Hi Sjoggie-Mates,
Long time no talk to (though I do visit and read the board). I am so frustrated. Without getting into my medically-involved life story & how many years it has taken to get solid diagnoses, I will share. I am diagnosed with CVID (Common Variable Immune Deficiency) and Sjogren's Syndrome. For years I have lived with chronic pain, debilitating fatigue and many other symptoms.
Over the past several months, I have been having symptoms that seem very consistent with Parkinson's. (Resting head tremor; internal tremors; stiff/rigid (almost spastic) gait;slow, shuffling gait in a.m.; constipation; bladder (frequency); hyper-reflexes; headaches, leg muscle weakness; sleeplessness, nausea (to name a few). I made an appointment with a Movement Disorder Specialist that I can't get into until next May.
In the meantime, I decided that my back pain is getting so bad (my eyes are rolling in my head..as in..on a scale of 1-10...I am staying at an 8 or 9). I decided that when I moved my mom here from Florida this spring, maybe I herniated a disc. I established a new PCP that I saw last week. I told him I think I may have a herniation. He ordered both a thoracic & low back MRI. I just got the results: my entire spinal column is bulging (every disc is involved), I have one herniation at T3-T4, a T1 & T2 hyperintense lesion within the L4 vertebral body; disc material abuts the L4 nerve roots; kyphosis, and it goes on.
I am wondering if all of these neurological symptoms are totally from my back issues and not a movement disorder. I can find very little info on whether these types of back problems can cause a resting head tremor or internal tremors (though the rest of the neurological symptoms most surely could be explained by the back problems.
I have a feeling someone is going to be telling me I need a back surgery pretty quick...as usual I am trying to figure out which issues are being caused by which diagnoses? For instance...if my spastic/rigid gait is being caused by a movement disorder, then I would not want to rush into a serious back surgery. I don't know how to sort it all out. I know if I go to a surgeon, they will say surgery (that is what their job is). And...which type of surgeon (an orthopedic surgeon or neurosurgeon)? Yikes! I will add that I have already had 2 spine surgeries (a diskectomy and spinal fusion) many years ago.
I believe I hear the echo of..It's always something..and then it's something else.
So frustrated...thanks for letting me rant.
SjoDry
Dear SjoDry,
I am so sorry to hear about your pain and predicament. I've been in your shoes, experiencing an array of painful and often frightening symptoms and having no idea what might be the cause or if there is more than one.
I spent about 9 years going to doctors and receiving multiple diagnoses, many of which are it turns out, were all real conditions which I have. It took a bit longer to finally find a treatment regime that has worked, though nothing seems to work for long.
How good is your PCP, can you trust her or him to serve as a gatekeeper to other docs and to help you decide whom to see next? At first, it was my PCP who was convinced that I was sick, very sick, and it had a systemic cause. She sent me to doc after doc until I assembled a team to whom I turn.
The downside is there is no one person to whom I can turn. The neurologist answers questions such as could this be MS (or in your case Parkinson) or is this from similarly screwed up spine. The rheumatoligist deals with my RA and OA, the orthopedist with my OA.
Finally, there are times when I turn to my PCP to ask who I should see for a specific issue. I explain what is transpiring then she makes a suggestion. It has helped enormously to have a doc who can serve in this role.
Sjodry
So sorry to hear this.
I have developed multiple disc herniation in just 20 months since I developed first Sjogren symptom. I have no family history of disc herniation nor did I lift any weights. So my disc herniation is clearly caused by sjogren.
So I have researched a lot and a very good orthopedic happens to be my family friend. He strongly advised me just to do physiotherapy and avoid surgery !
My pain is reducing but very slowly. I also understand that surgery may just make things worse. Also in Sjogren, we are likely to disc herniation in all the discs that we have, so surgery should surely not be touched.
All the best.
Dear SjoDry,
My heart goes out to you!
I Googled "hyper intense vertebral lesion" from the MRI of your spine, just out of curiosity.
I'm not a medical person, so what I say doesn't really count, but as far as I could see from extensive pubmed research, "a T1 & T2 hyperintense lesion within the L4 vertebral body" is very common, and nothing to worry about.
