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tiredredhead
Regular Member


Date Joined Nov 2006
Total Posts : 76
   Posted 5/17/2017 9:52 PM (GMT -6)   
I am new to the MS board, but not to HW, even though it's been years. Right now my doctors and therapists are struggling to find a correct diagnosis for me. My primary care doctor told me today " There is something very wrong, but I am out of ideas". He has ruled out cancer, RA, Lupus, Lyme and any hormonal, metabolic, or thyroid issue. My PT is deadset on my being tested for MS. And my doc jumped on board today and is referring me to a neurologist since he's out of ideas.

I have several ongoing chronic physical issues which seem to be "clouding" newer symptoms. We know I have degenerative disc disease, with 4 herniations in cervical spine, and severe degeneration with a tear in one disc in my lumbar spine. I have some nerve damage due to that. I also have chondromalacia patella and chronic bursitis due to osteo in both knees. Between the back issue and knee issue i have lost the "signal" to the posterior tibial tendon in left foot.

The current symptoms they are looking at, that do not fit with prior dx's, and are progressively worsening: memory loss (forgetting to pay bill, can't remember where I put something), higher brain activities like math are declining, difficulty planning things, having to think too long for correct word or using another one, writing dates and appointments down wrong. Mild confusion if a task seems overwhelming. Joint pain in odd spots (PT thinks its actually muscles that are putting too much tension on joints) constant muscle tension/stiffness that makes me constantly try to stretch out and PT says its not normal for my issues. (She has been my PTherapist for years treating knees and spine and is saying there is marked degeration of muscle tone and cognitive abilities in the last year or so) constant tremor in hands, but that has almost always been there.

I am a stay at home mother of 5. Three grown, and two lovely granchildren who mostly live with me.
Does any of this sound like MS? Or should I keep pushing my doc for answers while waiting on neuro consult and his tests?

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 211
   Posted 5/18/2017 8:32 AM (GMT -6)   
Hi tiredredhead,

Your current health issues definitely complicate things. If there is a concern about the possibility of MS then, yes, see a Neurologist for an evaluation and testing.

Cognitive Dysfunction can be due to many different reasons. If you are taking any prescription medications it would be a good idea to research any possible side effects. There are medications that can negatively effect cognition. When cognitive abilities decline or negatively change it is usually a good idea to have a Neuropsych evaluation and testing. This type of testing is done for many different health issues. I have had Neuropsych evaluation and testing.

Your PT referred to muscles putting to much tension on joints. This might fall under Spasticity. Spasticity has different causes. If it is spasticity muscle relaxers should help.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3508
   Posted 5/18/2017 9:26 PM (GMT -6)   
Hi Tiredredhead,

You have a lot going on. I'm sorry! Your current health issues do complicate diagnostics. As Snoopy has said, spasticity can be caused by things other than MS.

Your neurologist may order a brain MRI. Other common tests for MS are: blood work; a lumbar puncture, evoked potentials. These are only considered after a thorough neurological exam that reveals abnormal reflexes and responses.

Best of luck to you. Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

tiredredhead
Regular Member


Date Joined Nov 2006
Total Posts : 76
   Posted 5/19/2017 10:38 PM (GMT -6)   
Thanks for the responses. Right now I am just waiting on the referral nurse to call with the neurologist appointment. I despise this waiting game. It's been " let's check for this, well maybe it's that" for what seems like forever. Meanwhile whatever it is keeps progressing. I did go back and double check my meds, but all I routinely take is 800 mg of ibuprofen and was taking an occasional Flexiril. Have ended up on Lexapro due to chronic pain and stress, but the onset of all this predates that. My doc just put me on baclofen for the muscle spasticity. I can handle my "regular" pain, but this fatigue and mental decline is making me crazy. Tonights fun and games are random sharp nerve "twitches" and sudden stabbing nerve type pains. Juuuust when I think they are done for the night and I can sleep, they start again.

I have three medical professionals in agreement that this really looks like MS and hoping the appt for neuro is soon. But I have had an MRI of my neck, upper spine, and lower spine at different times within the last 3 years. Wouldn't they have seen lesions on those?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3508
   Posted 5/20/2017 7:34 PM (GMT -6)   
Not all those who have MS have spinal lesions. Also, if the MRI wasn't ordered to specifically look for lesions, then they could be missed. I believe there is a certain way MRIs are done when trying to rule out/in MS. I could be wrong on that, however.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14513
   Posted 5/21/2017 9:28 AM (GMT -6)   
Hi tiredredhead, I can answer your question about the MRI's of your spine. Yes, if there were any lesions they would have shown up on those scans. As Snoopy & Gretchen posted above the dr will order testing after a thorough exam. If a lesion were to show up in the brain on an MRI, then an MRI with contrast could be next to get more of an idea about a lesion. Keep in mind, people can also have what is called benign lesions that are not MS or cancer related.

