Waiting for dx

[Neurofeet]

I started having pain in my feet 7 months ago. Started with the podiatrist who diagnosed worsening arthritis of big toes of both feet. Had three rounds of cortisone shots with limited improvement. Then a month later had burning in feet that moved up my legs. After ruling out usual suspects for neuropathy: diabetes, B12 deficiency etc., internist sent me for NCV test. The doc who performed the test found neuropathy in legs and recommended MRI of brain and cervical spine. Brain MRI showed lesions but my doc did not think this indicative of  MS. She sent me for lumbar MRI. Nothing significant showed on that to explain foot problems. By now pain had been so bad I could hardly walk at times. Then it would ease up a bit. Numbness, paresthesias and fasciculations driving me mad. My podiatrist reluctantly prescribed hydrocodone which hardly touched the pain. I had been prescribed gabapentin which did little for the neuropathy. Then I was switched to nortriptyline which helped a lot. Other symptoms were urinary frequency, like every 15 mins at times and once the right side of my face got really hot all of a sudden. By summer neuropathy, paresthesias and fasciculations were still very troublesome. My doc sent me to a neuro who said MRI of brain indicated possible MS. He also noted asymmetric and abnormal deep tendon reflexes.  MRI report noted sub cortical and peri ventricular lesions in both hemispheres. He sent me for a lumbar puncture. It's been a week, results are in but still waiting for doc to call with the results. I am going crazy waiting. If not MS, what could it be?

[Sailorsong]

Having a clean LP doesn't mean that you don't have MS like your doctor said. An LP doesn't rule out MS, only to back up a DX of MS.

I personally had a clean LP (done twice) but have a DX of PPMS. I know several others that have various forms of MS (RRMS, SPMS, PPMS) that also have had clean LP results. If your doctor is ruling out MS based solely on the LP results I would look into getting a second opinion.

Dennis

[Neurofeet]

Thanks.  I spent months researching possible causes of PN before MS suggested by my primary doc and the neuro.  I went from being sure I had PN due to diabetes, Not, to idiopathic PN to MS.  I am relentless in my research.  Unfortunately I realize I may never get a firm diagnosis and cause.  Just want to figure out what is really going on and get the right treatment.  Frustrating it is taking so long but at least the current med (nortriptyline) seems to be abating sx somewhat.

[supermum_ms]

Unfortunately it's too hard to say if it's possible for it to go away by it's self because it truly depends on what has caused the polyneuropathy, you've definitely got some tests to get through to work it out. Just to give you some ideas on possible causes...

"Some neuropathies develop over years, while others can start and get severe within days.

Nerve damage can be caused by:

Autoimmune (when the body attacks itself) disorders
Conditions that put pressure on nerves
Decreased blood flow to the nerve
Diseases that destroy the glue (connective tissue) that holds cells and tissues together
Swelling (inflammation) of the nerves

Some diseases lead to polyneuropathy that is mainly sensory or mainly motor. Possible causes of sensorimotor polyneuropathy include:

Alcoholic neuropathy
Cancer (called a paraneoplastic neuropathy)
Chronic inflammatory neuropathy
Diabetic neuropathy
Drug-related neuropathy
Guillain-Barre syndrome
Hereditary neuropathy
Vitamin deficiency (vitamins B12, B1, and E)"
https://www.nlm.nih.gov/medlineplus/ency/article/000750.htm

Cheers.......JJ

[Neurofeet]

I went back to the neurologist today,  he said LP indicates no MS.  He doesn't know what is causing my symptoms and is sending me to a specialist to check for small fiber neuropathy.  But I read that small fiber neuropathy does not show up in a nerve conduction test, just large fiber,  I had a NCVT and it indicated I have poly neuropathy.  I don't have diabetes, don't have B12 deficiency or amyloidosis.  So now I have to schedule an apt at the University of Maryland Hospital with a specialist in neuropathy.  So confused.  I asked if I could have glucose problems that are neither diabetes or predicates as have read small fiber neuropathy and other kinds of peripheral neuropathy can be caused by poor glucose control that only show up in a glucose tolerance test.  So then he said yes, you should go back to your regular doc and ask for that test.  I am beyond annoyed at this point.  My symptoms started 6 months ago and have fortunately improved since I have been on nortriptyline but I still have weird sensations in my feet all the time, worse at night and worse after exertion, fatigue or stress.  Does anyone know if this might just go away by itself?  Sorry I know I may need to ask on another community,  thanks so much.

[Neurofeet]

Also, should mention I take cymbalta (duloxetine) for depression and anxiety, but I also think it's helping the neuropathy too.  I know Cymbalta is used for pain as well.  So could be the combo that is doing the trick.