The results of my Google efforts are at the end of this post.
The PCP who ordered your MRI isn't a specialist, but I'm curious about what he/she had to say about the MRI. If you are considering surgery (again) on your spine, an orthopedic surgeon will review this MRI as part of diagnosis and decision about surgery.
You've already had back surgery, and I can't imagine you are looking forward to more surgery.
In my case I have profound peripheral neuropathy and as part of the effort to find the cause, MRI's of my spine were taken.
This is because problems with the spine can cause both problems with walking, and also tremors, headaches, and bowel and bladder problems.
Of course it turned out that my neuropathy is NOT related to problems with my spine, but rather is caused, in all probability, by an attack on my nerves by my immune system. I have a lot of neurological damage, throughout my body, with new problems showing up all of the time, it seems!
I hope you find out what is causing your symptoms, SjoDry.
Regards, Elaine
Quote: Another common problem is the presence of small T2 hyperintensities on MRI studies of the CNS, typically referred to as unidentified bright objects (UBOs) by neuroradiologists. These nonspecific lesions are relatively common in the general adult population.
https://emedicine.medscape.com/article/1146199-differential
Quote: Degenerative hyperintense vertebral lesions are extremely common in the course of the degenerative disease of the spine and in a large majority of the cases are diagnosed very easily based on their typical signal characteristics, location adjacent to the vertebral endplates and coexistence of other signs of spine degeneration, e.g. degenerative disk disease.
https://www.researchgate.net/publication/221930579_Hyperintense_vertebral_lesions
It is really hard to know which symptoms goes with which illness. Many of these diseases we have are autoimmune collagen diseases and they all have symptoms of body aches, muscles, tendon issues, etc. And the list goes on.
Actually, there are so many symptoms that go with every autoimmune disease. The big symptoms such as the organ failure issues of lupus, Wegeners, etc are more apt to stand out especially in the later stages. We all have a big job just keeping track of what is going on with our body. Then we can have issues that could be autoimmune....or maybe it is from a drug that we are taking.
It is always something that is hard to sort out. Just have to take it the way it is and hang in there. Generally we have all learned to suffer for awhile and if goes away and doesn't come back we are happy. If it stays and gets worse we are off to the doctor. Wish there was a cut and dried methodology to figuring all this stuff out. Good luck with your issues. I have a large amount of neurological issues with pain also and these are hard to sort out. Irish
Thanks for all of your thoughtful responses.
I was able to touch base with an orthopedic surgeon & my new pcp. Both docs felt that my neurological issues are not being caused from the back problems. They both told me to keep my May appointment with the Movement Disorder Specialist. My pcp told me I absolutely need to see a neurosurgeon (I tried to ignore the urgency in his voice as he rattled off all of the diffuse changes in my back). I was able to find a good Hopkins trained neurosurgeon...can't see him until the end of March. I am still wondering if the Sjogren's has added to what is happening in my back.
In the meantime, I finally bit the bullet & saw a doc yesterday about being certified to be a medical marijuana patient. I just got my 84 y/o mom (with Alzheimer's) on MM also. She is now a raging fan. I researched it a lot. It is supposed to help chronic pain; anxiety and slow the progression of neuro-degenerative diseases. I really have avoided going this route and have tried everything else, but the pain is just too much. I took my mom a couple of weeks ago to purchase her mm. I don't know what I expected..some seedy place with a criminal element in a nearby car waiting to rob 2 old women of their new stash...It was nothing of the sort. I was impressed by how upscale and professional the whole thing was.
We had a consultation with a pharmacist who discussed my mom's medical issues and made her recommendations on what to start my mom on. My mom was nervous about trying it, but now is loving the fact that she has no pain.
It looks like it will take awhile to sort out my latest issues..but at least I will have some pain relief while I wait. That will be appreciated.
I just have to say thanks to all of you. I have been on this site for years and it is always so comforting to be able to turn to folks who "get it". No judgement, just support. :)
Thanks.
Take Care.
SjoDry