavy . Not yet dragging my left foot but definitely scraping the ground every few steps when bringing left leg forward. Very confused but still seems like MS. If no response to this post .....I inderstand and will refrain from posting further.  Thank you.

[PossibleMS]

Waking up every single morning with constant numbness and tingling in both hands and bottom of feel (mostly in left side) is frustrating. Still cannot get into a neurologist until July. All while the symptoms worsen especially the delayed and blurred vision. Reading a book is impossible as the words via my eyes are not still. What I did find interesting however is that I have been on an airplane for business twice in the last two weeks. When flying at altitude, my symptoms seems to subside. But as soon as we land, they return. Just wondered if anyone else has experienced this. The only thing that remains consistent when at altitude is my difficulty in pronouncing any word with an S and L. Frustrated.

[PossibleMS]

A sincere thank you to all who have taken the time to provide feedback. First and foremost, if this helps, please know that every year we participate in the MS walks and financial funding for research. Just completed the Colorado Springs MS walk a few weeks ago. My hip was giving me problems so the 3 mile was the only option for me. However, the turnout was great.

No family history of MS but a close friend of ours was stricken with MS approx 12 years ago. I volunteered in administering weekly Avonex injections which is why I recognize possible signs and symptoms when they arise. Given I had a very similar episode a few years ago, has me on a higher awareness. Unremarkable findings for an answer or explanation as to why even with clinical testing is even more concerning. More concerning as the symptoms seem to return. This constant buzzing and tingling in my hands and bottom of feet are a continuous reminder as well as the vertigo, blurred vision, and extreme fatigue is horrible which I have learned can make a person feel quite nauseous. Getting plenty of sleep yet tired all day. Please know I'm trying to hold out hope that this is nothing more than symptoms of extreme GERD or degenerative disc issues. or even possibly as you convey, a viral / bacterial residual experience. I'm open for any other possibilities. Sadly, when physicians convey that the other symptoms do not correlate with the above it pushes me back into the neuro MS fear.

[PossibleMS]

Apologies as I don't think I conveyed why I included the seemingly non related symptoms. Those symptoms occurred during this episode of neurological symptoms. Due to the variances of MS symptoms from person to person, I'm wondering if the recurring symptoms from 2013 are related. I do remember the neurologist verbalizing nothing was found on the MRI and that this may not be MS at that time, but she stated that 10 years from that date could be another story. That unknown is frustrating. Secondly, I've read so many cases where patients complained of unexplained hip, and back pain yet no Orthopedic issues. Soon after, they the other symptoms appear as mine did. This is concerning to me. Though I have had prior injuries at youth, some of these other symptoms due to disc degenerative disease would not cause some of the other neuro symptoms. Lastly, at the onset of these symptoms a few weeks ago, the tingling and numbness began in left leg and arm. Then it migrated to all limbs and remained consistent. This morning, I noticed it seems to be in the left arm and leg, foot only again.

[immisceo]

You have a lot of objective negative tests. This points away from MS.

You have an objective test result indicating a structural issue of the spine. This points away from MS as the cause of some things you mention. You also experienced extreme spinal trauma in the past. Again, this is evidence in another direction.

MS does not directly cause joint pain.
MS does not effect heart rate.
MS does not cause breast pain.
Vertigo, aches, fatigue, pain are all vague symptoms and don't really point to anything in particular in and of themselves either in isolation or considered all together.
You have recently had a series of viral and bacterial infections that can cause lingering issues even after they are treated or cleared by the immune system.

I'm glad you'll be seeing a professional about this relatively soon, but to be honest, nothing you mention sounds like MS. And a reminder - most of us with MS live perfectly normal lives with a few modifications. It's not even close to 'worst case scenario'!

[PossibleMS]

Indeed....the other symptoms such as the GERD etc..are not related but odd they all occurred at same time. For this reason I categorized much of it under that umbrella of symptoms. Such a frightening experience. And it seems as though we all have to endure a few neurologists for answers.

[HVAC]

I guess seeing the MS Specialist will help rule it in or out. It is hard to be diagnosed with Negative MRIs and LPs but not impossible it will take longer. He may start all the testing over again. Even with positive test results it can take years to be diagnosed. I had all positive results for MS. I had 5 neurologists say I would be diagnosed with MS but none would diagnose it. Most neurologists want to watch you over time.

Joint pain, GERDs, nausea, heart palpitations, breast tenderness, degenerative disks, and flu like symptoms are not MS.

July is quick for an appointment with a MS Specialist. There are so few of them.

The rest could be MS or something else.

Alex

[PossibleMS]

Profuse apologies.... my mind is beyond distraught over this issue right now. Also failed to mention that at age 18 I was in a horrible car accident and fractured my entire lumbar / lower back with mild injury to neck but no fracture. I remain with a glimmer of hope that the symptoms I have are related somehow to these past injuries but 98% fearful of MS considering all other non related symptoms to degenerative disc disease.

[PossibleMS]

Failed to mention that my vision in the last week has also altered. Up close vision is very blurred and delayed focus with everyday viewing.