[Neurofeet]

Thanks very much.  And you are exactly right about the meds, and getting the right dosage; they are either anti-epileptics or antidepressants and you have to adjust the dosage to get relief.  I take 20 mgs. of Nortriptyline at night and it has helped me a lot.  Some people do well on gabapentin or Lyrica.  Those drugs do not agree with me, at all.  The pain in my feet had been so bad I could not sleep.  And during the day, I could hardly walk and sitting was torture with the tingling and twitching going on. Now I am pretty much ok in dealing with it unless I do a lot of walking, housework, etc.  then I feel like my legs and feet are zinging!  I was starting to think that February was the start of my first MS flare up and that I am now going into some kind of remission.  But I still don't know for sure I have MS.  So it's a waiting game.  It's been a roller coaster, first worrying I had diabetes causing PN.  Then thinking a pinched nerve, and now, who knows?  Just grateful for some relief.

[kwarendorf]

I NF - Welcome to the group.

Neuropathic foot pain is a movie I've seen :-) There is no 1:1 med to pain thing. The meds used to treat neuropathy are generally meant for another purpose. Most often they are either antidepressants (amitriptilyne) or anti-seizure meds (gabapentin, Lyrica).

It can take a while to get the righ combination and dosage dialed in. But it is very doable :-)

Kyle

[Neurofeet]

The nortriptyline helps the neuropathy which is what I meant by masking.  My neuro said over time it should help even more.  Gabapentin was originally prescribed, but did not work as well for the neuropathy, made me feel like a zombie and depressed.  Lyrica is similar to gabapentin and is also used for neuropathic pain as is amitriptyline which is very similar chemically to Nortriptyline.  I tried all of these when I had shingles and post herpetic neuralgia two years ago.  Pain was worse I have ever experienced even worse than childbirth. Nortriptyline worked best for me.  Sorry for any misunderstanding HVAC.  Also, I have read McDonald criteria.  I need another relapse to fit this I believe, so it's probably a waiting game.  Hopefully sx continue to improve and I never have an exacerbation.  Thanks again.  

[HVAC]

You can't mask neurological symptoms with medication. Many people have negative LP. You can read about the McDonald Criteria which is how they diagnose MS.

Alex

[Neurofeet]

Thanks for your response and so happy for you.  I have gone in and out of anxiety over this.  I did get my LP results today, and all results were normal.  So I don't know what to think.  Doctor had someone else in the office give me the results so I could not ask questions.  But I do have an appointment next week, so I can ask then.  So, I guess the odds are good that it is not MS, but them from what I have read, it is not that clear cut. And I still don't know what is causing my sx.  I am grateful for relatively mild sx by contrast to others.  I know the road to a dx can be long, sometimes years.  And I don't know if I would want any treatment at this point anyway, other than to mask the symptoms which I already have achieved with the Pamelor.  So unless the pain gets worse, I will try to be patient and grateful.  I have so much to be thankful for.

[HVAC]

MS LP tests can't be done at just any lab. They often send them to several for comparison. Also it depends on the doctor's availability to explain the LP results. Mine took six weeks. Yes it does drive you crazy. Then the doctor did some more blood work and something pointed to Lupus so more testing. I finally turned out to be MS. From the time the first neurologist said it was MS it was two years and 6 neurologists to finally diagnose it. No test rules MS in or out. They go by something called the McDonald Criteria which looks like a neurologist wrote it it is so complex and vague.

As far as the feet. I have all the issues you describe. Besides the medications and few more my pain is the same. I have had to learn to live with it. If you were to have relapsing Remitting MS which most people start with it could come and go. IV steroids and physical therapy are the only things else. You do not have to have a diagnosis to treat symptoms. I go to a pain clinic which is a God send. I swim a mile a day and walk even though it is painful. Distraction helps me. Hiking places, walking the dog.

I can hardly walk and I am going to Europe for 3 1/2 weeks. I am hoping I am so excited I forget I hurt. I am taking crutches.

I realized worry is trying to control the future and I can't. I am so relaxed about the trip. I have the house cleaned, I am packed, and have the pet sitters straight.

Yesterday my cat had a blocked bladder from kidney stones. They can die if the bladder ruptures. I got him to the vet. He has to stay through the week end and we leave tomorrow. I saw him today. He has a catheter going to a bag of bloody urine. He has an IV and a plastic hat. He was happy to see me as I was him. I am relaxed because I know the vet and pet sitter will take care of him.  Besides there is nothing more that I can do.

I am surprised how relaxed I am. I was not calm during the MS saga. I drove myself and all those around me nuts. I had to go to counseling for five years. I can't believe I am the same person.

Since I was diagnosed with MS very little has changed. I have a rarer form of MS and my symptoms stay. The difference is now I have something real. People in the medical profession do not roll their eyes as if to say here comes a hypochondriac.

I hope you get your answers. A friend of mine went to New Zealand and everyone says no worries and smiles.

Alex