I hope the Baclofen helps, it has been a life saver for me. I have been on it for several years & so far it continues to work well.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 211
   Posted 5/21/2017 6:43 PM (GMT -6)   
Hi tiredredhead,

Baclofen works well for spasticity, but Baclofen, Flexeril and some of the other muscle relaxers can cause fatigue. When there is constant or chronic fatigue cognitive function can decline, when fatigue is improved cognitive function has the ability to improve.

Would the spine MRIs you have had also show lesions? Yes. However, it is possible to have MS and lesions not initially show up. If the Neurologist suspects MS s/he will do follow up MRIs. Multiple Sclerosis is a disease of the Central Nervous System(CNS) which includes the brain, spinal cord and optic nerves. Lesions can show up anywhere within the CNS. Spinal cord involvement would not cause cognitive dysfunction, so even if you had lesions on the spinal cord it would not explain your cognitive problems. The Neurologist should order a brain MRI.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Penny O.
New Member


Date Joined May 2017
Total Posts : 2
   Posted 5/26/2017 7:25 AM (GMT -6)   
I'm new to this listing but am also wondering if what I have is MS. 6 yrs. ago I began on this journey of a strange neurological illness. It began with sev. months of dizziness and nausea which then proceeded to head and eye pain, bouts of ataxia, extreme pain (like constricting bands around chest and back, which I'm now experiencing), periodic hoarseness/husky voice, esophagus "swelling"/constriction and inability to swallow, periodic problems with inability to take a breath (diaphragm involved), muscle spasms, brain fog, problems with slow processing of info, problems with word recall, etc. Neurologist did lots of tests and MRI of brain and one of spine in 2012. MRI's showed some lesions in brain (not MS, he said) but none in spine. Was sent to rheumatologist, ENT, etc. Testing showed I do have Meniere's Disease and also migraines (which may be cause of lesions). Have fibromyalgia and arthritis plus degenerative disc disease, probably due to severe car accident 28 yrs. ago. I was later sent to an integrative dr. who did his own testing and found that I had a mercury toxicity, chemical toxicities, and Epstein Barr virus, 2 chronic pneumonia bacterial infections, and a chronic strep infection also affecting my health. In other testing (SRT for allergies), 2 of the Lyme/lyme asso. bacteria also showed up. The ataxia can get to be extreme. Usually I just look like I'm a "happy drunk" walking; I actually can't walk forward like normal. But, it can get severe and my legs will "go out" and can't hold me up. It can last for days, weeks, or months. Oftentimes it's then followed by extreme all over stiffness, which makes it very difficult to move at all. Had a flare of the ataxia and head/eye pain with brain fog from Oct. to Dec. Then had 3 months without it but with more minor complaints. Ataxia flare began again in April and just ended. Now this constricting band around my back and chest. Also, hoarseness/huskiness. The integrative doc says it may well be MS (even tho the neurol. said not) or Lyme or a combination of things. His testing discovered that I have a gene mutation that makes it very difficult for me to get rid of toxins, which of course complicates things. But, he also said that no matter what it is (whether MS or these infections/toxicities that have "gone to my brain"), he'd still treat it the same way. There are months when I'm pretty much housebound. Others when I use the walker, rarer times when I need the wheelchair, and times when I can navigate on my own and even go for walks. I'm getting really frustrated by it all. As the integ. doc says, we've made progress but need a breakthrough. Do these many symptoms sound like MS?

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 211
   Posted 5/26/2017 9:17 AM (GMT -6)   
Hi Penny O.

If you haven't had MRIs (spine & brain) since 2012 then it might be a good idea to have them repeated. If you were to have MS there would probably be changes on your MRIs at this point. The mobility problems you describe, in MS, would indicate spinal cord involvement. Even though your Neurologist said it's not MS in 2012 doesn't completely rule out MS and the reason for repeat MRIs.

With everything you have been diagnosed with it's possible one or all is causing your problems. MS isn't diagnosed based on symptoms alone simply because many other conditions cause similar symptoms and they can overlap one another.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Penny O.
New Member


Date Joined May 2017
Total Posts : 2
   Posted 5/26/2017 12:14 PM (GMT -6)   
Thanks. Yes, that's kind of what I was thinking, too. Just not sure neurologist will approve since I'm fine whenever I see him now smile
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